Buttery Mashed Potatoes

There's nothing worse than having food allergies or restrictions on a food holiday, and there's no food holiday quite like Thanksgiving. From mashed potatoes loaded with butter to fancy salads sprinkled with nuts to pumpkin pie with eggs and wheat, who isn't allergic to something in the mix? Here's how we manage the festivities:

1.Whether we host Thanksgiving dinner at our house or join in on someone else's celebration, we always make a handful dishes ourselves, in order to have a measure of control. If Sophie and I make the things that she loves the most, we don't have to worry about whether those items will be safe.

2. We ask lots of questions about the dishes other people bring. Pistachio pudding and lime jello with Cool Whip can have a very similar look, and nuts can be hidden somewhere inside a salad. Honestly, there are so many variations on every recipe, I never trust something without asking.

3. Serve allergies first. We always let Sophie get her food first or as close to first as possible. That way, even if something happens in the serving process, such as serving spoons getting swapped or unsafe food dripping into a safe dish, Sophie has at least had one helping of everything beforehand. Even so, we try to place safe dishes at a distance from unsafe dishes and make sure every bowl has it's own spoon to minimize accidental contamination.

4. Make and enforce rules about consumption of unsafe dishes. Sophie is severely allergic to wheat, eggs and pecans (among other things), so pecan pie is Sophie death, but it's also a staple at many Thanksgiving meals. We haven't eliminated pecan pie, but we do require that it is eaten at the table and hands washed afterwards, no matter what. And we keep it as far away from the safe pies as we can.

What other things have you found helpful in coping with allergies at Thanksgiving?

Thank Goodness!

I'm always so happy when I read little success stories, like this one about Carolyn Mossey, a teacher, and her student Sarah Batchelor. Sarah had no known allergies, but between the 9-1-1 operator and Carolyn, she received an injection from another student's Epipen when she began showing symptoms of anaphylaxis. Great job to all involved, and good luck to Sarah in learning about her new found allergies!

Hooray for Andes!!!

This evening as we were checking out the Christmas displays at Target, I saw a few varieties of Andes candy. I decided to try the Andes Toffee Crunch and noticed on the back of the package that they are made in a facility that does not use peanuts, tree nuts, eggs, or gluten. Hooray for Andes!

5 is more than 4

After 2 hours of tears last night, which started because I forgot to back something up on my computer, and ended up being about my own long term health problems, I have invested some time in self-examination this morning. Why do I have these meltdowns about my health every so often? After all, it's a couple of pills a day, 2 extra doctor appointments every year, a few blood draws and an MRI. I would guess that my total time spent per year in managing my health issues is in the neighborhood of 15 hours or less. That's less than 0.2% of the hours in a year. It doesn't seem like it would be worth tears.

The thing I tend to overlook is that ongoing health problems cause stress in and of themselves. Simply being less healthy is stressful, and every time I have to do something to address my health issues, such as get a blood draw, or call to adjust a medication, my stress level goes up just a little more. If the average Stay at Home Mom has a stress level of 5 (on a scale of 1-10, 10 being the highest), I think even minor ongoing health problems would boost that to a 6. When things are more out of control with her health, you could make it a 7 or higher.

Now think of food allergies. For Sophie, her food allergies almost never require special medication. They are under good control. Her skin is clear and happy. But every time she opens a box of cereal, she reads it first (and I've already read it too). Everything that goes in her mouth is a potential hazard, mitigated by knowledge. And every night, she performs her lotion ritual, designed to keep her skin healthy and smooth, designed to keep eczema at bay. Between daily tasks and doctor appointments, Sophie's allergies require at least 100 hours per year, more than 6 times what my health problems require. When we were still learning to manage them, they required significantly more time. So if my stress levels are 1 notch above the average mom, then Sophie's are probably 2 notches higher than the average kid. And every dinner out, every birthday party, every holiday ratchets things up a little more.

Food allergies are not easy. They are manageable. They are not the worst possibility. However, they are still time consuming, and exhausting, and frustrating, and for many people, they are life-long. So if you feel like you need a good cry, go ahead. I know I do.

For Kicks and Grins

If you're ready to laugh at people and the goofy things we do, even in the medical realm, and maybe even poke a little fun at food allergies, Hank Campbell's article about Celiac disease is a fun read. Check it out. ;-)

U Know

Has anyone heard about this new test? It is supposed to be able to tell you with greater accuracy how severe your allergy is from a blood test. It looks interesting, although I can't tell from the website if there is much difference between their test and the blood tests we have already had for allergies. And it appears to be only for peanuts, at least for now. Hmmm...

Vigilance

When Sophie was a young child, one day our allergist commented to me, "One of the reasons I love having Sophie as a patient is that I don't have to worry about her when she leaves the office with you. I have other kids that I know are going to end up in the ER several times before our next visit, but not Sophie." He knew that I listened carefully and did my best to be vigilant about her diet.

This comes up over and over again--the topic of vigilance with food allergies. And this article based on a recent study done at National Jewish here in Colorado highlights the point. Doctors followed about 500 infants for 3 years, tracking allergic reaction to food. 11% of the reactions were from non-acccidental exposures--in other words, the child's caregiver purposely gave them a food they knew could cause a reaction. Of the accidental exposures, these are the reasons given:

"...forgetfulness, reduced supervision, not checking a product, etc), 473 (64.9%); label reading error, 115 (15.8%); cross-contamination, 110 (15.1%); error in preparation, 30 (4.1%); and manufacturer labeling error, 1 (0.1%)."

We all make mistakes, and things happen, but it is our job as parents of kids with food allergies, especially when they are babies, to not forget, to read labels, to be hyper-vigilant.What can be done to help parents understand the need to take extra care with their little ones, when they are still learning about food allergies?

So that's how...

This article sets forth another theory for how food allergies could begin, especially in those who present food allergies as older children or adults. The researchers believe there is some evidence that after absorbing certain allergens through the skin, such as wheat or coloring, that an individual could develop an allergy to that food. With such a wide variety of symptoms, onset, etc., it seems unlikely that there is just one cause of food allergies, but maybe this is part of the "how"!

10 Things That Make Me Crazy

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

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!

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!

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?

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?!?

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

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.