Food Allergy Thoughts (from Sophie Safe)

10 Things That Make Me Crazy

2012-02-17T11:39:00.000-08:00

There is a list of things that make me crazy, and not in a good way. I started to post that list here. But as I began typing the items, I felt so hypocritical. The things that make me crazy (because of their implications for Sophie) are also things that Sophie loves when she can participate in them. She doesn't love them because of novelty, she truly loves things that involve food. For example, it makes me crazy that so many people include decorating a cookie as a party activity, but Sophie loves to decorate cookies. She also loves to bake, or cook, or make up recipes, or do anything that involves food and a kitchen. Of my four girls, Sophie is hands-down the best in the kitchen. Over the summer when I broke my leg, everyone took turns cooking. On Sophie's nights, she didn't have to ask questions, wasn't nervous about whether this or that looked right or worried about things turning out. She just jumped in and cooked (I can't say the same for her 2 older sisters). Sophie can read and follow a recipe, which I think is impressive, since many 4th graders still barely understand fractions, and has the confidence to know the recipe will work.

Instead of writing about things that make me crazy, I think it is more appropriate to write about things that make me happy.

10 Things That Make Me Happy*

1. My kid who needs to be able to cook loves to cook.
2. Sometimes people serve hot dogs (instead of pizza) at kids' parties.
3.Party games that involve food often also require a judge, so not everyone has to touch the food.
4. Frosting is nearly always Sophie Safe, even though cookies are almost never safe.
5. My youngest chooses not to pass out food to her class for her birthday, Valentine's Day, etc.
6. Sophie chooses to make and pass out cookies or other treats to her class for her birthday, Valentine's Day, etc.
7. Not all crafts involve food. In fact, most don't.
8. Cross-contamination issues can almost always be solved using soap and water.
9. Benadryl is around for when the soap and water wasn't enough.
10. Other people are always willing to help me help Sophie when they have enough information to do it.

*The word "Happy" may or may not indicate tears.

Listening

2012-02-15T15:11:00.000-08:00

Sometimes those politicians pay a little attention to what's going on in the world. I sent an email expressing my support for School Access to Emergency Epinephrine Act, S.1884 to Senator Bennett from Colorado, and I got an ACTUAL NON FORM LETTER response!

Dear Emily:

Thank you for contacting me in regards to School Access to Emergency Epinephrine Act, S.1884. I appreciate hearing from you on this important issue.

Food allergies afflict millions of American children every year and this problem is getting worse - allergic reactions are among the most common causes of costly emergency visits.

As former Denver Public School Superintendent, I know firsthand the importance of keeping our kids healthy and ready to learn. And with allergies affecting more than 6 million children, it is vital that schools are able to quickly and adequately treat allergic reactions. I am pleased that Colorado is in the process of developing food allergy management guidelines to help ensure schools are prepared to treat students experiencing allergic reactions.

Introduced by Senator Richard Durbin of Illinois on November 17, 2011, the School Access to Emergency Epinephrine Act would ensure that epinephrine is available in schools to help treat students who experience allergic reactions. It would also ensure that school personnel are trained to properly administer epinephrine. The School Access to Emergency Epinephrine Act has been referred to the Committee on Health, Education, Labor and Pensions. As a member of this Committee, I will keep your thoughts in mind as we consider this legislation.

I value the input of fellow Coloradans in considering the wide variety of important issues and legislative initiatives that come before the Senate. I hope you will continue to inform me of your thoughts and concerns.

For more information about my priorities as a U.S. Senator, I invite you to visit my website at http://bennet.senate.gov/. Again, thank you for contacting me.

Sincerely,

Michael Bennet

United States Senator

Woohoo--maybe we can get this thing passed after all!

It's simple after all!

2012-02-09T23:21:00.000-08:00

Great news! Recent studies show that more sun exposure correlates with less food allergies! It is so simple! I wish I'd known this years ago! All I have to do is put Sophie out in the sun!

(Google "sunlight and food allergy" for more information.)

Please Support!

2012-01-21T20:15:00.000-08:00

Please consider contacting members of this committee:

http://www.govtrack.us/congress/committee.xpd?id=SSHR

and asking them to support S. 1884: School Access to Emergency Epinephrine Act. This bill would allow schools to have a supply of epinephrine and administer it to any student believed to be having an anaphylactic reaction. If Ammaria Johnson's school had this policy, she would likely have lived. Let's get this bill passed so there are no more Ammarias.

Is this what it takes?

2012-01-17T19:24:00.000-08:00

I've thought for years that Epipens should be in first aid kits. Not in every dinky little first aid kit, but in the big ones at schools and day camps and scout camping facilities and probably also on airplanes, in airports and bus stations...this list could get pretty long. Reading this column from Margaret Carlson, I can't help thinking, is this what it takes? Or will there be more little girls and boys who die before major organizations are allowed to have and administer Epipens to anyone who's life is threatened?

Food Allergies and Dating?!?

2012-01-09T07:12:00.000-08:00

I just watched a video from Living Without about food allergies and dating. It's funny how adding food allergies to the mix means that I'm more worried about my 9 year old dating than my teenager, even though it's years away for Sophie. Food allergies sure put a weird spin on life.

Preventing Food Allergies

2012-01-04T18:27:00.000-08:00

I just read another article about preventing food allergies. Over the past 9+ years, I have read hundreds of such articles. The theories about prevention used to focus on abstaining from allergenic foods at the end of pregnancy and during breastfeeding, and now the opposite advice is given. In fact, current guidelines recommend that parents should not wait too long to feed their babies solid foods, because in theory waiting too long could contribute to food allergy development. It's all very interesting. But to me, it's kind of irrelevant.

Irrelevant? Really? Yes, actually. Because my reality is that Sophie has food allergies already. So it's not really about preventing food allergies for us. For our family, the focus is preventing allergic reactions. Obviously, I support the research. I would love to see a day when babies never go through what Sophie did. I would love to find cures. But if I think about what I could have done different, the should'ves and could'ves, it will make me crazy with guilt. In order to live with myself, I have to believe that food allergies sometimes just happen, and that Sophie just got unlucky on this one.

I will donate money to find a cure. I will support research about causes, and even read about it occasionally. But my focus is to keep Sophie safe. My job is to make sure that she has the support necessary at school. My calling is to make her life comfortable and happy at home and in social settings, despite the gulf between what her body will accept and what everyone else serves and eats. Sophie came to our family with food allergies, fresh from heaven. And I will make sure she doesn't go back too soon.

Lots of reading

2011-12-29T20:26:00.000-08:00

Oh my, time has passed quickly! Our family loves tradition, and as soon as December hit, the kids were begging to bake Christmas cookies, make caramels, buy and wrap presents, decorate the house and yard, etc., etc. In the midst of all of that, I read Don't Kill the Birthday Girl by Sandra Beasley. Ms. Beasley is an adult who has had life-threatening food allergies her entire life. She covers her own experiences and thoughts about food allergies, as well as explaining food allergies and food allergy research from a technical viewpoint. Her book is well-written and fascinating, and brought up a number of issues I hadn't considered about Sophie's life after being a little kid, including these:
1. kissing
2. cafeterias (think college dorm life)
3. roommates
4. varieties of peer pressure.

I recently discovered that there is another type of food allergy memoir recently released. This is a mother's account of her family's journey through the food allergy maze: Susan Weissman's Feeding Eden. I look forward to reading it as well. We are blessed to live in a time when we have easy access to the experiences of others, and can learn and grow from them.

Being Present

2011-11-30T13:00:00.000-08:00

My thoughts today aren't particularly about being a mother, or about food allergies, but I hope they will be helpful to all of you as we are in the midst of the holiday season. Today I re-learned the importance and benefit of being present in the moment.

With 4 children, life often feels quite chaotic to me. I can never finished today's To Do List today, and there are always interruptions that cause a task to take longer than I planned. As a result, I have become a master at multi-tasking. Some of my multi-tasking is very beneficial, such as bringing a book or magazine in the car so I can do a little reading while I wait for my kids to come out of their activity. However, I have noticed more and more often that I am thinking about the next important task while doing this important task, and as a result I make mistakes.

Two days after Thanksgiving, my kids wanted to start decorating for Christmas. I agreed, and out came the tree, the boxes of ornaments, dozens of strings of lights--we don't actually use them all when we decorate, but we like to have options. Once the tree was up and there were ornaments, boxes, lights, packing material and ribbon spread all over the living room and dining room, the kids started asking about making gingerbread houses. Soon after that, they wanted to make candy for their teachers. I said no, we need to finish decorating, clean it up, and then begin planning our next Christmas project. Sophie asked me why, and the answer that came out of my mouth is so completely true: in order for me to enjoy Christmastime and all the traditions we have surrounding Christmas, I need to be present for today's activities and complete them before I move on to the next thing.

Today I got to try out "being present" in a very small way. Wednesday is my baking day. I decided to make muffins. The past few times I have made muffins, I was so rushed that I didn't spray my muffin tins well and ended up with muffins stuck in the pans, or breaking as I took them out. Today I was enjoying making muffins and focused on my task. I sprayed the muffin tins liberally. I measured and mixed ingredients accurately. And when the muffins were baked, 25 of 28 muffins came out of the pans beautifully, because I was present and focused on the activity at hand, instead of thinking about something else while I worked on the muffins.

A successful batch of muffins is much more satisfying than a ruined batch of muffins and a half-ruined batch of cookies. Being present and enjoying today's activity is more important to me than completing a long list of things that I won't remember doing. I hope that you will also choose to slow down at this hectic time of year and be present for the important things.

Aunt Jeannie's Cranberry Salad

2011-11-14T19:13:00.000-08:00

In our family, holidays have always been built around family and food, and we have big families. Last Thanksgiving, we had a total of 16 people staying at our house. Holiday recipes have become traditions, and we were delighted to realize that Aunt Jeannie's Cranberry Salad is safe for Sophie—no modifications are even necessary. This is certainly a family favorite. Last year, we made a double batch for Thanksgiving Day, and a second double batch for after Thanksgiving. Some people might consider this salad to be a relish, but our family eats it like a separate dish. It's been known to be eaten straight out of a bowl, and I've also seen family members pile it onto turkey, mashed potatoes, and even on top of pie! Making it a few weeks before Thanksgiving to take the pictures for this post was a special treat. Every one of my children said, “You mean we get to eat it today?!?”

Aunt Jeannie's Cranberry Salad

1 12 ounce bag of whole fresh cranberries
1 navel orange
1 granny smith apple
1 cup sugar

This salad is very simple to make. You will need a food processor or a high quality blender. I use a food processor, so these instructions will reflect that.

Sort and rinse the cranberries if necessary. Be sure to drain them well if you do rinse them. Pour the cranberries into the food processor and pulse until they are chopped evenly, and to the size you prefer.

Empty the cranberries into a large mixing bowl. Wash the orange and apple, but do not peel them. Cut the orange into quarters and process it in the food processor just as you did with the cranberries.

Some people like to process the apple in the food processor as well, but I prefer to chop it instead. I like the texture and color that this adds to the salad. I quarter and core my apple, slice it thin in one direction and then slice it thin again at a 90 degree angle to the first slice.

This photo shows the half on the right has been chopped completely, and the half on the left is only half done.

Add the oranges and apples to the mixing bowl, as well as 1 cup of sugar. Mix the salad together and eat immediately or refrigerate overnight before serving. Make sure to get some quick, or you won't have any at all!

Support

2011-11-12T00:42:00.000-08:00

Recently, a friend of a friend was diagnosed with food allergies. As I tried to help her support her friend, I thought of things that people did to support our family when Sophie was diagnosed with food allergies.

One friend wanted to do a babysitting swap. The idea terrified me at first, because Sophie was crawling at the time, and picked up and ate everything she saw on the floor. But Lisa realized the danger and she decided that "mop the floors" day would be the same as babysitting swap day. Every time it was her turn to watch my kids, she vacuumed and mopped and found every tiny crumb in every corner so that little Sophie wouldn't be able to eat something dangerous, like graham crackers or Goldfish.

Often in those first years, I would get envelopes in the mail from my Mom--recipes she found that would be safe for Sophie to eat. She tore out recipes from all kinds of magazines and mailed them to me. She researched "ice cream" made with soy or rice milk. She found less expensive gluten-free pastas. And when we would visit, my Mom purchased new bags of baking and other ingredients, to be sure there were no cross-contamination issues.

As Sophie got older, it was important for her to be able to have playdates. I always felt more comfortable with friends coming over to our house--honestly, I still feel that way--but Teri liked to have Sophie over at her house. I would pack a little snack for her to take, until Teri told me she always picked up certain little things when she went to the grocery store so that Sophie would have a snack if she happened to come over.

Over the years, I have appreciated all the friends who thought about Sophie's allergies when she was coming over for a party. I have been grateful for every classroom party planner who gave me the menu before the party. I have been glad for each teacher who let me know ahead of time about popsicle parties, or pizza parties, or popcorn parties so that I could check labels or bring an alternative for Sophie. I am grateful to every person who spent enough time thinking about Sophie to realize that she needs to be included, even though she might not be able to eat exactly what everyone else eats. Because, really, when it comes down to it, Sophie is a kid just like any other.

Bucking Tradition

2011-10-20T06:49:00.000-07:00

Sometimes it takes something like food allergies to cause us to really look at traditions. Are all of our traditions good ones? Or do we have a few that promote ideas contrary to our personal values?

Along those lines, I've been thinking about Halloween. When it comes down to it, Halloween is such an odd holiday. We let our kids dress up as whatever they want--sometimes depicting really gross or even evil things--and then we send them out to collect candy from our friends in the neighborhood and from strangers as well. The other parts of it are really weird too, like carving jack-o-lanterns, decorating our homes with spiders and witches, etc. And if you start delving into the history behind these traditions--that will give you a real headache!

So I restricted myself to looking at the traditions in which we participate.
1. Jack-o-lanterns: we love to carve pumpkins. In our home, it is a major event. We clear off all the surfaces in the kitchen, get out markers and scoops and safety knives, and everyone gets creative. Jeff and I usually help the kids scrape all the "guts" out of their pumpkins, and I pick out the seeds and roast them while everyone is drawing and cutting their faces, so we have a little treat at the end. Thankfully, Sophie is not allergic to pumpkins or pumpkin seeds, so this is one tradition that is a keeper for us. Bundling creativity, family time, and a healthy snack together is definitely my idea of a productive evening.

2. Booing: this particular tradition is so fun! For anyone who hasn't done it, I would recommend starting it in your neighborhood. Basically, you print off instructions and a little Boo sign from your computer (this is the site we usually use) and put together a little package of treats or toys for a couple of neighbors. Drop them on their doorstep, ring the bell and run. They won't know who dropped them off, but they'll know that someone thought of them, and they now have the responsibility of Booing a couple more neighbors! We love to pick who to Boo, and if we include treats, we always use things with ingredients on them or include a little note about what's in the treat in case of food allergies.

