2013-02-09

Dear New Food Allergy Parent


If you are reading this post because your child (or anyone else) is having an allergic reaction, get off the computer and get medical treatment RIGHT NOW.  I mean it.  We can talk later.

Since I began writing my blog, every now and then I get an email from a parent whose child has just been diagnosed with food allergies, and is completely overwhelmed by the realization that a normal, everyday food has the potential to kill their child, and that this food is simply everywhere.  Not only is keeping their child physically safe difficult, but navigating social situations and educating family and friends can also be nerve wracking.  On top of that, putting meals on the table that are safe to eat and aren't rejected by picky eaters is difficult, expensive and time consuming.

Believe me, I have been where you are and I feel for you.  I try to answer all emails, but am embarrassed to admit that sometimes my inbox gets the best of me.  So here in one post are my seven best pieces of advice for navigating a new food allergy diagnosis, bearing in mind, of course, that I am the mom of a food allergic kiddo, not a doctor.


1.  Visit a board certified allergist.

Whether your child's first anaphylactic reaction lands you in the emergency room or your pediatrician's office, you should leave with two things:  an EpiPen, a Twinject or the new Auvi-Q, or a prescription for one, and a referral to an allergist.  If a health care provider does not give you instructions on how to use your epinephrine injector, here's a good video from Nationwide Children's Hospital and another one from National Jewish Health on how to use an EpiPen, and here is the demonstration video for the Auvi-Q.

As soon as you find yourself entering the world of food allergies, you will also discover no shortage of "alternative" treatments and practicioners.  Facing a diagnosis of a life threatening condition that has no cure, not to mention navigating the bureaucratic maze of health insurance and medical care, makes us as parents susceptible to their claims.

Part of their standard pitch is that modern medicine doesn't know what is causing all these new cases of food allergies, along with some theory about "energies" that does.  So why shouldn't you at least give it a try?

First, doctors may not know what has caused the alarming rise in food allergies, but they do have a detailed understanding of the mechanism.  I cannot recommend this post, The Science of Anaphylaxis - An Allergic Storm by The Allergist Mom, strongly enough.  If you are not up to reading it now, bookmark it and read it and the follow up post, The Science of Sensitization (or How in the World We Become Allergic), later.

Second, if a hefty dose of science isn't enough to keep you away from the siren song of the charlatans, then I will simply refer you to this case in Ireland, in which the alternative practicioner killed the peanut allergic patient he was trying to cure.

2.  Get support.

You are not alone.  Even if you do not personally know any familes dealing with food allergies, there is a huge, wonderful, supportive online community here to help you.  The discussion forum at Kids with Food Allergies is one of the best places on the web to start finding resources.  If you are on Facebook, Allergy Moms is one of my favorite groups there.

I also suggest joining a local group for recommendations for area doctors, daycare, restaurants, etc.  I usually only see members of my group once a year at the Food Allergy Walk, but the they are always willing to give help on the online board.  The Food Allergy and Anaphylaxis Network (FAAN), which is in the process of becoming Food Allergy Research and Education (FARE), has a useful support group lookup tool.  Author and cookbook writer Linda Coss also maintains an extensive list of support groups on her website.

It is also critical that your partner and any of your child's other caregivers take the child's food allergy seriously and works with you to manage it.  Keeping your child safe is going to be a team effort.

3.  Create a safe space.

Our son was diagnosed with his first food allergy to milk at four months of age.  Since he wasn't yet consuming anything other than breast milk or formula, or even crawling, keeping him out of contact with dairy was easy enough.  As he grew older and his food allergies continued to multiply, what began as a single shelf for his food in the refrigerator expanded until we now only have foods safe for him except for a few dairy products (and my chocolate stash!)

If you are dealing with a single allergen, such as peanut, then making your home an allergen free zone is the most practical way to go, but multiple allergies may require a conversation with your allergist about what's safe to keep in your house and what isn't.  In our case, I won't allow anything containing shellfish or peanuts in through the door due to my son's high IgE levels and his violent reactions to them.  His other allergies are comparatively milder, so we do keep a few cheeses and some coffee creamer in the fridge.  We use good handwashing and send all dishes and sponges through the dishwasher.  Other than the contained dairy itself, though, I won't allow any unsafe food, whether it includes an allergen as an ingredient or simply as a potential cross contaminant, in my kitchen.

For your child's safety and your own peace of mind, make your home a safe place, and do your best to contain the allergen, not your child.

4.  Keep it simple in the kitchen.

When you are first faced with changing the way you prepare meals, do your very best to keep your cooking as simple as possible.

