2014-03-05

The Language of Anaphylaxis

It began four or five months ago. Sometimes after eating in the evening, my kiddo would complain that his throat itched or his tummy hurt. Of course, I would prepare for full scale anaphylaxis. Several times there were additional symptoms. Hives on his face, tightness in his throat or the terrifying slurring in my child's speech that meant his tongue was starting to swell.


We made a few trips to the emergency room when the mystery reaction progressed beyond itchy throat and upset tummy. Our allergist ordered RAST testing for a some potential new allergens, but we couldn't make it an entire month without antihistamines, which can throw off the IgE levels, and it kept getting put off.

As the weeks went by, the frequency of my son's reactions increased. We couldn't take him to the emergency room every single evening, so my husband and I took turns sleeping so that we could watch our child and make sure he continued to breathe during the night.

I called food manufacturers. I learned that the only wheat pasta I had been able to find without egg in it still had egg in the facility, so I eliminated it from my child's diet. Then I found out Jennie-O Turkey puts at least one of my son's allergens into their turkey sausage as a "flavor", which creates a risk for cross contamination in their plain ground turkey. My guess is garlic, but the rep didn't say.

The Jennie-O phone rep also gave a horrible canned response to my suggestion that the company include all the ingredients on the label. She said they couldn't share proprietary information because that would allow their competitors to learn what made the Jennie-O brand special. When I mentioned that the company also sold their products in Europe and the EU requires complete ingredient labels, so they were already providing that information in other countries, the rep suggested I take my grievance up with the FDA.

You want me to advocate for more stringent government regulation of the food industry? I can do that.

Our allergist decided not to delay the RAST testing any longer, despite the antihistamines in my son's system. There were no new positives, only the same increased IgE levels to the the nine food proteins of which we were already aware.

He also put my son on a daily antihistamine. We began giving him Zyrtec tablets in the evening. My son's symptoms promptly escalated. I rechecked the label and found "lactose monohydrate" listed in the inactive ingredients. There was no additional information either on the label or on the website indicating that it might be a milk product, but I called the manufacturer as a precaution.

Sure enough, it was a milk derived ingredient that had slipped through the sieve like FALCPA legislation which does not require food allergens be listed on medications or health and personal care products. So perhaps that's another issue to discuss with the FDA. We switched him to a liquid generic form of Zyrtec which didn't contain any of his allergens.

By the New Year, my kiddo had begun to lose weight. My husband and I reached a level of constant stress and anxiety, not to mention sleep deprivation, that is difficult to describe. I had long since stopped blogging, despite planning a series of holiday posts months before.

As the symptoms progressed to constant throat and stomach discomfort which spiked after eating, our allergist wanted to have my son evaluated for Eosinophilic Esophagitis. We saw a gastroenterologist who decided to perform an endoscopy and take biopsies of my son's throat, stomach and upper intestine.

We had to wait two weeks for the procedure and another week after that for the results. During that time I removed wheat and soy from my kiddo's diet, since those were the only two foods on the EoE Elimination Diet he wasn't already avoiding.

All the results were negative. The nurse practitioner suggested we have our son evaluated for anxiety. I began baking bread again.

We returned to the allergist who has started treating the kiddo for reflux with Zantac. We are now avoiding acidic foods, such as tomatoes and citrus fruits. His appetite has improved, but the constant discomfort in his throat and stomach continue, so we still don't have a definitive diagnosis. I don't even know whether my son's symptoms are unrelated to food allergies and he is simply describing them in the words he knows best, the language of anaphylaxis.

Our next check up with the allergist is in a few weeks. I've decided to ask our pediatrician for a referral to a psychologist. Even if the symptoms aren't caused by anxiety, my son is still living with a life threatening medical condition which stresses his entire family and plays havoc with his social life. The Kid could use some emotional support.

Until then, I make the terrifying decision every night to put my child to bed without treating symptoms identical to the first stages of an allergic reaction. I've started to make some more hard choices. A few friends have kept me from the brink of despair these last months, but mostly I've retreated from the world and just focused on day to day survival and managing my child's medical needs.

It's time to come out of my cave and write again. There are recipes to post, stuff to review and months worth of email to answer. Hi everyone. I'm back.

10 comments:

Elizabeth DiBurro said...

Hey Libby, I am so sorry to hear that there are still no improvements. I think of you and your family often and hope that you get answers soon. (((hugs))) I'm here if you want to chat to someone who "get's it".

Libby said...

Aw, Elizabeth, thanks so much. Would love to talk sometime, even if not about these kids of ours!

Anonymous said...

I enjoy your blog very much, I wish you had come back on a better note. I am so sorry to hear of this new mystery that you have to solve. My son has almost identical allergies that your son has -- I have been following and using your recipes for years. Do ever try to feed your son only "NON-GMO verified" or Organic Food ? It is expensive, but I found, when I feed my allergic kids as much Organic as possible, they have gotten better, even grown out of some of the things, they are allergic to !

Mikhaela from Safe & Scrumptious blog said...

Oh, I don't know you but I love reading your blog and I just want to give you a virtual hug for this beautifully written post. My daughter has many similar allergens (dairy, eggs, nuts, plus sesame and mustard) and we have also had times where we had to keep cancelling RAST tests to track down mystery allergens causing reactions because we had to keep using the antihistamines.

I currently suspect some kind of seed or spice is the culprit (well, I suspect canola/rapeseed, paprika, or cinnamon... I'm not sure at all).

Here's hoping things get better for you and your kiddo soon.

hsw said...

We all love you so much and are pulling for you. Seriously feel free to call or whatever if you need anything. - Homa

Selena said...

I send you many ((((HUGS))))! I hope that you get some useful answers, very soon!

B said...

I am so, so sorry, Libby. That's terrifying. I am a college student with anaphylactic allergies and have been having mystery reactions for the past six months, although not as frequently as your son. Allergies - you learn how to live with them, and then they start changing the rules. The Kid is lucky to have such a great mom.

Alisa said...

You've been greatly missed Libby. I'm so, so sorry for all of your anguish. Big hugs and lots of well wishes to you and your little man.

Janet Kamenick said...

I wonder if it's that cross reactive condition that people get from eating foods that are similar in protein make-up to the foods they are ana too or environmental allergies. I can't remember what it's called but I know people who have itchy throats and stomach cramps from eating an apple because apple tree is similar to birch and the pit in peaches causes those symptoms in some. I cannot imagine the stress you live with. My son saw a play therapist for anxiety due to his food allergies and feeling "different." I'll keep you in my prayers and hope to see an update this spring.

Libby said...

Hi Janet! We did consider oral allergy syndrome, but my son has not reacted specifically to any of the fruits that cause it. Right now by treating for reflux the symptoms are improved, but not gone. Next week we have a follow up with the allergist and next month an evaluation for anxiety with a psychologist. It's hard to update when I don't have much concrete info, but I will do so. Thank you so much for caring and asking! The food allergy community really is wonderful!