Having a food allergy is no laughing matter (Part I)

In my last post, I mentioned that Nicholas had an allergic rxn to something when we were dining out at Leo's.  This was likely due to cross-contamination during the prep of some salad ingredients, since we are VERY careful about what we order.

Having worked in food service for MANY years, my guess is that a salad containing hard-boiled eggs was prepared/prepped on the same cutting board (and maybe even using the same knife) as Nick's greek salad was that he ordered.  That SIMPLE mistake *could* potentially cost my son his life.

I felt the need to share more about this experience, and our experience as a parent of a child with food allergies, b/c it seems that *some* people, including the media, make light of the severity of food allergies.

I recently read an article written by LA Times columnist (*that* should have been my FIRST clue that the article would offend me – he's a 'columnist', not a reporter) Joel Stein, in which he claims that "…Allergies are a Yuppie Invention".  If you'd like to read this article for yourself, please click here: Offensive LA Times Article –

Robert A. Wood, MD, a member of the Food Allergy & Anaphylaxis Network's (FAAN) Medical Advisory board, recently wrote a rebuttal to Mr. Stein's column.  You can find *that* article here: Food Allergies are Nothing to Laugh At

In Dr. Wood's rebuttal, he points out that:

When you tell the parents of a child with a food allergy that their
child could suffer, wind up in the hospital or worse unless they follow
strict instructions from a doctor, you begin to understand why parents
of children with food allergies are so vigilant.
For those parents
raising children with food allergies, educating others to take food
allergies seriously is vital to preventing a reaction.

He goes on to say…

If Stein were to spend a day in my clinic, he
would quickly learn that food allergies are very real, truly dangerous
and really do affect families of all races, ethnicities and
socioeconomic strata. He would also learn that although food allergies
do indeed cause anxiety, the anxiety is legitimate and that in spite of
this anxiety, most families have an accurate perspective of the disease
and practice a completely appropriate level of vigilance.

I share this here, on my blog, because I feel like in a way, some people don't understand WHY I do the things I do, or am the way I am.

  • Unlike an exposure to viruses, people do NOT build up 'immunity' to allergens.  In fact, quite the opposite occurs.  Once it is known that someone suffers from an allergy, they should avoid the allergen at all costs.  Further exposure to the allergen itself (in Nicholas' case – eggs) creates a snowball effect.  The rxn becomes more and more severe the more times the person is exposed. That is why AVOIDANCE is the best defense when living with a food allergy.
  • For this reason, we take our own high-chair into restaurants.  No, I'm not a 'germaphobe'.  I'm an 'allergen phobe'.  Wet wipes are NOT enough to neutralize the allergen – an allergen is a protein, which takes either extreme heat or enzymes to denature &/or deactivate.  I'm sorry, but I'm NOT going to take a risk with my child's safety by having him sit in a chair that could potentially be contaminated with eggs.  Not after what we've been through.

  • If we've never eaten at a restaurant with Nicholas, I have to read the menu very carefully and utilize my own knowlege (thank you, Food Science Degree and work experience at Neogen Corporation) to decide what I *might* want to order for him.  Then, I have to speak with the manager.  Sometimes, the managers are 'less than insightful' about the ingredients of their menu items.  Many times, they'll want to 'waive liability' by telling me that they can't guarantee with 100% assurance that the items are free of the allergen in question.
Some restaurants, on the other hand, are MORE than helpful.  Chili's, for example, has menus tailored to your specific food allergy.  Trying to avoid eggs?  "No problem!" said their manager, and he was back within a few minutes with a computer printed 'egg free' menu.  Though we've not been there ourselves, I've been told that Red Robin is the same way.
  • I feel the need to address the issue of playdates/playgroups: I haven't actually talked about this with anyone but Nick, my neighbor Lisa, and Rita.  Why?  Because I don't want to offend any of my friends with what I have to say, however, I must share.  I can't hold it back any longer.

I wipe Nicholas' hands down after he plays with toys/books/other things that are in a 'shared' environment.  Again, no, I'm NOT a 'germaphobe'.  I have found, through experience, that *most* people (note: I did not say ALL – but a majority) just don't think about what could happen if a child had scrambled eggs for breakfast, and then touched a toy and shared it with Nicholas.  Or if they had french toast, pancakes, waffles, cookies, cupcakes, or a multitude of OTHER food items that contain egg. 

That SIMPLE transaction from child to child *could* cost Nicholas his LIFE.  And I'm sorry, but I've already buried two of my children and I would like to prevent any harm from being done to Nicholas.