3. Dressing up: I love costumes. I love to research them and create them. I love to take an ordinary little girl (I only have daughters) and some ordinary materials and invent something spectacular. This tradition is also a keeper in my mind. It provides me with a creative outlet, and has given me opportunities over the years to teach my children all kinds of skills, starting with researching and following directions to make their chosen costume, but also leading to many skills specific to the job at hand. Best of all is the sense of satisfaction I see in their eyes when they see our creations.

4. Trick or Treating: for my kids, this is just treating, really, because they would never do something mean because someone didn't pass out treats. This is the one tradition I would do away with if I could. I don't really like them running all over the neighborhood, talking to who knows who, and no one needs that much candy!!! However, if we are going to pass out treats, and receive them, I think a few changes are in order. I've seen my kids bring home spider rings, erasers, pencils, fruit snacks, popcorn, and other healthier options. This year, I am going to join that bandwagon--no more buying candy--I will help my neighborhood kids be a little healthier (and more allergy friendly) this year.

Now, to examine Thanksgiving...

A little research...

2011-10-19T20:21:00.000-07:00

In the name of research I'd like to pass on this letter and request that any of you who are parents of children with food allergies go ahead and fill out the survey.

Thanks!

To whom it may concern,

I am a graduate student at UMBC conducting a research study on food allergy knowledge in collaboration with a pediatric allergist, Dr. Mary Beth Bollinger, and a UMBC clinical psychologist, Dr. Lynnda Dahlquist. The purpose of this study is to develop a measure of illness knowledge for parents of children with food allergy. Although health care providers routinely educate parents about the best ways to manage food allergy, they do not currently have a good way to measure how well parents understand the information that they provide. Given the potentially severe consequences of mismanaging a food allergy, it is crucial to identify any gaps in parents’ knowledge or areas of possible confusion or misinformation.

The measure we are developing will be among the first of its kind. The results of this study will help pediatricians and allergists determine how best to supplement the information that parents are typically given when receiving a food allergy diagnosis. The development of this food allergy knowledge test will also allow parents to examine their own knowledge and determine whether they would like additional information regarding diagnosis, treatment, responses to allergen exposure, or other aspects of managing their child’s food allergies.

Mothers of children (up to 18 years old) with food allergies are invited to participate in this study. Participants will complete a food allergy test and answer questions about their child’s food allergy diagnosis and medical history. These questionnaires will take approximately 25-30 minutes to complete and are available at http://www.surveymonkey.com/s/foodallergytest. If you prefer to take a paper version of the test, please contact me at amyhahn1@umbc.edu or 410-455-3113. All participants will be entered into a raffle to win a $100 gift card to one of the following stores: Target, Wal-Mart, or Whole Foods.

Please contact me if you have any questions or concerns.

Sincerely,

Amy Hahn

Pediatric Psychology Lab

University of Maryland, Baltimore County

Emotions!!!

2011-10-13T08:25:00.001-07:00

A friend shared this fabulous post about the emotions of a food allergy mom and I had to share it with all of you--I hope you will enjoy it--it made me laugh AND cry!

http://www.rantsfrommommyland.com/2011/10/domestic-enemies-of-allergy-mom.html

Health Food

2011-10-08T09:54:00.000-07:00

There are loads of reasons to eat health food. You know, the kind of stuff that costs twice or more than twice what the regular brand costs, and has names like BeautyEats and GreenYummies. Health food chips are the weird colored ones--they might be orange or purple instead of the usual light yellow or white. And the health food granola bars have little pieces of stuff in them. You know the food I'm talking about.

The health food companies will tell you that if you eat their food, you will have more energy, have prettier skin and hair, grow faster (if you're still a kid), grow thinner (if you're an adult), have a stronger heart, cleaner blood, breathe better...the claims go on and on.

But I will tell you the number one reason I like health food--the ingredients are easier to understand. Here are the ingredients for a popular flavored chip--the non-health food brand:

WHOLE CORN, VEGETABLE OIL (CORN, SUNFLOWER, AND/OR SOYBEAN OIL), CORN MALTODEXTRIN, SALT, WHEY, NATURAL FLAVORS, SODIUM DIACETATE, JALAPENO PEPPER POWDER, MONOSODIUM GLUTAMATE, DEXTROSE, SUGAR, CREAM, BUTTER (CREAM, SALT), CORN STARCH, ONION POWDER, SPICES, CANOLA OIL, MODIFIED CORN STARCH, SOUR CREAM (CULTURED CREAM, NONFAT MILK), CHEDDAR CHEESE (MILK, CHEESE CULTURES, SALT, ENZYMES), ARTIFICIAL COLOR (INCLUDING: YELLOW 6 LAKE, YELLOW 6, YELLOW 5, RED 40, BLUE 1), SWISS CHEESE (MILK, CHEESE CULTURES, SALT, ENZYMES), COLBY CHEESE (MILK, CHEESE CULTURES, SALT, ENZYMES), PAPRIKA EXTRACT, MONTEREY JACK CHEESE (MILK, CHEESE CULTURES, SALT, ENZYMES), AND ARTIFICIAL FLAVORS.

And these are the ingredients for a similar chip--but it's the health food version:

Organic blue corn, expeller pressed canola oil and/or safflower oil and/or sunflower oil, seasoning (dextrose, sea salt, spices [red pepper, white pepper, black pepper], torula yeast, onion powder, garlic powder, autolyzed yeast, tomato powder, extractives of paprika).

You tell me, which one would you rather have your 9 year old read when she's deciding whether or not she's allergic to eat?

Health food companies can keep their skinny bodies and healthy hair--I just want the simple words on the package, so it's simple to see if their health food is healthy for my Sophie.

Calculated Risk

2011-10-01T22:25:00.000-07:00

When someone in your family has a long-term health problem, such as food allergies, there are constant debates about how to handle things. How careful should you be? How much impact to other family members is ok? How do you maintain balance between one child's protection and other children's sacrifices? Obviously, the life of one child is worth a few sacrifices on the part of the other children. But what if the sacrifices you make to protect your allergic child are not actually necessary?

When Sophie was about 6 months old, she had her first reaction to peanuts. At the time, I didn't know she had a peanut allergy. Her older sister kissed her after eating a peanut butter sandwich. 3 year olds tend to be on the messy side, and there was enough peanut butter on her sister's lips to leave a little smudge on Sophie's face. That smudge produced 100 or so hives, covering Sophie from the waist up. Over the next few months, she had several minor reactions to peanuts. She reacted when we visited a friend who had baked peanut butter cookies earlier in the day, and whenever anyone opened a jar of peanut butter in the house. We talked things over and decided to eliminate peanuts from our home.

Part two of the story came several years later. Our oldest missed eating peanut butter. She begged us to buy some just for her to make sandwiches to take to school. My husband and I agreed. This was a calculated risk. We knew that Sophie had reacted in the past to minute exposures to peanuts. However, I felt that this risk could be tightly enough controlled that it didn't have to be a worry.

As time passed with no problems, I began to allow the girls to eat peanut butter around Sophie, and now we have had peanuts in the house for years and never had a problem. And, the calculated risk we took years ago, so our oldest could have peanut butter sandwiches at school, has given us peace of mind with Sophie being in school, at playdates, etc.

We could have maintained a peanut-free home, ignoring our oldest daughter's requests. The sacrifice would have been for nothing, since clearly Sophie has been safe in our home despite the peanuts. I am glad we were able to take the calculated risk.

The True Calling of Apricots

2011-08-30T19:02:00.000-07:00

I believe that the true calling of apricots is to be dried, chopped, and mixed into cookie dough. I love apricots, but never so well as when they are paired with a few (or a lot) of other great flavors in a cookie. Tonight we made these "Dump" cookies--starting with my regular Oatmeal Cookie recipe, we raided the fridge, freezer, and pantry and added chocolate chips, white chocolate chips, sunflower seeds, chopped dried apricots, and flaked coconut. We almost added raisins too, but they got voted out at the last second. :( Still, the result was fabulous!

If you want to try them, here's the recipe:

Dump Cookies
1/2 cup margarine or shortening
1 cup brown sugar
1 tsp vanilla
1/3 cup milk (whatever kind you normally use--soy, rice, etc.)
Mix these in your mixer and then add:
2 1/2 cups oat flour (or GF flour blend)
1/2 tsp. baking soda
1 tsp. salt
1 cup oats
1 cup chocolate chips (mix of white and dark)
3/4 cup chopped dried apricots
1/2 cup sunflower seeds
1 cup coconut
Mix it up and shape it into 1 inch balls. Place the balls 2 inches apart on a cookie sheet and flatten them slightly with your palm. Bake at 350 for 12 minutes. Enjoy some hot, save a few in an air tight container for later, and freeze some for taking in lunches, etc.

Food Bans

2011-08-06T15:54:00.000-07:00

An NPR-Thomson Reuters Health Poll surveyed about 3000 adults regarding food allergies. About half indicated that they felt food allergies fears might be out of proportion to the actual risk, which doesn't surprise me. I have often felt that way myself, although I consider myself to be well educated and tolerant of food allergies and intolerances in general.

I was really surprised to see that despite the fact that half of us think that people are over reacting about their allergies, 59% said that they are okay with food bans in public places. Personally, I am of two minds concerning food bans.

On the one hand, I empathize with those who have air-borne reactions to food. Sophie has had multiple reactions to things like boiling pasta, eggs frying in a pan, other children playing with Play-Doh, etc. She has not tended to react to people eating nuts or peanuts around her, but I can understand what that might be like. And I want people who have those troubles to be protected.

On the other hand, are problems solved by eliminating nuts and peanuts from airplane cabins and classrooms? According to the Reuters poll, one third of people who had an allergy were allergic to milk--beating out peanuts as most common allergy by a margin of more than 20%. I don't think I'm alone in feeling that banning peanuts or tree nuts from public places leaves a lot of food allergy patients in the lurch.

I don't have a generic solution to this problem. I'm glad people are accepting of food allergy bans; they are definitely a step in the right direction. What if we banned food altogether in certain situations? For example, in Sophie's classroom, instead of banning snacks with certain ingredients, what if snacks could only be eaten in the lunchroom? Or maybe 4th graders are old enough to go from breakfast to lunch to the end of school without snacks! The same could apply on short airplane flights, in museums (other than in the cafeteria), and all sorts of places.

I am still of two minds on the subject--have food bans gone too far, or have they just not gone far enough?

Starting School with Food Allergies

2011-08-01T14:13:00.000-07:00

Every year when school is starting I feel a little panicky about Sophie's food allergies. I have found that taking these steps aids in a smooth transition for her and eases my worries about potential contact with her allergens.

I start by meeting with the teacher immediately prior to school starting to talk about Sophie's allergies, find out about food in the classroom, and come up with a plan for her. Some classes have snack and some don't at our school (it's based on when the kids have lunch), so our needs have varied from year to year. The lunchroom has food allergy protocols in place, although we modified those slightly for Sophie, and they stay the same year to year.

Lunchtime
Our school offers a peanut-free table for kids with peanut allergies. Sophie and I decided it is not necessary for her to sit there, because she is allergic to so many other things and because peanuts are not her most volatile allergen. Instead, she sits at the regular table. She has a placemat in her lunchbox which she puts on the table before she gets out her food. The tables are wiped with bleach solution between classes, so this is more to mark her area than a concern about the cleanliness of the table. She keeps her food on her placemat and asks her friends to keep theirs off. It has been successful except for one time when a child purposely put a cookie on Sophie's placemat. It was treated as a bullying incident (which it was) and has not happened again.

Class parties
At first I felt like I had to plan and attend every class party, unless another allergy mom was doing it. Last year (3rd grade) I was able to let Sophie be at a party on her own. I was in contact with the mom who was planning, and she is someone I trust. Additionally, Sophie and I went over the menu ahead of time and made a plan for what she would be eating at the party (it was a breakfast). It went well, but requires a significant amount of responsibility to be placed on the child. You will want to slowly allow your child to take more and more responsibility for his/her food over time and work up to attending a party unsupervised.

Birthday treats
Sophie has a box of her own birthday treat in the classroom so that whenever a treat is brought in she can have something that's safe for her. This year, since she has outgrown another allergy and is getting really good at reading labels, if the birthday treat is something that she recognizes as being safe, then she eats it. I have mixed feelings about this--I actually REALLY don't like it--but I think it is the normal progression of things and ultimately, I think it is healthy for her to show this independence, and she is still in a controlled environment with adults who have been trained to recognize a reaction and treat it.

Educating the staff
A face to face conversation, including Epipen training and discussion of your child's particular pattern of reaction as well as general symptoms of anaphylaxis, seems to be the best education for staff. In addition to meeting face to face with the classroom teacher, I met face to face with the principal and asst. principal and I emailed information to all of the Specials (art, music, etc) teachers. You might want to meet face to face with each teacher. I asked to be informed if food was going to be used in a classroom activity, science project, etc. and made sure that everyone knew not to give Sophie any food. My guidelines and expectations have relaxed a little as Sophie is taking more and more responsibility for her own food.

A few other things: for snacks you can have a snack box from which your child can get a snack. You must educate your child about their allergies. We live by these rules when it comes to food allergies:
    Do not ever eat unless you have access to your Benadryl and Epipen.
    Say no to adults if they try to give you food that you're not sure about.
    Save something to be checked at home rather than eating it at school without reading
         the label.

When Sophie was younger, we also were very strict about this one:
    Do not eat anything unless it has been checked by mom or dad.

And the Epipen rule--no food without an Epipen--is still our gold standard.

Sophie's List

2011-07-29T09:57:00.000-07:00

Sophie's List of Wheat Foods That She Is Willing to Eat
Ramen noodles
Frosted MiniWheats
sometimes bread

And that's just about it. I keep looking for some logic in this list, and I just can't see it. I understand that it takes time to get used to a food you've never eaten. The foods that make her list are completely bizarre to me though.

I am really glad Sophie's not anaphylactic to wheat anymore, though. Not worrying about cross contamination, and asthma attacks from things boiling or baking, is such a relief!

Words cannot express

2011-07-09T16:03:00.001-07:00

Words cannot express what it's like to have a child with food allergies, to know that at any time she could make a decision that could threaten her life. Allergic Living posted this photo:

which expresses the immediacy of decisions about food for people with food allergies. I hope that Sophie always keeps her wits about her, and never has this image become true in her life.

What's this about blood transfusions?

2011-05-25T14:38:00.000-07:00

According to a letter published this week in the New England Journal of Medicine, read about it here, a young boy displayed symptoms of anaphylaxis after a blood transfusion. The patient in this case has a severe allergy to peanuts, and the blood donors in this case had been eating peanuts within a few hours of donating blood. The patient began symptoms of anaphylaxis during the transfusion, and responded to epinephrine.

The doctors hypothesized that the reaction was due to the donors' consumption of peanuts, and that other similar reactions have occurred, but went unreported due to the lack of an explanation.

And all I can think is, "Really? Another risk with food allergies?"