If you only have a couple of safe recipes, go ahead and stick to them for now.  If it means alternating chicken and rice with spaghetti and tomato sauce for dinner for the next month, so be it.  Don't wear yourself out making separate meals for different members of your family, either.  That was something I learned the hard way.  I would work hard to create meals for my son that were safe, healthy and appealing, then scrounge up something far less nourishing for myself.  Your health matters, too, though your taste buds may suffer for a while.  You can start branching out into more complicated recipes once you've gotten your feet under you.

Also keep your diet simple by avoiding as much processed and genetically modified food as you possibly can.  The fewer ingredients a product has, the healthier it will be, and the less it is processed, the fewer opportunities there will be for cross contamination with potential allergens.

There's quite a bit of speculation and controversy about whether the consumption of GM foods is linked to the rise of food allergies.  Whether or not the larger trends are related is unknown, but there is evidence that proteins from an unrelated organism inserted into a food can produce an allergic reaction.  The famous case in the nineties of brazil nut genes inserted into soybeans that caused allergic reactions in individuals allergic to brazil nuts led to biotech companies voluntarily avoiding using genes from the 8 foods that cause 90% of the allergic reactions in this country, or as they are misleadingly referred to in the literature "known allergens".

Unfortunately, protein from any food can cause an allergic reaction, not just the Big 8.  Not only do food companies decline to divulge the sources of the inserted genes in their products, they have strenuously fought attempts to have genetically modified foods labeled as such.  Since the first rule of food allergies is if you don't know what's in it, don't eat it, try to avoid GM foods and eat organic if you can.

5.  Set an example for your child.

Even if you feel like crying and screaming on the inside, handling your child's food allergies calmly and matter of factly is a tremendously reassuring gift to them.  Not only will your child feel safer, but it will set an example for how to safely manage their allergies themselves as they get older.

Show them how to handle the day to day routine.  Always keep your EpiPens with you.  If you forget and leave home without them, simply turn the car around and go back for them, even if it means being late.  Let your child see you reading every single ingredient label when you are shopping or preparing meals at home.  Make a point of bringing safe snacks with you, so your child learns to be prepared and doesn't get caught hungry with nothing safe to eat.

Teach your child how to be assertive by explaining your child's medical needs politely, in simple language and without apologizing.  When I'm at my son's school, I do get tired of feeling like I'm on stage as "the allergy mom" all the time, but the opportunity to educate is absolutely priceless.  I've learned to be grateful that staff, other parents and even my son's friends will ask me questions, rather than making assumptions or getting information from inaccurate sources.

And if you are fed up with being calm and rational and explaining over and over again how your child can have "Absolutely no contact with a food", no "Not just a little bit", "Not ever in the classroom", and "No, thank you" to the cookies or birthday cake, then wait until your child is safely asleep and come cry and scream to us online.  We'll be here for you.

6.  Know your rights.

Although you may not think of your child as disabled, a considerable body of disability law exists to protect your child while attending a federally funded school.  Here's a quick breakdown.

Section 504 of the Rehabilitation Act of 1973 (Section 504) requires that all children be provided a Free and Appropriate Public Education (FAPE).  Essentially, your child has the right to go to school and must be provided with necessary services.  If your child has a disability, then the school is required upon request to create a 504 plan that details how your child will be accomodated and his or her educational needs will be met.

The Americans with Disabilities Act Amendments Act of 2008 (ADAAA) expanded the the definition of disabilities in Title II of the Americans with Disabilities Act of 1990 (ADA) to specifically include "hidden disabilities" such as food allergies that have the potential to interfere with a major bodily function, such as breathing.

The Individuals with Disabilities Education Act (IDEA) details 13 different categories of disability which qualifies students for special education and related services.  Schools must develop an Individual Education Plan (IEP) for qualifying students.  This may not apply to you unless unless your child needs other services.

Your school should have an Emergency Action Plan (EAP) for your child.  They may also develop an Individual Healthcare Plan (IHP or IHCP) in addition to or instead of a 504 plan.  Many food allergy parents and advocates do reccomend requesting  a 504, though, since it gives parents recourse through the Department of Education Office for Civil Rights if it is not followed by the school.

Not everyone, including school employees, will be aware of your child's rights.  You may run into someone who thinks you should homeschool or that food allergies aren't really a disability.  If you do have difficulties with your child's school or district, the Wrightslaw website is one of my favorite resources for any parent needing accomodations for their child at school.

7.  Trust your gut.

Nothing scares me more than someone, whether it be a server in a restaurant or a staff member at school, who tells me not to worry.  If that person doesn't think I should worry, then they haven't been listening to me about the life threatening nature of my son's allergies.