I will admit: I don't do many playgroups/playdates in which I feel I can't control the situation.  There are just TOO many risk factors.  For example, a parent could carry, in their diaper bag, a food item containing eggs.  The child could get into the bag, and share that food item with Nicholas when someone wasn't looking/paying attention.  To me…having 'adult' time out of the house just isn't worth that risk.
  • While we're on the topic of playdates, I must discuss childcare. There are a few select individuals that Nick and I call on when looking for childcare for Nicholas.  His food allergy is a MAIN part of that.

Back in June, when I resigned from On Assignment, I was approached by a local staffing company about a job.  It would have been a GREAT position.  Part-time (full-time to start, during training) and was local.  Less than 15min from our house, and minutes from TBP's, Nicholas' daycare.  The pay would have been comparable to the wage I was making at OAI.  So why didn't I accept the position?  FEAR.  Simple as that.  It had NOTHING to do with money.  Or the hours.  Or the job itself.  We had JUST learned of Nicholas' egg allergy and I just was TOO afraid to have him in daycare.

Nicholas was getting ready to transition from the Infant I room to the Infant II at TBP's.  What does that mean?  It means that he was going to go from the 'non-mobile' infant room to a room where most of the babies were at least crawling, if not toddling.  And that meant a change in the way the meals were handled.  The babies would be fed at a table, together.  And all I could think about was "what if someone wasn't paying attention?  What if a child dropped a cookie, and Nicholas was on the floor, and ate the cookie.  And they didn't notice?"  The worse case scenario, was of course, that he could die.

You see, Nicholas' rxn is a stereotypical 'anaphylactic' rxn, in which his lips and tongue begin to swell, his airway becomes constricted, and he has difficulty breathing.  In mild rxns, we can administer a dose of Benadryl (antihistamine) and it will stop the rxn.  Given a larger amount, and he may require a dose of Epinepherine via an injection.  Even *that* may not be enough, given the severity of the rxn.  Anytime that we have to administer the EpiPen, we've been told to call 911, just in case.

That being said, we frequently look to Nicholas' former provider at TBP's, Katie, to be our babysitter.  Reason?  She's trained in Infant CPR/First Aid.  Of course, we ask our family members as well.  If my brother and my sister-in-law lived closer, we'd ask them to watch him more frequently, as they have a child with food allergies, so they *get it*.  The same holds true with our neighbors, Dan & Lisa.  Their son, Will, born just 2 weeks before Nicholas, has SEVERAL severe allergies.  So they 'more than *get it*'.

Thankfully, our pediatrician 'gets it' and didn't hesitate to refer us to a peds allergist after Nicholas' initial reaction.  Ironically, Dr. G was the person that suggested that we try eggs at the age of 9mos. At his 9-mos well-baby visit, I questioned whether or not it was safe to 'introduce' certain foods that are known to be part of the Big 8 – that is, the eight foods most likely to cause an allergenic response.  They are: fish, shellfish, milk, egg, soy, wheat, peanuts, and tree nuts.

Since he had already had many items with milk, soy, and wheat, I was curious about eggs, because it would be an 'easy' meal for me to prepare for him.  Dr. G told us that waiting to introduce eggs was 'old school' and that we could try them since they're such a great source of protein and fat, which is necessary for brain development.  And so, we scrambled up some eggs, and found out within seconds, that Nicholas was allergic.

When we were referred to Dr. McMorris (his peds allergist), one of the first questions he asked was "Why did you try eggs so early?"  When I told him that we had asked the pedi about it, and she said we could try it, he actually told us that he would "make a note of that and call her."

At our next visit with Dr. G, she apologized immensely for recommending that we try eggs and told us that our experience was going to change her recommendation to other patients.

As a whole, I have found the UM Health System to be extremely cooperative, helpful, and supportive.  Whenever I have a question, I can contact Dr. McMorris and he'll get back to me within hours.  That is SO reassuring, especially when you have a situation like we had at Leo's last week.  As I mentioned in my last post, I called the on-call allergist this weekend.

We had an appointment today, and saw Dr. McMorris again.  He assured me that the steps that we are taking to AVOID eggs ARE the right steps, and that sometimes, cross-contamination can occur, and it's usually in restaurants.  So, to give Nicholas' immune system a break, we'll either a) bring our own food when we go out or b) not go out to eat with him.  He also assured me that my instincts are right, and that I should go with them. 

I asked him today, "What is the likelihood that BBK#2 will have a food allergy?" and his answer, unfortunately, was "we don't know."  Genetics are *thought* to play a role but who's to say if BBK#2 will be allergic to eggs, or perhaps another food?

To be continued…

P.S.  Here are some great resources to check out with regards to FAQs about Food Allergens:
American Academy of Allergy, Asthma, & Immunology Tips to Remember
Food Allergy & Anaphylaxis Network (FAAN) FAQs

  

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