Denver Ambassador for 2011 FAAN Walk

2011-05-02T11:33:00.000-07:00

I received this from the Denver FAAN Walk chairperson--take a look and see if you might be interested!

Hello all,

It is time to nominate our 2011 Walk for Food Allergy Youth Ambassador!

A reminder that this year's Walk is September 11th and the Ambassador needs to attend the Walk.

Applicants must be 7 or older.....details and application below.

We want someone who can share their experiences in a positive, meaningful way!! The Ambassador Program focuses on the story of a child and their experiences with food allergies at home, in school, and with friends. The Ambassador speaks on behalf of all the local children who live with food allergies.

Applications should be forwarded to me parth_munshi@yahoo.comby May15th. The application is attached.

Please feel free to forward to any and all you know affected by food allergies.

Please feel free to contact me with any questions.

Ambassador Program Fact Sheet

* The Ambassador Program provides an opportunity to increase local awareness and understanding of the effects food allergy and anaphylaxis on children in the local community. The Ambassador Program focuses on the story of a child or panel of children and their experiences with food allergies at home, in school, and with friends. The Ambassador speaks on behalf of all the local children who live with food allergies.

* Ambassadors must be available and willing to share their personal food allergy experiences with the community. Ambassadors may speak at public or organizational events and may be interviewed for radio, television, or print media. FAAN will provide Ambassadors with talking points and key messages for speaking engagements. This commitment will cover the eight–week period leading to the event through the day of the Walk and may include some time after the Walk for follow-up stories.

* Those interested in applying to be an Ambassador for their local FAAN Walk for Food Allergy must submit an application and an essay of 500 words or fewer describing their personal experience with food allergies and anaphylaxis and why they feel they would make the best Ambassador for their community. They should also include any notable public speaking experience.

* The child Ambassador must be at least 7 years old by the submission deadline. A parent Ambassador must have a child with food allergies who is 6 years old or younger by the submission deadline.

* Ambassadors’ expenses, including travel, accommodations, and meals, are the responsibility of the Ambassadors’ families.

Parth Munshi

If you are interested in looking at the application, please email me and I will forward it to you. Thanks! (hendrixemily@gmail.com)

Illinois Test of Basic Meals

2011-04-11T07:10:00.000-07:00

Between Jamie Oliver's Food Revolution and this article about a school in Chicago Public Schools, it looks like some people are pushing a policy that we must allow the schools to feed our children. I have to say, this is one of the more bizarre governmental controls that I've seen. If we can't be trusted to provide our children with a healthy lunch, can we be trusted?

In the Chicago Public School article, the author clearly states that children with food allergies or medical issues are allowed to bring their own lunches. I wonder, though, what about children with food sensitivities, unproven in an allergist's office? What about children who's autism (or other disorder) is more easily managed when certain food groups are eliminated?

The article also states that many children choose not to eat the school lunch, leaving them with no choice but to go hungry. I am quite sure at least two of my children would make this choice on a regular basis, which would leave them starving and me furious! Do you think parents like me could bypass the rule if we have an above average score on the Illinois Test of Basic Meals?

Call me paranoid...

2011-04-05T07:18:00.000-07:00

I just read an article about a girl who had an asthma attack at school. She went to the nurse's office, but the person in the office had no medical training and did not administer her medicine. By the time the paramedics came, she was in cardiac arrest and died a few minutes later.

This article attributed the problem to the staff member's lack of medical training, although I would go a step further and say that the staff member wasn't just lacking in medical training, but in training altogether. The child had a Health Plan which stated exactly what to do in the case of an emergency--why wasn't this simply pulled, referenced, and followed? Every staff member at a school should be capable of doing that.

So, today's To Do List includes visiting with the school nurse to find out who knows how to access the Health Plans and medicine and what happens in an emergency if she is incapacitated. Call me paranoid if you will--but paranoia about mundane things is what keeps my baby alive, after all.

Disney and Food Allergies

2011-03-04T07:20:00.000-08:00

When I saw this article this morning, Disney Awarded For Food Allergy Awareness, it immediately caught my eye. My husband and I took our kids to Disneyland a few years ago. I was very nervous about the trip, because of Sophie's food allergies. We planned to pack in some of our food every day that we were at the park, but we also wanted to eat at some of the restaurants. In fact, as we planned the trip, we decided that we wanted to go to a character breakfast. We found the Disney staff to be accommodating in every way possible. At every restaurant, a chef was available to talk with us about Sophie's allergies. At buffets, the staff was willing to obtain items from the kitchen for Sophie (this was important to me so that we could avoid cross-contamination from people mixing up serving utensils, etc.). We were also offered the opportunity to order items that weren't necessarily on the menu. In every way, the Disney staff demonstrated that they both cared about Sophie's health and just plain wanted her to have a good time. It was wonderful, and I am glad to see them recognized for their efforts.

Massachusetts Restaurants and Food Allergies

2011-02-21T20:53:00.000-08:00

Massachusetts has a new law requiring restaurant managers to become better educated about food allergies. The law also includes requirements designed to make restaurants more friendly to food allergic consumers. After reading an article about it, does anyone else want to move to Massachusetts?

Stuffed Acorn Squash

2011-02-19T19:28:00.000-08:00

I feel like I haven't had time to experiment with cooking much lately, but I made a new version of a recipe my sister gave me tonight and it turned out GREAT! In her original recipe, which I have made and liked, essentially you make chili with sausage in it and put it in the middle of baked acorn squash. The reason I wanted to experiment with the recipe is that I felt like the flavor of the sausage was lost with the chili spices and tomato sauce, which is just a shame! If you're going to stuff your acorn squash with chili, you may as well use ground beef or ground turkey in it instead of sausage.

But I knew sausage and acorn squash would go great together, so I started thinking about other things to use in the stuffing. Here's what I came up with:

Stuffed Acorn Squash a la Emily

Ingredients:
3 medium acorn squash
12 oz. breakfast sausage
2 granny smith apples (diced)
1 14.5 oz. can great northern beans
2 garlic cloves, pressed
salt & pepper to taste

Instructions:
Cut 3 medium acorn squash in half. Scrape out the seeds with a metal spoon. Rinse the insides with water and place face down on a baking sheet. I used one with a Silpat on it for easy clean up later; if you don't have a Silpat you might want to grease the cookie sheet. Bake the squash at 400 F for 40 minutes or so.

In the meantime, brown 12 ounces of breakfast sausage, breaking it up into small pieces while cooking. When it is cooked through, add 2 granny smith apples (diced) and 1 can (14.5 oz.) of great northern beans, with a little water (maybe 2 tablespoons?) to keep it from scorching. Also add 2 pressed garlic cloves and salt and pepper to taste. Cook this mixture for about 5 minutes, until the apples are soft.

Take the acorn squash out of the oven and, using a fork or a spatula, flip each half over. Spoon the sausage mixture into the acorn squash and pop them back in the oven for a few minutes while you get the table set (allowing them to heat through).

Makes 6 adult-sized servings, or 12 for kids (just cut each half into half again!).

Texas Cottage Food Bill

2011-02-17T10:15:00.000-08:00

I don't live in Texas. I don't even live near Texas. But struggles in one state are often found in another, and I am fascinated by the Texas Cottage Food Bill, HB 1139. I think you will be, too, once you know what it is!

Nationwide, there are a variety of laws requiring food to be prepared in a specific manner if it is to be sold to the public. These laws govern everything from what type of countertops are in the prep area to (thankfully) what is printed on the ingredient label. At the same time, many people have cooked something and then sold it. Some of us have only sold homemade goods occasionally, such as at a bake sale, and others sell homemade items regularly, such as jams and jellies at a fruit stand. Homemade goods can pose a problem, such as when Sophie wants to buy a krispy treat at a bake sale, but for the most part, homemade products are great!

Back to Texas; in Texas over the past year or two, authorities have been cracking down on the jam lady at the farmer's market, the lady who bakes wedding cakes at home, and even the Church bake sale in some cases. People who sell homemade goodies aren't hurting anyone, so why are they being shut down? Is regulation necessary in ALL circumstances?

In the spirit of full disclosure, the Texas Cottage Food Bill would require that home-prepared food items have a statement on the label saying, "Made in a home kitchen that has not been inspected by a state or local health authority." As long as the information is provided, it is up to each of us to decide whether or not we would like to partake.

A number of states have already passed cottage food bills, including Michigan and Oregon. It is a boon to entrepreneurs in the cooking world, and to many in the tasting world as well. A teensy part of me wonders about the impact for those with food allergies, but who better to answer questions about the ingredients and manufacturing practices for a product than the person who actually made it? And anyway, I love homemade cookies enough to think that people in Texas and everywhere else should be able to enjoy them.

The Golden Rule of Food Allergies

2011-02-16T14:05:00.000-08:00

A life with food allergies has so many rules that regular people don't have.

Always read labels.
Always read them again.
Keep your Epipen handy.
Be careful eating things that are homemade.
Check your utensils and plates to be sure they are clean.
Watch for cross-contamination.
Don't kiss anyone unless they have just brushed their teeth.

The list could go on and on, and I'm sure you have your own set of rules. Last year I listened to a talk by Dr. S. Allan Bock. He has been involved in the collection of food allergy morbidity statistics over the years, and he shared a key piece of information: all food allergy deaths occurred when patients did not have their Epipens. Most are in the teens and early twenties, and there are other common characteristics, but in every case, there was no Epipen handy. Ever since then, we have lived by the Golden Rule of Food Allergies: Never eat without your Epipen. It's simple--if you eat, have an Epipen nearby. If you don't have the Epipen, don't eat. Even foods that are "always safe" can be contaminated sometimes. So just remember,

Never eat without your Epipen.

New Pamphlet

2011-02-11T20:45:00.000-08:00

The National Institute of Allergy and Infectious Diseases has released a new pamphlet on food allergies. It's very comprehensive, so take a look and consider whether there is someone in your life that might benefit from reading this pamphlet.

Mystery Hives

2011-02-09T08:41:00.000-08:00

Of the possible lifelong illnesses, food allergies aren't too bad. They are manageable--just avoid the foods you're allergic to and everything is fine, right? Except for mystery hives. Mystery hives are the bane of my existence. Those days when Sophie has a rash and an itch and who knows what else, but we examine her diet and there is NO cause, drive me insane. And the thing that makes me even more crazy is when a non-allergic person in our family has hives. Seriously, what is going on here? Starting in September (I remember specifically because the first one was on my birthday), my husband began a pattern of hives. He got 1 to 3 at a time. Usually they were on his hand or arm, although he had some on his abdomen too. We still don't know why. Sometimes when he got them, we'd been out to eat, but other times he hadn't eaten out in days.

A few weeks later, my oldest daughter started getting hives, too, a few at a time. It's been several months now, and my husband's hives have abated--he hasn't had any for at least 3 or 4 weeks. But my daughter's hives are getting worse. Yesterday she showed me at least 12 hives--on her back, abdomen, and shoulders. We have racked our brains to come up with causes, but to no avail. The best I can do is suggest that she use body lotion after her showers to improve the health of her skin and thereby offer it a little more protection. It probably won't make any difference.

:( Mystery hives. :(

Eczema a.k.a. Atopic Dermatitis

2011-02-08T21:09:00.000-08:00

Dr. John Hanifin from Oregon Health & Science University in Portland presented new research at a recent allergy conference about atopic dermatitis. His research suggests that it actually presents before children have food allergies--so eczema and food allergies are linked, but his research leads him to believe that food allergies do not cause the skin condition to appear. The current recommendation is that children with eczema be tested for food allergies, and that their parents should be aware food allergies are more likely to develop in children with eczema.

Granola

2011-02-02T08:41:00.000-08:00

Homemade granola is a delicious breakfast option, and is much easier to make than you might imagine. Making your own granola allows you to customize it for your own tastes and allergies--no fear of cross-contamination here!

Start by taking the syrup portion from a reliable granola recipe. Be sure to make a mental note of the total number of cups of dry ingredients (grains, seeds and nuts) called for in the recipe. Here's what I used yesterday:

3/4 cup cooking oil (I used canola)
1 1/2 cups honey (although I think the result was a little too sweet, so I'll probably use closer to a cup next time)
15 cups of dry ingredients

In a small pot, heat and stir the oil and honey until they combine. Pour over the dry ingredients and mix well with a large spatula (or maybe with your hands, lol!) Spread evenly over 2 large cookie sheets. Bake in a 325 oven for 20 to 30 minutes, stirring every 10 minutes. Granola is ready when it begins to brown. Cool completely and then store in an airtight container.

For the dry ingredients, use your imagination! You can use any combination of grains, cold cereals, puffed grains, and seeds that is safe for you.

I used 8 cups of oats, 2 cups each of Kix, Corn Flakes, Rice Krispies, and 1 cup of flaked coconut. I have tried all kinds of other things, too. My family likes different combinations, so I use whatever I have on hand. Here are some suggestions (please pick things you are sure are safe for you and your family!):

puffed rice
puffed corn
quinoa
rolled oats
cold cereals
sesame seeds
sunflower seeds
coconut
flaxseed

Another way to spice up your granola--literally--is to add powdered spices to it. I like to mix the spices into my grain/seed mix before I add the syrup. Try adding one of these:
1 Tbsp. cinnamon
1 tsp. ginger
1/2 tsp. nutmeg
Or something else you think up on your own!

After your granola is mixed, baked and cooled, you can add dried fruit--anything that sounds good to you. Dried apples and raisins are delicious with cinnamon granola. An alternative to dried fruit is to eat your granola with fresh fruit and milk or yogurt made from a source that is safe for you (cow's milk, soy, rice, etc.).

Enjoy!

Code RED!

2011-01-18T11:17:00.000-08:00

My mom alert has moved from code yellow, which is sort of a normal parent-of-4-kids level, to orange, maybe even red. What would cause such a thing? It all began on Wednesday...

A fairly normal afternoon; I was in a meeting. Sharon agreed to pick up Sophie and Maggie from school. My meeting ended, and after checking in with Sharon, I ran a few errands before heading home.

Several hours later, Sophie told me this: at school, her teacher gave out some candy that someone had given her. Sophie debated about whether or not to eat it, since she hadn't read the label and wasn't familiar with the candy, and decided to go ahead. (This was mistake #1.) Then she started feeling sick--itchy throat and a stomach ache. Here's where mistake #2 came in--she didn't ask to go to the nurse, because it was almost time for school to get out.

This situation is pretty much my worst nightmare. And it's a classic kid situation, right? I remember when I was a kid, I would do one stupid thing, and then because I was feeling panicked about it, I couldn't think clearly and I would follow that right up with a second stupid choice. The problem is, in Sophie's case, this could have been life or death. If that candy had pecans in it, she would have started anaphylaxis. And since she didn't tell the teacher she thought she was having a reaction, even if she had some big symptom, her teacher might not have known what to do. AARGH!!