If it is a restaurant does not seem as if it can accomodate your needs, then politely explain that you will not able to eat there, pay for drinks or anything else you have already received, and leave.  No need to make a scene, the loss of revenue will speak volumes.

If it's a social event, whether a family gathering where a relative feels free to put out a bowl of nuts and blows off your request to put them away, or a birthday party which becomes covered in ice cream, just excuse yourself and leave.  You are not required to stay in any situation that endangers your child!

Bonus Tip:  If you are ready to take on allergy friendly baking, offer to bring goodies to these events.  That way your child will be able to be included and eat something everyone else can, plus you won't be dependent on your host to provide safe food for your child.

Cartoon courtesy of the wonderful Tiffany Glass Ferreira.
As scary as a new food allergy diagnosis may be, it really is managable, and there are lots of us happy to help.  I asked my kiddo, who is going to have an oral challenge in a few weeks, if he had any advice to add.  He said to tell parents to keep going back to the allergist and get blood work done every year, because their kids might outgrow their allergies.  Then they'd be able to have an oral challenge at the doctor's office to find out for sure, too!

I'd love for you to leave your best advice in the comments as well.  The food allergy community is truly amazing, and has helped me more than I could possibly say.  We really are stronger together.

20 comments:

hsw said...

Love this!

Kelly B said...

Great post! Super informative... I'm definitely keeping this close when I meet up with new allergy families and might even pass it through my family as well learn to work with our kids' food allergies.

Mary said...

Very good information.

Lynn said...

Fantastic post, so very well summarized! I love your positive tone and agree with all your points. I'll be bookmarking it for future use!

Susan said...

I'm a new food allergy mom and greatly appreciate your words of wisdom. Thank you!

Paul Cox said...

Really appreciate this post, it is so good to see all the information you need all on one post

Jeffrey said...

Great info, thanks. I think few people out there realize just how serious and life threatening some allergies in childhood can be, so a big 'thank you' for making us all aware.

Kerse said...

It's nice to see so much good information listed so clearly and concisely. Bookmarked. :)

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Kelly Williams said...

I agree with the Keep it simple idea. You can still have an elegant dish despite being simple. This is also to avoid any form of complications like allergies.

Bob Lewis said...

Very well researched post.

One of my kids has milk allergy. We all have been trying to treat it. But I thought if my kid does not drink milk, he is not going to loose anything in life. He can have something else equivalent to milk.

Kenneth said...

This is very detailed and I am thankful that there are plenty of ideas and resources online. I am still learning but doing good. It is hard to adjust at first and it takes some time before you manage to organize a good plan for everything. Allergies can be very dangerous so for a parent, it is really scary and it will definitely stress you out. This list is really wonderful.

Krupp said...

Thank you for a very detailed and an informative post of yours! This would be very helpful for those parents whose child has recently diagnosed with food allergies.

I must admit having that kind of disease isn't easy, you have to be very careful on what you eat, and you always have to bring your anti allergy medications or the Epi. This would be very helpful if suddenly you experience an allergic reaction.

Manny said...

Loved the "Science of Anaphylaxis" article, Informative and timely for me and my partner as we are awaiting our first appointment with an allergist.
cheers!

Tony Young said...

No consuming diary and gluten is a good advice for even those who have no food allergy just simply want to be healthy. That's what the paleo diet is, partially, about.

seth the dad said...

Thanks for the post... always searching for better ways to keep the kids and family healthy. Its so great when you run across something that can actually work! Thanks again

Roy Montgomery said...

Allergies can indeed be a problem. My child fortunately will eat anything with no complaints. On some occasions we may even wish for something to suppress his appetite. Although he is a healthy growing boy!

Alana said...

I have an aspirin allergy (I get serious stomach cramps when I take any medication that contain aspirin). I think the most important thing one can do is to take the time to read the labels to everything as well as have an antihistamine in the house in case of anything.

Olivia E. said...

Can’t understand why people have so many allergies now, and of course this food allergy is the most annoying thing I have ever seen. My baby bro is also suffering from the same problem and its really hard to see him suffer. I don’t know how helping him but there is nothing I could do for him.

Mama Glover said...

My one year old son has recently been diagnosed as allergic to dairy, eggs, & peanuts. I haven't been quick to look for support, since he is little & still eats mainly puréed foods (that I make sure are safe). But as he is getting older, he is becoming more independent & curious to try table foods. Coming to the realization that I DON'T have control has been truly terrifying to me lately. I am so relieved to have found your blog. Thank you!