So what's next? I talked with Sophie about 2 big points:

1. Don't eat anything unless you have read the label. (And this has been our rule for ages, so I was surprised that she ate the candy in the first place.)

2. If you think you might be having a reaction, get to the nurse no matter what. Even disobeying the teacher to go to the nurse would be better than sitting in the classroom waiting to pass out!

I also talked with her teacher to make her aware of the situation. She didn't think Sophie had eaten the candy, because at first she just set it on her desk. Even so...

And I will be having another conversation with Sophie about this later, as will my husband. I don't want to scare her, but she needs to see this as potentially life or death, or she will be in a situation that is life or death sometime down the road.

In the meantime, I think Code Orange (verging on Red) works for me. I'm going to hang on to it for a little while.

Will food allergies limit you?

2011-01-13T11:17:00.000-08:00

Reading about Tom Poti, defenseman for the Washington Capitals, and his food allergies has put me in a thoughtful mood. His relaxed attitude about the food around him at a luncheon, and his comments to his interviewer, demonstrate exactly what I hope Sophie can feel as she grows up with food allergies. It is clear from the article that he has a strong support system within his family and in his professional life. The thing that stands out the most, however, is that he is a professional sports player. His food allergies did not prevent him from pursuing what must have been a dream for him. Nor should they! But I have the sense that they could. It seems that the time and energy involved with food allergies could interfere with other pursuits, or that food allergies could affect a child's self-esteem or comfort in social settings to a degree that might limit pursuit of a dream. Congratulations to Poti's mom and other support people for giving him the tools he needed. And most of all, congratulations to Poti for living your life, your way!

Threshold Research

2010-12-27T14:46:00.000-08:00

University of Nebraska Lincoln has a division called the Food Allergy Research and Resource Program. Their program has done a number interesting projects. One of their current projects is studying how much of a food allergen is too much--in other words, how much can an allergic person ingest before an adverse reaction occurs?

I know from Sophie's experiences that not every exposure results in a bad reaction--some exposures result in no discernible reaction. So how do you go about finding what the exposure threshold is?

The FARRP team has analyzed data based on challenges at a large food allergy clinic to begin determining what the threshold may be for peanut allergies. Obviously there's a great deal of additional research and analysis necessary in order to come to any real conclusions about allergic thresholds.

I had a few questions as I read about the study, and I was able to contact Professor Stephen Taylor for some additional information.
Me: Is the threshold different for different people?

Professor Taylor: Yes, absolutely. The range of individual thresholds is amazingly broad. For peanuts where we have the most information, individual thresholds (as defined by lowest dose provoking a mild objective reaction) range from 0.4 mg up to above 8 g (expressed as whole peanut). Since an "average" peanut weighs about 350 mg, some with an individual threshold would have to eat 20 peanuts to experience symptoms.
Individual thresholds may also vary with age over time. This does not appear to happen for peanut in most individuals so it is a life-long affliction. But many infants with milk allergy will ultimately become tolerant - outgrow their allergy (not all of them do unfortunately).

Me: What symptoms are considered a "reaction" and is this standard being universally applied?

Professor Taylor: Great question. Not everyone uses the same definition of a reaction. We are currently seeking consensus. But, our group uses the first signs of an objective reaction (something the physician can see such as a hive or two, lip swelling, flare of eczema, etc.). We have one exception to that definition and we also recognize abdominal pain (a subjective symptom) as a credible sign especially in infants. Other groups use the first subjective symptom (mouth itching, stuffiness, etc.) as the definition of a reaction. We know of one group that requires 3 or more hives as opposed to just one (which is fine in our definition).
In all of these definition, the signs and symptoms would spontaneously resolve within 15 minutes without any pharmacological treatment. It would be quite unethical to continue with challenge doses to determine the amount needed to provoke a more serious reaction.
In our opinion, the first sign of a mild objective reaction is the most universal and consistent definition. Subjective symptoms appear to be more dependent and variable depending upon the physician/nurse doing the challenge.

Me: If thresholds are established for each allergen, in what ways will this complicate the process of consumers determining safe foods? Since allergies tend to have a cumulative effect (for example, a consumer may eat more than one food at a single meal with a "below threshold: does of their allergen), will consumers opt to maintain their zero exposure standard, rather than risking a reaction based on the cumulative effects of eating multiple foods?

Professor Taylor: For most IgE-mediated reactions, symptoms are immediate (within 2 hrs) and not cumulative. We are only seeking to define thresholds for these immediate hypersensitivity type of reactions. This approach would not be applicable to more delayed conditions where cumulative doses might matter (still unclear) such as eosinophilic esophagitis, ulcerative colitis, celiac disease, etc.
The idea is to establish population thresholds (e.g. for all peanut-allergic individuals) that would be safe for the vast majority of all consumers with a particular food allergy. We are currently in the research phase. Consensus has not been reached on any of those population thresholds. Obviously, this must be approached with great care and consensus must be sought. Consumer groups such as the Food Allergy & Anaphylaxis Network must be included in reaching consensus but we have only now initiated the beginning of that process because we are still in the research phase. Scientists have a lot of individual threshold data for peanut, milk, and egg but lesser amounts of data for other allergenic foods. Thus, we may need to generate data before we can even think about thresholds for all allergenic foods.
How will thresholds affect consumers? I cannot be sure at this point. Our goal at the moment is to use population thresholds to guide industry use of precautionary/advisory labels (e.g. may contain peanuts and the like). With no guidance on thresholds, the food industry tends to apply such labels to products on a rather wide scale. Many of these products contain no detectable peanut or milk (the ones that we have looked for) using assays that would detect amounts below any known threshold dose for individuals.
Consumer behavior regarding thresholds is another unknown. Obviously, consumers will need to trust that these levels are safe. That is why widespread consensus is so important. We recognize that communication with allergic consumers is ultra-important on this subject but it is probably premature to make a major effort here until the scientists reach some level of consensus. But ultimately the consensus needs to include consumers, physicians (allergists), public health agencies (e.g. FDA), the food industry, and the research scientists.
I realize that consumers make every attempt to adopt a zero exposure standard. Until thresholds are established, they have no other choice to stay safe. But, recognize that the real goal is safe and not zero.
As we establish thresholds, we do need to take many factors into account - individual differences, possible exacerbating factors (such as other illnesses, exercise, medications, pollen season, etc.), and certainly the ingestion of multiple foods in a meal. All of that is part of the ongoing discussion. Again, rest assured that everyone has the exact same goal - safe foods for allergic consumers.

I am thrilled by this research and eagerly look forward to watching the progress of this group.

Good News in Eating Out with Food Allergies

2010-12-22T15:18:00.000-08:00

According to Restaurant.com, "The top 10 menu trends for next year will be locally sourced meats and seafood, locally grown produce, sustainability as a culinary theme, nutritious kids' dishes, hyper-local items, children's nutrition as a culinary theme, sustainable seafood, gluten-free/food allergy-conscious items, back-to-basics cuisine and farm-branded ingredients."

Gluten-free and food allergy conscious items made the top 10 new menu topics! I can't wait to see what menu changes or new restaurants will open up in my area!

Katelyn Carlson

2010-12-22T13:38:00.000-08:00

My heart goes out to the family of Katelyn Carlson, the 7th grader who died of anaphylaxis on Friday at school. She attended a public school in Chicago, and was known to have a peanut allergy. The cause of her allergy attack hasn't been released, and perhaps isn't known. It has been widely reported that the class was eating food ordered from a local restaurant, and some believe that may be the cause of her reaction, but another peanut allergic student was in the classroom and there has been no mention of that child having a reaction.

I wish I knew more about what precautions had been taken and what went wrong for Katelyn. I feel ill at ease, knowing that Sophie faces this danger every day at school, and even today playing at a friend's house. Food allergies don't take many lives, but any preventable death feels like a tragedy.

May the Carlson family and friends have peace at the Christmastime. Their daughter is surely in a better place.

FAAN and NYSE

2010-12-17T22:01:00.000-08:00

According to a recent press release from FAAN, "FAAN’s (the Food Allergy & Anaphylaxis Network) CEO, Julia Bradsher, will ring the New York Stock Exchange (NYSE) Closing Bell, joined by FAAN’s Board Chair Andrew Gilman and his son Sam, as well as FAAN Ambassador Who Cares Chef Ming Tsai and his son David."

Chef Ming Tsai, as well as being a chef, is a spokesperson for FAAN. His son has food allergies. With his experience as a chef and as a father, he is able to give advice about eating out and has worked to increase food allergy awareness and compliance with regulations.

I wish I knew how FAAN got this set up--more of the story, so to speak!

New Food Allergy Diagnostic Guidelines

2010-12-11T21:55:00.000-08:00

A few days ago I first saw a news story about new diagnostic guidelines for food allergies. One thing I found surprising is the difficulty of locating the actual guidelines. Multiple news stories stated that the guidelines came from the American Academy of Pediatrics, when they were actually issued by the National Institute of Allergy and Infectious Diseases. The summary for clinician use is available now, and a summary for patient/parent use will be available soon.

The important highlights in my view are as follows:
Diagnosis of IgE mediated Food Allergies needs to be based on Food Elimination diets and Oral Food Challenges. Skin Prick Tests and Allergen Specific Serum IgE Tests can play a part in diagnosis but cannot be the sole piece of information. Intradermal Tests and Atopy Patch Tests are not recommended for use in food allergy diagnosis, even in conjunction with other tests. There are a number of other tests listed as not recommended, most of which I've never heard of, including something called Hair Analysis. Regarding non-IgE mediated allergies, the recommendation is to rely mainly on medical history.

Management of food allergies is recommended to consist of avoidance of the allergen. "There are no medications currently recommended by the EP
to prevent IgE-mediated food-induced allergic reactions from occurring in an
individual with existing FA." It's important to note that there is no strategy for management of food allergies other than complete avoidance.

Prevention of food allergies is addressed as well--and essentially there is no recommended strategy. Avoidance of common allergens is not recommended during pregnancy or breastfeeding, and it is also recommended that starting solid foods is not delayed in children at risk for food allergies.

I find this document fascinating. It is, of course, based in current data and research, and there are a few new pieces of information. I still think it was worthwhile for me to avoid allergens while I was nursing my 4th child (the one after Sophie!), even if these doctors aren't sure it makes a difference. It gave me the assurance that I did what I could to prevent her from having allergies. And anyway, she doesn't have any food allergies, so I suppose I could sat that it worked. ;)

The Good Side

2010-12-03T13:59:00.000-08:00

We so often hear about injustices and negatives associated with food allergies, and this article highlights a positive allergy related experience. I hope this can inspire all of us to take a minute to think about the positive experiences that we've had related to food allergies.

http://www.livingwithout.com/blog/scoring_for_food_allergic_kids-2305-1.html

Mother's Intuition

2010-11-05T07:56:00.000-07:00

Last month National Jewish in Denver issued a press release about their "new" findings that asthma might be caused by food allergies in some people. But mothers of food allergic children could have told you this years ago.

"Our study suggests that food allergies may be an important factor, and even an under-recognized trigger for severe asthma exacerbations. People with a food allergy and asthma should closely monitor both conditions and be aware that they might be related," said Andrew H. Liu, a lead research with National Jewish.

The press release also states that, "Researchers could not determine if food allergies actually cause asthma attacks or if asthma and food allergies are both manifestations of a severe allergic profile. They speculated that food-allergic reactions might be triggered in some people with asthma only when combined with strenuous exercise." You can read the rest of the article here.

Seriously? I could have told you all this and more. In fact, I can tell you that food allergen exposure can absolutely cause asthma attacks. Sophie got to the point with her wheat allergy that every single time I boiled pasta made from wheat, she had an asthma attack. Every time! And she almost never has an asthma attack without an allergen exposure. I suspect that if the allergen is atomized by boiling it or using another similar technique, and the food allergic person breathes in the atomized allergen, most people would present with an asthma attack.

I'm glad to see that medical science is catching up with mother's intuition slowly but surely.

What to Eat Between the Holidays

2010-11-02T18:01:00.000-07:00

With the passing of Halloween, we are now in the midst of the holidays, and all of the busy-ness and craziness that come with them. At times like this, it's important to have some quick go to meals--things you can keep on hand and throw together in just a few minutes. This one is top of the list for my family:

Mexican Beef with Rice

Ingredients:
2 1/2 cups white rice (or 2 cups brown rice)
5 cups water
1 15 ounce can tomato sauce or diced tomatoes
1 lb. of browned ground beef (I actually use ground turkey)
1 tbsp. chili powder
1 tsp. cumin
1 tsp. garlic powder
1 tsp. salt

Put all ingredients in a big pot or a rice cooker (not steamer) and bring to a boil. Simmer until the rice is done.

Toppings:
tomatoes
lettuce
black beans
salsa
avocados
or use your imagination...

Holiday Specialties

2010-10-29T07:02:00.000-07:00

The holidays are just around the corner, and it seems at this time special holiday recipes and family favorites come up that we don't even think of the rest of the year! Often these special holiday favorites will require special holiday ingredients. To find groceries that suit your food allergies, I suggest using my Sophie Safe Food Guide. If you're looking for safe baking chocolate, and you're allergic to milk, wheat, corn, peanuts and eggs, you can build a profile with your allergens, then search the category called "Chocolate Chips." The Food Guide will show that Enjoy Life, Saco, Sunspire, and Baker's all make chocolate chips that should be safe for you.

Of course, you should always read the label, as the package may have additional or different information from what's been posted online. And you are responsible for your own food choices. Which will hopefully be made simpler by the awesome allergy grocery finder, the Sophie Safe Food Guide!

Halloween How To's

2010-10-26T12:30:00.000-07:00

If you're looking for suggestions on how to manage Halloween candy--whether managing the allergies or the sugar is you focus--check out last year's post on Halloween candy!

Halloween Treats

2010-10-25T20:57:00.001-07:00

If you're looking for some goodies to celebrate Halloween, and you have my cookbook, here are a few things that we like to make around this time of year:

Pumpkin Muffins
Pumpkin Pie Morsels
Oatmeal Cookie Cutouts (Cut out and decorate little pumpkins, or use your gingerbread cookie cutters but decorate them with the skeletons!)
Zucchini Bread
Chocolate Zucchini Muffins
Shepherd's Pie (Make the bottom layer and the mashed potatoes and then
shape them like a ghost on each plate instead of baking it. Use peas
for the ghost's eyes.)

Enjoy!

Food Allergy Manners

2010-10-21T19:06:00.000-07:00

A few days ago, Ask Amy with the Chicago Tribune published a question regarding food allergies. You can read it here:

http://www.chicagotribune.com/features/tribu/askamy/ct-sun-1017-amy-20101017,0,7880316.column?page=2

The writer describes a situation in which she avoided dishes at a dinner party rather than inconvenience her hostess by letting her know about the allergies ahead of time. In a similar situation, what have you done or what would you do? I think I have always informed hosts of Sophie's food allergies, and consulted them on the least obtrusive way to accommodate them (and I always offer to supply the accommodations as well!).

What do you think?

Kosher Nation

2010-10-20T22:29:00.000-07:00

Kosher Nation by Sue Fishkoff has a fascinating premise--that of those who purchase Kosher foods, the majority are, in fact, non-Jews! Among the non-Jews buying Kosher, people with food allergies make up a large percentage. I've often wondered what the various Kosher symbols mean and how food "becomes Kosher," and for that reason, this book is definitely on my to-read list. The publisher recommends it for "anyone interested in food, religion, Jewish identity, and big business," so I'm sure this book will fascinate me!

Think F.A.S.T.

2010-10-16T22:17:00.000-07:00

I don't always peruse the food allergy news to the North, but I had a minute to do so today and I love this new acronym that the Ontario Medical Association and Anaphylaxis Canada have put together: Think F.A.S.T.

"F.A.S.T can include any of the following:

* Face: itching, redness, swelling
* Airway: trouble breathing, swallowing, speaking
* Stomach: pain, vomiting, diarrhea
* Total body: hives, rash, weakness, paleness, sense of doom, loss of consciousness." (https://www.oma.org/Mediaroom/PressReleases/Pages/ThinkFAST.aspx)

The focus of the campaign is to increase readiness of the general population to support those with food allergies through their ability to recognize a reaction. This is especially important for parents--you never know when your child will bring home a friend with food allergies. I love that it is easy to remember and it covers all of the main symptoms of anaphylaxis.

So what should you do if you spot F.A.S.T. symptoms? Administer epinephrine and call 911 if a child is experiencing symptoms in 2 or more areas of the list, or if a single symptom is worsening rapidly or severe on its own, such as difficulty breathing.

EpiPens in first aid kits?

2010-10-12T10:32:00.000-07:00

Well, I haven't seen Epipens in first aid kits yet, but I think it's coming. Chances are good that if you ask around, you'll find that you know someone who is allergic to bees. And chances are also good that they don't carry epinephrine, even when they're engaged in outdoor activities that put them at risk for a bee sting. (I'm not talking about robbing a beehive here, folks, just going out for a hike, or a picnic, or even to the park.) But feeling safe won't protect you from a fatal reaction if you are stung by a bee and help is too far away. Which is why I think that Epipens should be in first aid kits on guided hikes, sleep away camps, and other similar situations.

It seems like others (like the people who get to make these kinds of decisions) are moving closer to the same opinion, based on this report:

http://www.newdesignworld.com/press/story/183980

In a meeting of the Wilderness Medical Society it was recommended that personnel who are otherwise trained to administer emergency medical treatment should be trained to administer Epipens as well. There may be some legal questions with implementation, so the WMS also recommended that organizations should obtain legal counsel concerning Epipen administration by lay persons in a time of need. Currently, WMS asks that individuals carry their own Epipen, and are supporting the idea of staff being trained to administer it. But in my mind, this is only a couple of steps away from including epinephrine in first aid kits. And that is a good thing.

Birthday Treats at School

2010-10-10T10:44:00.000-07:00

The question of how to handle birthday treats at school comes up every year for Sophie. Occasionally parents will make the effort to find out what they could bring that she could have, but like many other kids with food allergies, our fall back solution is a box of safe treats kept by the teacher for those surprise birthday celebrations. This year is much the same. But it might not be that way for allergy kids forever...

My younger (non-allergic) daughter has a September birthday and she wanted to bring a birthday treat to share with her class. I had heard that there is a child with allergies in the class, but I don't even know his/her name. Being a procrastinator by nature, I didn't even think about asking the teacher about the child with food allergies until the day of--too late to contact a parent and buy an appropriate treat. Instead I suggested to my daughter that she choose a little toy to pass out instead. She brought bouncy balls--one for each student in the class--and the other kids LOVED them.

The next week, another student had a birthday, and he brought toys instead of food as well. A new trend perhaps? One can always hope!

Flu shots for people with food allergies

2010-10-06T09:33:00.000-07:00

It's that time of year again, when people are getting their flu shots. Or they are getting their flumist. And the doctors lecture about how important it is to get, especially this year (why especially this year?). Over the last few weeks all 4 of my children have had their well-checks. 2 got a flu shot, 1 opted for the FluMist, and 1 is allergic to eggs. Last year I thought I would have her get the FluMist since she can't have the flu shot without taking extra precautions, but Sophie also has mild asthma, which is a contra indicator for the FluMist.

Our pediatrician recommended having a skin test at the allergist's office to determine whether Sophie will react to the shot, which is cultured in eggs. I have never been brave enough to go this route. I'm not worried about the skin test, but if she fails the skin test, she can get the shot "in doses", which essentially means getting 4 or so shots over a several hour period. It's just not my idea of fun! However, I am going to try it this year, after reading this article from Johns Hopkins:

http://www.newswise.com/articles/flu-vaccines-are-safe-for-most-allergic-children

For those of you with egg allergies, what is your approach to the flu shot? What is your experience?

Food as a Weapon?

2010-09-29T19:07:00.000-07:00

Food as a weapon? Sounds a little far-fetched, depending on your experience. But for those of us who have swelled up at the touch of a nut or other allergen, or seen someone close to us do the same, it is easy to imagine. Unfortunately, it is also easy for school age children to imagine. A recent study published in the Annals of Allergy, Asthma & Immunology reports on the frequency of bullying targeting children with food allergies. According to the survey data, approximately 25% reported negative interactions with other children focused around food allergies. And of those, 1/3 experienced physical bullying regarding their food allergies.

Although we weren't contacted for this study, Sophie falls in that last third. Thankfully, she has only been physically targeted once, but once is certainly more than enough when it comes to this kind of thing.

When Sophie was in 1st grade, a girl she didn't know sat down next to her at lunch. Sophie's food allergies came up in conversation, and the girl held up a cookie from her own lunch, asking, "Can you eat this cookie?" When Sophie said, "No, it probably has wheat and eggs in it," the other girl put the cookie down right next to Sophie's food, getting crumbs all over the place. Sophie was shaken by the incident. She decided she was finished with her lunch anyway and hurried outside to recess.

Thankfully, that afternoon she spoke to me about the incident and I had the opportunity to speak with her teacher. Her teacher was furious and quickly took steps to educate the child about the seriousness of the action.

In this case, we don't really know if the "bully" understood the potential damage she could inflict. Sophie interpreted her tone as negative, but without another witness we couldn't say for sure. But in other cases, intent seems much more clear. There have now been several cases in the United States in which the bully has actually been arrested and charged with a crime for food allergy related bullying.

On the surface, bullying is bullying is bullying. But the fact that many adults, including those in a position of authority at schools, underestimate the severity of food allergies increases the risk for the targets of food allergy bullying. Threatening a child with a food he or she is allergic to is tantamount to threatening that child with a loaded gun. Both can kill, and equally quickly.

Decisions, decisions...

2010-09-16T09:58:00.000-07:00

How do we make decisions that affect our children, especially with food allergies? When trying to negotiate their schooling, classrooms, socials events, friends, how do you decide when to speak up and when to let things take their own course? As I look back over my decisions as a parent, I think there are a couple of major things that I considered (or wish I had!) to aid me in decision making.

1. Health/Endangerment: is this situation putting my child in the way of physical harm? Is my child likely to end up in the hospital if this situation continues?

2. Emotional/Spiritual Health: is this situation likely to cause my child emotional damage? Will this situation adversely affect my child's spiritual growth?

3. Discomfort: will my child be extremely uncomfortable in this situation?

Balanced against possible benefits, these questions can guide us as parents as we try to navigate things like:

Should I send my child to spend an afternoon with the aunt who doesn't believe in food allergies?

Do I need to stay with my 7 year old at a classmates birthday party?

Should I become homeroom mom and coordinate the daily snacks again this year?

Does it makes sense to take my child to the doctor on day one of her fever, or should I wait?

Should I let the doctor give my child the newest vaccine, or this year's flu shot?

After considering the options, benefits, and drawbacks, I have found it is often helpful to ask one more question:

Who does this decision benefit, and am I okay with that?

Looking back, I realize that I sometimes have made decisions about caring for my children that were for my benefit, or a decision about one child that actually benefits another child more. While it is important to do what's best for the whole family, I also like to be aware of why I have taken certain actions. I believe motives can be as important as actions, so I try to be sure that my motives are in line with my values and goals as much as possible.

As a parent of a child with food allergies, I find that my decisions inherently have more potential damage than they did before Sophie was born. If you have found that to be the case as well, I hope you will benefit from my decision guidelines.

Food Bans

2010-09-01T18:07:00.000-07:00

(Please note that I realize that my views do not cover every possible scenario, and I also realize that younger children may have different needs.)

I have thought a lot about food bans in schools, since Sophie has food allergies and since our school has considered a food ban. I am personally not in favor of food bans. I have three basic reasons to oppose them. First, a food ban is unnecessary for most people with even severe food allergies. Second, a food ban creates a false sense of security for those who do have an extremely sensitive allergy. Third, other measures would be more effective in preventing classroom contamination than a food ban.

Food bans--completely eliminating a particular food or food group--are unnecessary for most people with food allergies. Very few people over the age of 4 will have a reaction solely based on the presence of their food allergen. There are many anecdotes about reacting when a sibling ate a peanut butter cup or other similar things, but in reality most children will not react unless they come into direct contact with the allergen. In the rare instance that a child does struggle with allergies after eating with other children, special arrangements might be made for that child to eat in a separate area.

In the event that a food is prohibited from a school (or other environment), it can create a false sense of safety because, in actuality, it is nearly impossible to monitor or enforce a ban like this. While children may move away from peanut butter sandwiches, they will continue to bring other items containing peanuts, such as granola bars and cookies. A situation could easily arise where an allergic child makes an assumption of safety about foods that are contaminated. Additionally, banning a single food, like peanuts, will not solve food allergy problems for most schools. Most children have more than one food allergy and peanuts are not necessarily their biggest concern. Should we start banning multiple allergens from schools?

There are several alternatives to food bans that should be considered. Schools can designate specific areas for eating, and allow food only in those areas. One model might be that children eat all of their snacks and meals in the lunchroom. For a school with no lunchroom, all food could be consumed at the child's own desk. In both scenarios, the areas would be cleaned immediately after every meal. Schools can also institute hand washing before and after lunch, to prevent contact with allergens on the playground and in other areas of the school. Another possibility is to institute partial bans; based on the allergens affecting each classroom, ban the offending foods for that classroom only.

These alternatives to the whole school peanut ban are easier to implement and enforce, can be customized for the needs of the particular student, are less restrictive to the students in general, and model solutions that are more adaptable to the outside (of elementary school) world. In the long run, I believe that students with food allergies will be safer and better equipped to manage their food allergies if these types of ideas are utilized in place of the more generalized food bans.

Sally

2010-08-24T04:47:00.000-07:00

I first met Sally...well, I actually haven't ever met Sally in person. But Sally is one of my online friends. She contacted me shortly after Sophie Safe Cooking was published, because we have a common goal: to LIVE with food allergies.

At the time that Sally and I first "met" she was writing a blog called Aprovechar, in which she discusses the dietary changes she has made over the years, why she made changes, and the benefits she's experienced as a result. She has had other projects over the years as well, but her newest one is a culmination of all of those:

http://tilthforhealth.com/

As you explore Sally's new website, you will find beautiful and inspiring photography (did I mention that she's an artist, too?), stories of lives she's helped to change, and resources to help you change and improve your food world.

Thank you, Sally, for encouraging others, and especially encouraging me, on our continued journey through food!

Bandwagon

2010-08-20T11:58:00.000-07:00

Most of the time, I don't really like to get on the bandwagon. I would rather ignore whatever the latest bandwagon is until I have time to research the topic and decide my own opinion. So it is with reluctance that I am getting on the Joel Stein Bandwagon.

Joel Stein? Who's that? Joel Stein is a columnist. He wrote a rather inflammatory column which was published in the Los Angeles Times in January, which opened with this line: "Your kid doesn't have an allergy to nuts. Your kid has a parent who needs to feel special." This was followed with lots more nonsense about food allergies.

Lots of food allergy bloggers and writers were angry. (Surprise, surprise!) But then something sad happened--Joel Stein's little son Laszlo had an allergic reaction after eating mixed nuts. This wasn't your 5-hives-and-an-itchy-mouth type reaction, either. Joel describes it like this, "Laszlo started sneezing, then breaking out in hives, then rubbing his eyes, then crying through welded-shut eyes, then screaming and, finally, vomiting copiously at the entrance of the Childrens Hospital emergency room..." Having seen Sophie like this, its enough to break my heart. And clearly, Joel has learned a little--he wrote a new article in which he explained his new point of view.

Normally, at this point I would still be completely ignoring all of this. After all, what we have here is some guy who doesn't know squat about food allergies and said some stupid things, after which he learned a little about food allergies. Here's the problem: now all those food allergy bloggers who were mad before are writing about karma and nut free schools and 20 other related things, all mean-spirited.

BACK OFF! We need to give this guy some space! He is still learning about food allergies and what that's going to mean for his kid and his life. All of us can look back on our early days and we can see that there is a learning curve with food allergies. I made mistakes; I'm sure you did too. But unless Mr. Stein makes mistakes that endanger his son, it's nobody's business. And even then it's up to his wife and social services and a doctor to sort out, not the public! So let's not worry about whether he's going to exclude nuts from his house. And let's not worry about his son's school and classroom. Let him, his wife, and their doctors manage Laszlo's allergies.

Every kid is different. Their allergies are different. Some kids can sit next to someone eating peanut butter with no problems. Some kids have to leave the house if there is pasta boiling to avoid reactions. Let's allow the Stein family to determine how to manage Laszlo's allergies, just as we were allowed to choose for our own children.

Pecan Reaction 2005

2010-06-22T18:54:00.000-07:00

When Sophie was 3 years old, our allergist lifted his ban on certain foods for her. Because of the number and severity of her allergies, he had previously restricted her from having tree nuts, fish and shellfish, even though she had no history of reactions to them. After she turned 3, he felt that this restriction was no longer necessary.

Knowing that pecans are a favorite of basically everyone in our family, my husband and I decided to try pecans first. On an afternoon when we were both home, we gave Sophie one pecan half. She chewed and we she began to swallow, she said, “My mouth is burning!” I immediately gave her a double dose of Benadryl. Within 5 minutes, she had huge welts following her lymph track and she was struggling to breathe. I guessed that we just needed to help her breathing until the Benadryl took effect (usually about 20 minutes). Based on that we decided to administer her inhaler and followed up a few minutes later with a nebulizer treatment.

After a few ups and downs, her breathing eventually returned to normal and we were able to continue with our plans for the rest of the day. In hindsight, I think I should have administered the Epipen. She had 2 body systems reacting: skin and respiratory. Her symptoms were responsive to treatment but only temporarily; breathing difficulties resumed within a few minutes of administering albuterol. I did not have the proper equipment to be able to determine other warning signs, such as blood pressure dropping. I am grateful that Sophie pulled through—we were certainly blessed—and given another similar situation, I would just give her the Epipen and go to the hospital.

Wheat Challenge 2003

2010-06-21T23:55:00.000-07:00

Wheat challenge--#1
As we prepared to go to Sophie's wheat challenge a few days ago, a scene replayed through my mind again and again...Sophie first wheat challenge. She was 1 year old. Her blood tests indicated that she was likely to be able to pass a challenge. At the time, I was desperate to have her dietary restrictions loosened, since I had very few recipes that worked with her long list of allergens.

We did the challenge at the doctor's office, of course. Sophie cooperated readily with eating the Cream of Wheat. She ingested several doses without a problem. About an hour into the challenge, she was tired and falling sleep in my arms. This seemed natural, since it was mid-afternoon, nap time to a toddler. Just as the nurse was preparing her next dose of Cream of Wheat, Sophie lifted up her head, vomited all over me and herself, and hives broke out all over her arms and face. As suddenly as her reaction occurred, this wasn't the scary part.

Several hours later, after we had endured observation, picked up her sisters, and made it home, I noticed that Sophie's bottom was red and tender looking when I changed her diaper. Thinking that a bath was in order, I ran some water and stuck her in the tub and then realized that we had a real problem. Sophie had red welts on her abdomen as well, and when I put her into the water, she tried to lay down, like she was going to sleep. This may be normal for some toddlers, but not for Sophie—giving her a bath usually means I get a shower too from all of her splashing and playing.

I later learned that Sophie was experiencing part two of a biphasic reaction to the wheat she had earlier ingested. I don't know a lot about what causes biphasic reactions, but the timing of the second phase suggests that it was triggered by wheat remaining in her system after the Benadryl she was initially given had worn off. Some 24 hour Zyrtec and a nebulizer treatment quickly got Sophie back to wiggling free and running to play, but when we prepared for a second wheat challenge, I kept coming back to this second phase of that reaction. Surely an older, more vocal Sophie would tell me before things got so bad, right?

What happens during a food challenge?

2010-06-21T21:28:00.000-07:00

There are probably some variations in the methods used for food challenges by various offices, but our allergist's procedure has been standard in the 7+ years that we've worked with him. Sophie had her first food challenge when she was 1 year old, and she had her most recent challenge a few days ago, and they were much the same.

For almost all of our food challenges, we were asked to provide the food. The exception to this was her peanut challenge, where the RN used peanut butter that she keeps at the office for those challenges. For Sophie wheat challenges, both times we were instructed to bring Cream of Wheat and some sugar to make it more palatable. When we arrived at the office, the RN prepared the Cream of Wheat. And then we began.

Dose 1: A tiny amount (approximately 1/8 tsp.) of the food was placed on Sophie's tongue. With peanuts, the RN touched the food to her tongue and then scraped it off, but with milk and wheat she was instructed to swallow it. We then watched for signs of a reaction for 10 to 15 minutes.

Dose 2: Sophie was given slightly more of the food, maybe ¼ tsp. And again, we waited to see if she would react for about 10 to 15 minutes.

Doses 3+: Each dose was larger than the previous dose. The size of the final dose depends on the food being tested. For Cream of Wheat, Sophie ate the entire bowl by the time we were done. After eating the large final amount, we waited for about 30 minutes at the office for her to react. Since she didn't, we got to go home with wheat removed from her list of allergens! The whole process takes about 2 hours.

It is vital for people with a history of serious food allergies to do their food challenges with a physician at his/her office. If Sophie had started to react at any point during the process, the RN and allergist have an abundance of medications available to treat her symptoms, as well as the requisite experience to know how she should be treated. Had there been a problem, they could have administered any combination of Benadryl, steroids, albuterol, and epinephrine, based on her symptoms. Never try a food challenge at home, even if you have medications there. Our experience with Sophie's reaction to a pecan reaffirmed this for me!

Wheat is a food again!

2010-06-17T17:15:00.000-07:00

Today we went to the allergist's office to have a food challenge for wheat. Based on last week's (or was it the week before last?) skin tests, our allergist felt really confident that Sophie would be able to eat it with no problems. We arrived a little before 1:00. At 2:30, Sophie had eaten an entire bowl of Cream of Wheat, and was still feeling great. At 3:00, we said goodbye to our doctor and the RN who administered the challenge, and drove home knowing that Sophie can now eat wheat. And, in the space of 2 hours, wheat became a food again.

??Tree Nut Cross-Reactivity??

2010-06-04T12:46:00.000-07:00

Today was Sophie's annual allergy exam. Sophie wants to try to eat some tree nuts, so she had skin tests for some of the tree nuts today, and she had a definite negative to almonds.

BUT

Our allergist wants her to continue to avoid all tree nuts, because of cross-reactivity. And what is cross-reactivity? Well, apparently all tree nuts are very similar in their protein makeup, so if you're not allergic to almonds, and you eat them 100 times with no reactions, but your 101st time you might have a reaction anyway.

So, we are trying to sort this out. Have any of you had any cross-reactions to things that were not your allergies? Tell us about it.

Mobility and Allergies

2010-06-04T12:35:00.000-07:00

Since I've been on this trip down memory lane, today I'd like to detail what was perhaps the most difficult time since Sophie was diagnosed with food allergies. You might think that the first weeks or months were the hardest, and in some ways I suppose they were. However, Sophie was diagnosed at 3 months old and I think that things became most difficult when she was about 8 months old. Why after 5 months of adjustment time was I suddenly going crazy with worry over her food allergies? Because at about 8 months old, Sophie became mobile.

That's right, mobility is a problem with food allergies. Maybe not for every kid with food allergies, and maybe not in every food allergy family, but in ours, it was a problem. With 2 older siblings, who were still relatively little kids, sometimes food was dropped on the floor. And Sophie liked to eat it.

The severity of this problem really hit home to me one day when my husband called from work. It was about 10:00am. In response to his casual, "How's it going?" I burst into tears and said, "I just swept the kitchen floor for the 9th time!"

I realized that I needed to make some changes in order to emotionally survive this point in Sophie's life, so I stopped giving the other kids crackers and other unsafe foods, so that I didn't have to worry about crumbs as much. And of course Sophie began to understand her allergies as she got a little older and I stopped worrying so much.

Doctors are not infallible...

2010-05-27T21:15:00.000-07:00

Doctors are not infallible, and it's important that we know it even if they don't. The intuition of a father or mother is often worth as much as the education and experience a doctor has, and we should not be afraid to assert ourselves on behalf of our children.

About a year ago my oldest (previously non-allergic) daughter was on Augmentin for pneumonia and developed hives. The doctor at the emergency room told me to give her Benadryl and finish off the last 4 days of the prescription. I was a little shocked at this advice, but I thought for a moment and then said, "I guess as long as I have her sister's Epipen right next to me, I could give her another dose of this." The doctor left the room for a moment to consult with another pediatrician, and returned with a prescription for a different antibiotic.

This doctor's clinical knowledge initially interfered with her ability to make a reasonable decision in this situation. She had learned in medical school and in practice that children sometimes develop hives when they have a virus, influenza, or other types of illnesses. Most likely, my daughter's hives were caused by influenza, which is also what made her susceptible to bacterial pneumonia and led to her treatment with antibiotics in the first place. However, on the outside chance that the hives were from the Augmentin, any doctor worth his salt would change the prescription. Her attitude reminded me of the saying, "Shoot first, ask questions later." My preference, which was honored, is to avoid anything that might be causing the hives and later have an oral challenge.

Since we haven't done the challenge yet, I don't know if my daughter is really allergic to amoxicillan or not. But I am grateful that when I persisted, the doctor listened to my concern and gave my daughter a new prescription. Changing antibiotics certainly didn't hurt her, and continuing Augmentin could have been disastrous. When dealing with doctors, remember that they are people and they make mistakes too--if you feel uncomfortable, push until you get the answers you need. No one is completely infallible!

Peanuts first...eggs next...then what?

2010-05-22T18:28:00.000-07:00

Reading another allergy mom's post about her child's recent allergic reaction has sent me on a trip down memory lane. Sophie has been blessed to have had no serious reactions for the past 2 years. In fact, her last one was in the allergist's office when we did her peanut challenge in 2008.

Sophie was 6. Her recent tests showed a decline in the peanut and egg antibodies, and our allergist asked her about doing a couple of challenges. Initially, she declined. You may think this is funny, that she was calling the shots, but it is her body and she is the one who suffers if she can't eat what other people eat, so I am inclined to weigh her opinion heavily on these matters. He talked a little more (I had already said it was up to Sophie) and convinced her to try a peanut challenge. She stated that she would only be willing to do the egg challenge if she passed the peanut challenge.

We used peanut butter for the challenge. With the first few doses, she had no problems. No itchiness, no redness, no gasping. After we'd been there about an hour, she got a bigger dose--2 teaspoons if I remember correctly. She was okay for about 10 minutes after she ate it, and then she exploded. Well, not literally, but almost; she projectile vomited a couple of times in a row and then began a rapid-fire sneezing routine. I remember so clearly holding a trash can in one hand and a handful of tissues in the other, doing my best to help Sophie, while the doctor was scrambling around and said to me, "Well, this is 2 body systems, respiratory and digestive. That's anaphylaxis." We both looked at the Epipen sitting on the counter.

Sophie stopped vomiting for a minute, long enough to take some Benadryl. The Epipen stayed put. When she vomited up the Benadryl, the doctor fingered the Epipen and commented aloud that Sophie hadn't sneezed for a couple of minutes. Sophie's body began to calm down--maybe some of that Benadryl stayed in her long enough to do some good, or maybe she was the recipient of a miracle (well, I know that to be true either way), but she stopped vomiting and sneezing. Within an hour, she had taken both Zyrtec and prednisone without vomiting and we were able to go home.

That was 2 years ago, and yesterday Sophie told me that she has no intention of having an egg challenge, since she hasn't passed peanuts yet.

Pregnancy and Allergies

2010-05-21T12:03:00.000-07:00

An email from a reader got me thinking today about when I was pregnant after having one child with food allergies. I was worried about the new baby developing food allergies like Sophie's. But I was terrified that she would have allergies that Sophie didn't have--and make our list even longer! I talked with our allergist and he gave me some recommendations based on the current research. Nothing is guaranteed, but it worked out for me--Maggie doesn't have any allergies at all. What are your thoughts on pregnancy and food allergies? Did you have a specific plan to avoid allergies? Did it work?

You've come a long way, Baby!

2010-04-03T20:44:00.000-07:00

For me, a huge piece of managing food allergies has been about managing anxiety. If I had the food allergies, my anxiety level would have been much lower; I am me, and I can trust myself to not eat something if I don't know what's in it. This is simply not the case with kids; when Sophie was really small I wasn't sure if she understood her allergies well enough to protect her if I wasn't around for some reason. Now that she's older, well, I still wonder about that.

When Sophie was first diagnosed, my food allergy anxiety (shall we just call it FAA for short?) was all based on three possible enemies:
1. Sophie
2. Other People
3. Me.
My FAA that Sophie would accidentally feed herself something that would hurt her led me to do a few really drastic things. When she was crawling, I swept or vacuumed the floor at least 12 times every day. I remember at one point my husband called from work at about 10:00am. When he asked me how I was doing I started crying and said, "I've already swept the kitchen floor 6 times!" During those early years, we completely eliminated a number of foods from our home, such as peanut butter, crackers, and most breads. As she's grown older (she is now 8 years old) some of these foods have made their way back into our lives, with no detrimental effects. We've come a long way, Baby!

I found the Epi-Pen to be my greatest ally in resolving my FAA that Other People (grandparents, siblings, friends, aunts, uncles, etc.) would feed Sophie something harmful. Whenever I absolutely had to leave Sophie with someone other than my dear husband, I taught the babysitter how to use the Epi-Pen. After doing this a few times, I realized that people were terrified of it! Teaching someone to use the Epi-Pen practically ensured that they would take no risks, since they didn't want to have to use it! Pretty soon, I started showing it to anyone who was even around Sophie, because something about needles really brings home the severity of food allergies.

Alas, I was most anxious about myself. With all of the terms to learn and information to assimilate in a critically brief period of time, how could I be sure that I wouldn't miss some ingredient on a label? Indeed, I did miss ingredients a few times--only to catch my error seconds before Sophie ingested the offending food. In one instance, I didn't catch it in time, and poor Sophie paid the price in vomiting. But it's been a long time--maybe even years--since I have made such an error. And as I have been more accurate, my FAA has decreased. I no longer wake up in a cold sweat from the nightmare in which I have temporarily forgotten Sophie's allergy to eggs and witnessed her poor body swollen and sick. I have a new nightmare: Sophie is now reading her own labels. She still lets me double-check her work, but for how long? When the time comes, will I be prepared to hand over the responsibility of keeping her safe? Will I be able to trust my precious child with her own safety? Will I be able to say, Sophie, you've come a long way, Baby!"

I'm no doctor, but...

2010-03-20T14:19:00.000-07:00

I'm not a doctor, but let's just say that I've learned a thing or two about allergies over the years. The things I have learned lead me to believe that allergies are essentially a massive immune system malfunction. Allergic response occurs when the body determines that a usually benign substance (like milk) is hazardous. The immune system builds up antibodies to the benign substance, and on the next exposure, the body responds. Whether the response is minor (a few hives) or dramatic (anaphylaxis) isn't relevant for the purposes of this discussion, the point is that the immune system (which is supposed to fight infections) is waging the wrong war.

So if allergies are essentially an auto-immune system disorder, how do they relate to other auto-immune disorders? Are people with allergies more likely to develop things like rheumatoid arthritis, Graves' disease, PANDAS, etc.? If so, how much more likely? Is it likely enough that people with allergies ought to be educated about other auto-immune disorders so that symptoms will be noticed and early diagnosis is more probable?

It's commonly believed that asthma, eczema and allergies are genetically linked, meaning that if the parents each have at least one of those conditions, then the children are likely to also have at least one of those conditions. Furthermore, children won't necessarily have the same condition as the parents. Does this mean that anyone with asthma or eczema is also more like to develop other auto-immune disorders?

And think about this: aren't most people allergic to something these days? So if most people have an allergy of some kind, does that mean that most of us are walking around waiting for the next auto-immune disaster to strike?

If the majority of people have an increased susceptibility to auto-immune disorders, then that's the new normal. Or maybe this is how we've always been. Maybe humans were never meant to eat such a wide variety of foods, travel to such a wide variety of places, and be exposed to so many potential allergens over a lifetime. Maybe we haven't yet adapted to our new mobility. But maybe we still can.

Granola

2010-02-25T18:13:00.000-08:00

I have had a couple of requests for a granola recipe. I have used this one for ages. The original idea for it came from a cookbook by Kathleen Daelemans called Cooking Thin with Chef Kathleen, but I have made a few of my own modifications.

10 cups oats or 8 cups oats and 2 cups puffed cereals (such as rice or corn)
1 tablespoon cinnamon
1 1/2 cups brown sugar
1/2 cup water
1 teaspoon salt
1 teaspoon vanilla

Preheat the oven to about 325.

Place 10 cups of cereal (oats or a mixture of oats and puffed cereal) in a very large bowl. Add the cinnamon and stir to combine well.

Put the brown sugar and water in a bowl and cook in the microwave for 5 minutes, or until it gains a syrupy texture. You will want a bowl that holds several cups of liquid since the mixture will bubble up while cooking.

As soon as the syrup is finished cooking, add the vanilla and salt and stir until the salt dissolves. When as much salt as possible has dissolved, pour the syrup over the oat mixture. Do not scrape out the syrup bowl--it is likely that a little salt will cling to the edges and it won't taste so great in your granola!

Stir the syrup into the oats mixture. When it is well combined, spread it onto 2 large, greased baking sheets (or baking sheets that are lined with a Silpat or parchment paper) and pop them in the oven. Bake for a total of 40 to 50 minutes, until you can just barely see the oats beginning to brown. Allow the granola to cool and then store it in airtight containers. I imagine you could probably store it for a couple of weeks at room temperature, although with 4 kids, this granola has never lasted much more than a day at my house.

If you like to have dried fruit in your granola, I suggest adding it after baking (otherwise the fruit will scorch). There are lots of great possible variations. A couple that my family likes include:
Add 1 tsp. powdered ginger with the oats and mix with 1+ cup dried cranberries after baking.
Add a mixture of raisins and dates after baking.

Other things you could try would be to add coconut or sunflower seeds to the oat mixture--remember keep your total at 10 cups--and/or try other spices and dried fruits.

Life is about...

2010-02-08T12:00:00.000-08:00

Sometimes I feel like life might just be about driving the kids to the places they need to go. Most days I suspect that life is really about figuring out what to cook for dinner next. Ever since I started working on the Sophie Safe Food Guide, I thought that life should be about working on that. Whenever something new comes up with my health or my kids' health, I'm certain that life is really about managing health--allergies, endocrine system, strep throat, sinus infections, asthma, etc. But in the end I always realize that life is about balance.

I struggle to balance the needs of our 6 person household with my desire to have a successful business. Most days this struggle results in one of two things: either I work on the couch using my laptop while there are children snuggled in as close as they can get with me still being able to type, or I work late into the night, past the kids' bedtime, and mine as well.

I wrestle with managing the day to day requirements of the house while keeping up with my business goals: every day at 5:00 I feel panic surge through me as I realize that I must, once again, make dinner.

I wonder if I'm doing the right thing when I give Sophie an extra treat because she couldn't have what everyone else had at a party or event. Is it enough? Is there a better way to compensate for what she misses? Is it unfair to the other children?

And at school, with friends, at church, I debate about taking care of Sophie's allergies completely by myself, or asking others to make accommodations. I feel the constant need to balance her (and my) need for acceptance and friendship with the desire not to burden others. Do I ask her to "just make do" too often? Have my requests for others to adjust been too demanding? When it's an issue of safety, the question is easy--I won't put my child in danger for anyone's convenience. But often it's an issue of desire, not safety. Yet how often can a child's simple wants be denied before there is emotional damage?

I hope that I am balancing things in a way that will teach my children that through prioritization, they can accomplish great things. I hope that I am managing Sophie's allergies in a way that will help her understand how to accommodate others and be compassionate. I know that she feels the compassion of others as our friends frequently pack her a special little bag of treats for Halloween, or go to multiple stores to find cookies that she can have, or offer to make something Sophie Safe for the class Christmas party, or keep their pantries stocked with a handful of Sophie-Safe snacks for when she comes to play. I hope I can teach her to focus on the blessings of love and kindness that have come into her life because of her food allergies. I hope I can set that example.

Grief

2010-01-30T15:23:00.000-08:00

Today after playing with her cousins, Sophie cried in the car because while she was there they made non-safe brownies, and everyone had some--except, of course, Sophie! Over the past few weeks, she has angrily asked, "Why do I have to have food allergies, anyway?" She will mournfully say, "I wish I could have some of that." Her feelings regarding food have clearly shifted from reluctant acceptance to sadness and anger, even grief.

After nearly 8 years of living with food allergies, is she just now grieving her loss? Does it take a child 8 years to realize the mark of food allergies? To see the separation and limitations caused by this, dare I say, disability?

And is it possible that everything I've done for her is not enough? The research, experimentation, recipes...doctor's visits, eliminating pets, foods? Is it truly possible that my years of depression about food were not enough to save Sophie from her own grief?

Sophie Safe Food Guide

2010-01-23T10:42:00.000-08:00

In the early days of our journey with food allergies, I would wait until late in the evening to go grocery shopping. My husband stayed home with the kids and I went alone, standing for hours in a single aisle in the grocery store, reading label after label after label. When I was emotionally exhausted, I would take my meager findings to the checkout and pay, bring no more than a bag or two home. After a few weeks passed, having rested and regrouped, I would set out again to seek battle with the grocery store.

Many times in those days I wished that someone had built a database, a website where I could research ingredients in the comfort of my own home, at my own leisure, and be prepared when I went to the grocery store. And now we have built one--Sophie Safe Food Guide is now available for anyone to register and find foods that work for them. When you create an account with the Sophie Safe Food Guide, you can set up profiles detailing the dietary needs of members of your household. You choose the items that each person need to exclude from their diet, and when you search, the database will return items that are free from the things you're avoiding. For example, if you are allergic to tree nuts, salmon, and you don't want to eat things with saccharin in them, then the database will give you lists of items with no nuts, no salmon, and no saccharin.

Our Basic account includes 1 profile with unlimited allergens. Don't forget to check out the grocery list--mark the things you want to purchase and print out your list for the next grocery shopping trip. Check it out at www.sophiesafefoodguide.com.

Slow Cooking = Easy Cooking

2009-10-06T12:23:00.000-07:00

I received an email today from Christina, author of www.ourducksinarow.com, asking about slow cooker recipes. She has used the pork roast recipe from Sophie Safe Cooking multiple times and asked what other things she can cook in her slow cooker. Here is a basic slow cooker meal recipe that can be modified for what you have and what you like to eat.

Slow Cooker Casserole

1 1/2 C uncooked rice
OR
3 C starchy vegetables (potatoes, carrots, etc.)
2-3 pounds of meat (use a roast, a whole chicken, several chicken breasts, or pork chops, etc.)
seasonings that you like (use 1-2 teaspoons of a seasoning blend, or see below for suggestions)
1 C water if using starchy vegetables
OR
3 C water if using rice

Put your rice or starchy veggies on the bottom, put the meat on top. Pour in your water and then sprinkle the seasonings all over the meat and down into the starchy vegetables. Cook on low for 8 hours or high for 4 hours (always cook on low if you have a tougher cut of meat--the low temperature over time will make for a much more tender meal).

If you prefer, you can cook just your meat in the slow cooker. It will not require any liquid in most cases. With chicken, you will want to reduce the cooking time and keep an eye on things to make sure it doesn't burn or dry out. The seasoning suggestions will work for meat alone or meat with a starch. For example, today I am cooking a beef roast in the slow cooker with garlic powder, salt and pepper. We will be eating it with some veggies and mashed potatoes that I will cook separately just before dinner time.

Seasoning Suggestions:

Onions or Garlic: Most people like to add onions or garlic or both to almost any dinner recipe. My family prefers garlic, so we usually add a couple of cloves of fresh garlic, or 1/2 to 1 tsp. of granulated garlic to a meal like this. If you're adding onions, I would try about 1/2 onion, diced finely, to start. You can experiment and find the right amount for you and your family as you go along.

Salt: 1 tsp. of salt is usually plenty for this amount of food. You can use less depending on your other seasonings, or none if you are using a seasoning mix, especially if it contains salt.

Pepper: 1/4 to 1/2 tsp. of black pepper, and/or use chili powder or red pepper flakes or cayenne pepper.

Italian Style Seasoning: use a mix of oregano, basil, and parsley with garlic and onions, or just use the spices out of this list that you have already on hand.

Mexican Style Seasoning: 1 Tbsp. chili powder, 1 tsp. cumin, 1/2 tsp. garlic, 1 tsp. Mexican oregano; you can also add a small can of chopped jalapeno peppers or green chilies. With green chilies, I sometimes omit or decrease the chili powder.

Seasoning for Pork: For pork I love to use a combination of garlic (1/2 tsp.), sage (1/2 to 1 tsp.), sea salt (1/2 to 1 tsp.) and fresh ground black pepper (1/2 tsp.). Replacing part of the water with apple juice or apple cider is also a great touch.

Seasoning for Beef: One of the many options for beef is barbecue style. To achieve this, add a can of tomato sauce to your meal. Season it with 1/2 tsp. ground mustard, 2 Tbsp. brown sugar, 1/2 to 1 tsp. salt, 1/4 to 1/2 tsp. cayenne pepper, 1 Tbsp. cider vinegar, and your garlic or onions or both.

Seasoning for Chicken: Chicken is so versatile--there are a million ways to season it. Some of the things I love with chicken are 1/2 C diced celery or 1 tsp. celery salt, a bay leaf, oregano and parsley.

For this kind of cooking, you should go with your nose--if it smells like it would go well in your dish, then it probably will. You can also reference other recipes that you like and use the spices they recommend. Good luck, and happy cooking!

What, more candy?

2009-10-01T12:26:00.000-07:00

What to do with Halloween candy is a dilemma for every parent, and even more so for those of us managing our children's allergies. On average, Americans eat about 23 pounds of candy per year, and much of that is consumed in the weeks leading up to and including Halloween. Each year as the holidays draw near, I have two major food questions on my mind:

1. How can I help my kids to continue to make good eating choices during this time of year?
2. What can I do to help Sophie feel happy and create positive memories despite her dietary restrictions?

Over the years, I have developed a few ideas for managing Halloween candy, and friends have contributed others.

First, since Sophie loves to Trick or Treat, when I purchase Halloween candy to pass out at our door, I generally buy only items that are safe for her. I also set aside some of the safe candy so that when she gets home from Trick or Treating, or from a party or other event, she can give me her forbidden items in exchange for things that she loves and that are safe for her.

Second, I have several friends who pay their children for their Halloween candy. They have a set amount of time during which the kids can eat what they want (maybe 1 or 2 days), and then they buy the rest of the candy. They set a price either per piece or per pound, and it gives the kids a way to earn some money, and Mom and Dad don't have to worry so much about cavities.

Purchasing the candy generally only works for kids old enough to understand and appreciate money, so my third suggestion is an alternative to the candy sale for younger children. For younger kids, or kids who don't care about the value of a $dollar$, purchase a toy that you know your child really wants. You can spend whatever works for your budget. Then, offer to trade your child that toy for their Halloween candy. For many kids, the concrete toy is much harder to resist than the more nebulous dollars and cents.

The fourth idea is simply another version of the third. Rather than offering to trade, explain to your children about the Halloween Fairy. The Halloween Fairy is friends with the Tooth Fairy, as well as the less-well-known Bottle Fairy and Diaper Fairy (courtesy of SuperNanny). They operate in much the same way. All of the fairies come at night. They require a certain offering, in this case, Halloween candy, and in exchange will leave something of value, in this case, a new toy.

Whether you trade your kids for their candy or let them keep it and slowly consume it over the coming weeks and months, you can also find ways to control the eating a little. In our family, we ask each of the children to go through their candy and donate supplies to the Decorating Bag. This is a large ziptop bag used when we make and decorate cookies, Gingerbread houses, dipped candy canes, etc. For the sake of simplicity, I require that all donations to the Decorating Bag are Sophie Safe.

My husband has a suggestion as well: Daddy Tax. Daddy Tax is the tax, paid in candy, which all children must pay their fathers any time the children eat candy in front of them. I'm not sure that his motive is reducing their sugar intake, but it does the job just the same.

I hope you all have a safe and Happy Halloween!

Food Allergies are a Blessing?!

2009-08-29T21:22:00.000-07:00

People often talk about how hard it is to manage food allergies, especially with a list like Sophie's. And it is terribly difficult. When managing food allergies, there are all kinds of steps added to your meal preparation that you wouldn't normally take. For example, reading every label, calling the restaurant or caterer before the meal, being prepared with snacks and treats in case there's nothing that will work or the one safe food gets cross-contaminated. If you didn't have food allergies, would you even know what cross-contamination is? I wouldn't!

And yet, with all of that, managing food allergies is such a simple task compared with so many others. Children with food allergies have literally every physical and educational opportunity that everyone has, unlike children with Downs' Syndrome. Children with food allergies know how to prevent an attack, unlike children with epilepsy. Adults with food allergies typically recover completely after an attack, unlike adults with Multiple Sclerosis. And so, I submit that when compared with other lifelong illnesses, food allergies are indeed a blessing.

Life with Costco

2009-03-22T07:12:00.000-07:00

You know, I never went to a Costco or Sam's Club for the first 20 or so years of my life. I don't even know if they were around before then, actually. And here I am, a certified Costco addict. Yesterday I took the girls to Costco because Sophie wanted to eat lunch there and I wanted to fill up my storage room a little more with canned goods. This was my second Costco trip in less than a week, and I managed to spend nearly $300, even though I spent just shy of $200 on Monday!

Since it was Saturday, the taster tables were out in full force, and we discovered something wonderful--rice crackers that are certified gluten-free. And because there was a taster table for them, I already know Sophie likes them and will eat them! We are all so excited to add Crunchmaster Rice Crackers (http://www.crunchmaster.com/) to our tiny list of pre-made foods for Sophie. This almost makes up for last week's let down when a safe cookie I purchased made Sophie's tongue itch. The ingredient list was safe, but it did have an equipment warning. Sophie and I talked it over and decided to try them despite the warning on the label. Risky, I know, but the possible gain seems worth it--this was a relatively inexpensive cookie and could go with her to school for eating when her classmates bring in birthday treats and things like that.

A few years ago, when Costco started to carry soy milk, and more recently when they added Rice Dream to their product list, I moved from being a less-than-once-a-month shopper to a Costco diehard. But now, I've taken the Executive membership plunge. Hmmm...what's 2% back on a box of Crunchmaster Rice Crackers?

Books, Books, Books

2009-03-20T08:43:00.000-07:00

I've had an exciting couple of weeks--my books are now being carried in several local bookstores. On Wednesday of last week, I delivered books to the Borders at Flatirons in Broomfield, CO. Today I received an email from the Tattered Cover, and they ordered books for each of their 3 locations in metro Denver. AND, Borders has scheduled me to do a book signing on May 2 from 1 to 3!

In other news, I discovered a program that has the capability to calculate nutritional information for recipes. I spent several weeks entering all of my recipes into the program, and have now added a nutritional information page to my website, with the information from all of the recipes in Sophie-Safe Cooking.

Traditions of Christmas

2008-12-11T10:15:00.000-08:00

One of our family traditions is to bake and bake and bake and make candy and bake, and then give all of these yummy goodies to our friends and neighbors in the week or two before Christmas. Some of the things we bake invariably get consumed at home (unfortunately too many by me!) and some are taken to holiday parties and so on. With all of the baking going on, I started thinking, wouldn't it be great if there was an allergy-safe icebox cookie dough recipe? Icebox cookies are those cookie doughs that you make one dough and then use it in different ways to make different kinds of cookies out of it.

So here goes...

Allergy Safe Icebox Cookie Dough
3/4 cup granulated sugar
1/2 shortening (I used Spectrum Organic All Vegetable Shortening, made from palm oil)
2 cups oat flour
1/2 tsp. vanilla
1/2 tsp. baking soda
1/4 tsp. salt
up to 3 tbsp. rice milk

Using a mixer, mix the shortening and sugar, adding vanilla partway through. When these are thoroughly mixed, add the oat flour, baking soda, and salt and mix well. The mixture will be relatively crumbly at this point. Preferably with the mixer running, add the rice milk a little at a time, mixing for at least 15 seconds between additions (other wise you won't be able to tell when you've got the right amount of rice milk in the dough). When the dough forms a ball, it is ready to roll out for baking. If you are going to be refrigerating your dough before using it, you may want to add a little more rice milk since food often loses moisture in the refrigerator.

At this point, there are several directions you can go.

Cookie Cutouts
Roll out the dough, half a recipe at a time, on a floured, non-stick surface. Cut it with cookie cutters. You can add sprinkles before baking, or you can bake and cool the cookies and decorate with frosting and sprinkles. Bake at 375 for 7-8 minutes. (Cookies baked a little longer will be more crispy, and those baked for less time will be more chewy.) For great frosting recipes, check out my book, Sophie Safe Cooking (sophiesafecooking.com).

Pinwheel Cookies
Working with half a recipe at a time, roll Icebox Cookie Dough out to form a square, probably about 6 to 8 inches across. The dough should be between 1/8 and 1/4 inch thick. Spread a filling over the dough, staying about 1/2 inch from one edge. Roll up the cookie dough and filling, starting with the side opposite the edge with no filling.

If the cookie dough is hard to roll up, there are a couple of things you can try. First, roll on a floured surface. If you don't have to work to get the dough off of your rolling surface, that will simplify things a lot. Second, place a sheet of waxed paper or something else that's flexible (such as a Silpat) on your rolling surface. You can still flour it, and then you can also use the waxed paper to help you roll up the cookie dough. Lift and push the waxed paper, separating the cookie dough from the paper and rolling as you go. The other thing to consider is that if the dough is too dry, it will crack as you roll it (that's what happened the first time I tried it!). If this is the case, make a note that you need more rice milk next time, and add extra milk to the dough that you still have in reserve.

After you have rolled up you cookies, refrigerate the dough until it is firm enough to handle with ease (1-2 hours). If you refrigerate the dough overnight, or if it seems too hard after refrigerating, allow it to sit at room temperature for a little while before you slice and bake it. Using a very sharp knife, slice the dough into 1/4 to 1/2 inch thick slices. Place them on a cookie sheet, 2 inches apart, and bake at 350 for 8 minutes.

Pinwheel Cookie Fillings
There are lots of different fillings you can try, and I'm sure you'll come up with your own ideas, too. Here are a couple that I think are great!
Chocolate: melt about 1/4 cup chocolate chips. Allow them to cool slightly, and then spread them on the rolled dough. After refrigerating, slice and bake as directed. If you like your cookies hot, beware of both the temperature and messiness of the chocolate filling!
Cinnamon Sugar: shake cinnamon sugar all over rolled cookie dough, refrigerate, slice and bake as directed.
Cranberry: Mix 1/2 cup finely chopped cranberries, 3 tbsp. sugar, and 2 tsp. orange zest and spread over the rolled dough. Refrigerate, slice, and bake as directed.

Chocolate Cookie Cutouts:
When mixing up your dough, you can make chocolate cookies if you like. Instead of using 2 cups of oat flour, use 1 3/4 cups oat flour and 1/4 cup cocoa powder. You can still use all of the same variations. Delicious!

Giving Thanks

2008-12-04T22:58:00.000-08:00

I suppose Thanksgiving has put me in a thoughtful mood, or perhaps it's the fact that I'm trying to figure out what to buy for my already terribly spoiled children, but I've been pondering gratitude. I have much to be grateful for in my life. Many of the things I'm grateful for would be on other people's lists as well--but I have a few extras.

1. I am thankful that I can run. And walk. And see. And play with my kids. You see, a little more than 5 years ago, I was diagnosed with a brain tumor. It was putting pressure on my optic nerve, causing loss of peripheral vision. Because of the placement, I had a craniotomy. Because my neurosurgeon couldn't remove the tumor without risking damage to my optic nerve and other surrounding things, I had 5 weeks of radiation about 2 months after the surgery. And now, 5 years later, I can still see, walk, play with my kids, and I run on a regular basis, which is something I had never done.

2. I am thankful for Sophie's food allergies. The things that are hardest for us are often also the things that make us grow the most. Because of Sophie's food allergies, I have developed skills that I never would have otherwise--such as creating recipes. I have also accomplished things I never would have thought of before--such as publishing Sophie Safe Cooking.

I am also grateful for the usual suspects: my family, my home, God, my husband's job, etc. But I find that I am the most grateful for the things that have been the hardest.

November

2008-11-01T21:30:00.000-07:00

With Halloween behind us (and I hope it was enjoyable and safe for everyone!) it is now November and time to start thinking about Thanksgiving! Yes, Thanksgiving is all the way at the end of the month, but it may take a little time to put together a Thanksgiving meal that is allergy-friendly but maintains many of the traditional elements associated with Thanksgiving dinner. With that in mind, I am working on pie crust recipes. I have one that I have tried a few times, and I would be happy to get a little input from others. So, for your eating pleasure, here is the rough draft of my pie crust:

Pie Crust
1/4 C shortening or margarine
1/2 C sugar
2 C oat flour
1/4 C rice milk

Use a pastry blender to blend the shortening and sugar until it looks like crumbs. Add oat flour and mix well. Finally add rice milk and mix until the dough sticks together in a ball. The consistency of the dough should be similar to sugar cookie dough.

Place the ball of dough on a surface dusted with oat flour. Roll it into a circle approximately 12 inches in diameter. Gently lift the crust into the pie pan. Trim edges. If you need to precook your pie crust, bake it for 12 to 15 minutes in a 350 oven.

I made this recipe this evening and I filled it with cherries mixed with sugar and cornstarch (6 cups cherries, 1 1/2 cups sugar, 1/4 cup cornstarch). Since the filling was rather wet, but the pie needed to cook with the filling in it, I only pre-cooked the crust for about 7 minutes. Immediately after removing the crust from the oven, I filled it with the cherry mixture and popped it back in for about an hour, until the filling was bubbly in the center. It turned out pretty well.

The other little tip that might be helpful is that when you roll your dough out, it is easiest if you roll it onto a flexible, movable surface, such as a Silpat or some plastic wrap. That way, when you've got it the size you want, you can more easily move the dough into the pie plate. Another option is to roll it on a hard surface (dusted with oat flour, of course) and when you're all done, place a piece of plastic wrap over the dough. Then pick up the edge of the dough (and plastic wrap) and roll it onto your rolling pin so that the plastic wrap is toward the rolling pin. Then you can simply unroll your dough onto the pie plate.

Enjoy!!

Candy without labels??

2008-10-28T08:38:00.000-07:00

Halloween. The beginning of the holiday season. And the beginning of the allergy worries about the holidays. I love the holidays, and I really want Sophie to love them, too. I don't want her to miss any of the fun, the magic, the tastes, the experiences. So I have come up with a few things that help us to make Halloween work for her.

School parties: I always attend Sophie's school party. I always bring something to share with the class, and I often sign up to help plan as many of the school parties as possible. This can be a lot of extra work, but it also makes the food aspect of the party so much more comfortable for us.

Parties with friends: If Sophie is invited to another Halloween party (or birthday party, for that matter), I simply ask what will be served in terms of food and bring a suitable substitute for her. Many other parents now ask me to just tell them the right brand of hot dogs, the right kind of ice cream, etc. so that they can provide Sophie with what she needs. We have been very blessed to have such supportive friends! I always make sure to have some extra candy or other treats at home so that if goody bags contain things we're not sure about, she can trade for something we know is safe.

Trick or Treating: Isn't this such a nightmare? The traditional after trick-or-treating candy sort takes on new importance with food allergies in the house! I try not to make Sophie's candy sort too different from the other kids. Either Jeff or I sit with all of them as they go through their candy. For the most part, she knows what she can and can't have, and her sisters often trade for some of her forbidden items. I also have a reserve of Sophie-Safe treats to trade as well. The sad part comes when there's something that we're not sure about and she wants to eat it. I think all candy manufacturers should put their labels online, so that we can sit there Halloween night and Google all the candy that isn't familiar to us. Who ever thought about the ingredient labels before life with allergies?

Success at the Happiest Place on Earth

2008-10-13T20:12:00.000-07:00

Well, for us it really was the happiest place, because the staff was fabulous about handling food allergies. All of Sophie's allergies are within the "top 8," and I think that made it easier on the staff. They were amazing. One place we ate at was a buffet and I asked about some buffet items. They told me what would work for her and then brought her plate out already made up so that I wouldn't need to worry about whether there was any cross-contamination with the serving utensils! The Chef came out to talk to me right away at every restaurant except one; at that one it was the manager instead. I am very impressed, to say the least.

As a side note, I had an interesting allergy experience at Disneyland. One of my other children ended up in the First Aid center because of a migraine headache, and I stayed with her while she was resting. While we were there, another mom and daughter came in. The little girl was having stomach problems--cramping, etc. She was able to get comfortable and fall asleep for a few minutes at one point, during which her mother and I started talking. It turned out that the little girl had food allergies. A little while later, the girl went to the bathroom. It was clear that her stomach problems were becoming more intense. When she finally came out, probably 15 or 20 minutes later, she was also sneezing repeatedly. This was a new symptom and struck me as being a little odd, until I thought of Sophie's recent peanut challenge.

During her peanut challenge a few months ago, Sophie ingested some peanut butter without problems, but eventually threw up and then sneezed repeatedly for several minutes. This was followed by more vomiting. At the time, I was very worried because whenever 2 body systems are reacting, you have to consider the possibility of anaphylaxis.

Well, the little girl's mom was worried about getting her daughter back to the hotel because she wasn't improving and needed better rest, and didn't really notice that her daughter had started sneezing. I mentioned that she might want to give her a Benadryl and have the RN take her blood pressure, just to check, and within a few minutes she ended up being rushed off with the paramedics to the emergency room. As far as I could see, she was not in any terrible danger at that time, but there were 2 body systems reacting--and you just never know where that's going to go.

Hopefully everything went well from that point--I haven't heard anything further. As I've considered the evening, it has struck me how interesting it is that I happened to be there with another allergy mom. If nothing else, we were able to give each other a little support in an unfamiliar environment. Right place, right time!

Disneyland?!?

2008-10-08T08:02:00.000-07:00

Is this crazy? We're taking our family to Disneyland. So in addition to long lines, crowds, trying to keep track of a wandering 3 year old, not to mention the possible nightmare of airplane travel with children, we are braving a vacation with food allergies. What does Disneyland have to offer a child who's allergic to eggs, wheat, peanuts and tree nuts? I've made a few phone calls, even received a phone call back from one of the head chefs, so now it's trial by fire so to speak. Our first Disneyland food experience will be bright and early our first day there, at the PCH Grill (the Lilo and Stitch breakfast).

It's too late to be nervous, so wish us luck!

Lunchbox Lunches

2008-09-25T09:31:00.000-07:00

One of the things that caused me stress when thinking about sending Sophie off to school was what to send in her lunch. At home, she usually eats leftovers from dinner the night before, or we cook something fast for her lunch. I knew that sandwiches would be okay sometimes, but rice bread is too expensive for her to take every day. Plus, I wanted her to be able to pack her own lunch. As it turns out, she takes muffins for her lunch most days. They don't have to be refrigerated and I can actually make a batch and freeze it, so I'm not baking constantly. If she puts 1 or 2 frozen muffins in her lunchbox the night before, they are thawed by lunchtime.

Do you need extra muffin recipes? In addition to using the muffin recipes from my cookbook, I also make the quick bread recipes into muffins--mix up the batter and pour it into greased or lined muffin cups. A recipe for 1 loaf of bread makes between 12 and 18 muffins, depending on the size of your muffin cups and how full you fill them. Then bake at 350 for 20-25 minutes. When they are done, the tops should be starting to brown and a toothpick or knife inserted into a muffin should come out clean. I like to allow the muffins to cool for about 5 minutes in the muffin pan and then slide a knife down the side to lift the muffins out one by one. If you're storing them, especially freezing them, you'll want to let them cool completely before putting them in a ziploc bag. If you're not storing them, they taste best warm from the oven, in my opinion!

There is one drawback--Sophie's older sisters now take muffins in their lunches, too, and we are going through more muffins than you can imagine!

Some of the other things Sophie has taken in her lunchbox are: celery sticks or apple slices with Sunbutter (sunbutter.com and sold at Target in our area!), chips with bean dip or chicken salad, and of course sandwiches Sophie Safe Style--rice bread with SoyNutButter or Sunbutter and jelly.

I'm so proud!

2008-09-24T20:50:00.000-07:00

This is Sophie's first year eating lunch at school, as well as her first year having a snack everyday at school. This created all sorts of nervousness for me before school started, but I shouldn't have worried. Yesterday Sophie told me that a few weeks ago, her teacher accidentally gave her Goldfish at snack time.
Feeling incredulous, I asked, "What did you do?"
She said, "I said 'I can't eat those,' and she cleaned off my desk." She said it as matter-of-fact as if she was telling me her spelling words.
Knowing that food plays a central and volatile role in Sophie's life, I am so proud that she is so relaxed about it!

Byproducts

2008-09-22T21:21:00.000-07:00

One of the byproducts of being the mother of a food allergic child is that people send me all kinds of interesting articles, information about new research, etc. My sister-in-law Mandy sent me a link to an article about the woman who writes this blog: allergicgirl.blogspot.com and in reading her blog, I found out about some new things happening with food labeling practices in the United States.

Apparently, there was recently an open FDA hearing about "may contain" statements. The AFAA is trying to find out how people are using "may contain" statements and advise the FDA appropriately. If you would like to add your voice, please participate in this short survey about food labels:

http://www.surveymonkey.com/s.aspx?sm=LT6Y49lRmdLyNqqV_2bFLvuw_3d_3d

It only took me a few minutes, and in addition to enabling me to be heard, I also took the opportunity to examine how I am using those elusive "may contain" statements, and what I really think they mean. Thank goodness for byproducts!