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Tuesday, March 1, 2016

I officially joined a club I never wanted to join

I just have to get this down. I'm still a little shaken up. Dax, however, seems just fine.
 
How do little bodies bounce back so easily sometimes?
 
*It turned into a longer post than I originally planned. I just want it written in one spot.*
 
 
Dax has a somewhat complicated history of allergies/intolerances.  He was diagnosed with milk protein allergy as a newborn and we were advised to take dairy, eggs, nuts, beef, and soy out of my diet since I was nursing him or put him on a prescription specialty formula. (Later, he tasted mashed green beans and had a GI reaction.) The doctor informed us that in most cases like this the child outgrows this by 1 but sometimes can outgrow it by 5.  I took all those foods out of my diet and successfully nursed him. If I accidentally consumed those foods (some of those foods are well hidden in foods), he would arch his back, scream in agony, have trouble with bowel movements, spit up/puke, and was overall miserable. It was considered a gastrointestinal allergy. However, not all doctors agree that GI reactions are true allergens and they are not quite as easy to test as the anaphylactic reaction is.

 
I saw a few allergists who told me his GI reaction didn't count as an allergy, that his GI reaction to foods would NEVER EVER be able to turn into an anaphylactic reaction, and that testing him would be a waste of everyone's time since GI allergens don't test well. They advised me to just give him a bite of the food in question and see what happens.

 
We saw a GI specialist. She told us GI reactions are considered allergic reactions, it is super hard to test for, and we should just give him a bite of the food in question and see what happens. I wasn't exactly happy with these answers but I received them from physicians at one of the best hospitals in town. I did some more research and began testing him at home. I had Benadryl ready and gave him small portions of some of the offending foods to start with. He successfully passed soy, beef, and beans with no issue. He didn't even complain of a tummy ache.  

 
Then we tried eggs when he was around 2.5 or so. He immediately got the red face, made a choking sound, and overall didn't feel well. I gave him Benadryl and he cleared right up. So we kept eggs out of his diet and my PCP (who is amazing) gave us a prescription for an EpiPen. He successfully tried milk products as long as it is baked in things.  A cup of milk still makes his tummy hurt and gives him bowel movement issues. I have yet to try nuts.

 
Saturday afternoon, he got ahold of cookie that had eggs and nuts in it.  He slowly got a bit of a red face, started scratching his tongue on his teeth. Then he started saying he didn't feel quite well and needed to lay down to rest. He started coughing and I heard a wheeze. I gave him the Benadryl. He still had a cough and the wheezes seemed a bit more prominent. His eyes were watering and he kept rubbing his nose because it was itchy. I took out the EpiPen and he begged me not to give it to him. We had practiced using it and talked about what to expect. I held him tight and gave him the EpiPen.

 
His symptoms didn't start right away. They started maybe 20-30 minutes later. After the symptoms started, though, they progressed pretty quickly. There was no clear sign what he was reacting to but we assumed it was the egg since he had a clear reaction to egg before.

 
After giving the EpiPen, we had to get him to the ER. He improved quite a bit after the EpiPen and was playful by the time we got to the ER. The ER staff was amazing. They were kind and playful with my little guy. They gave us an oral steroid and a breathing treatment as he was still wheezing. His nasal passage looked pretty swollen and he was sniffling a lot. He also developed hives after we got to the ER. The steroid helped with the itching a ton.

 
He was so sweet at the ER and listened so well. He watched TV and enjoyed his apple juice. I think he liked having me to himself for a little bit.

 
He has never reacted like this and needed an EpiPen before. He has never reacted to cross contamination before either. We have been careful about his intolerances/allergies but it never seemed like it was as bad as some people have them.


 
This taught us to be even more cautious. I know an allergic reaction can be worse with each exposure. He has a habit of just grabbing stuff to eat it sometimes but other times is so good about knowing what he can and cannot have.

 
I was sure holding him tighter. It was scary yet I felt in control. Usually, I freak out too much in emergency situations. I was calm, had practiced what to do, had educated myself on what to do.
 
 
Dax seemed to handle it all really well. He was super itchy and just miserable. However, the EpiPen, steroid, and breathing treatment all kind of hyped him up so he was running around the ER room saying his legs just needed to run in circles.

 
The ER staff gave him an adorable teddy bear. It matches the one he received at 16 months old when he had his seizure. He named them and loves on them. I just hoped that he would grow out of the allergies/intolerances by 5. I was putting off testing because I have yet to find a doctor who will listen to me and take his GI reactions seriously. No one wants to me part of this club, this club of families who have to carry EpiPens everywhere, checking labels like crazy, excluding our children from functions to keep them safe. No one wants to have to practice stabbing their child with a needle (the practice EpiPen doesn't have a needle, but I made sure to teach Dax that the real one would) to help them survive and breathe again. No one wants to have a cute little teddy bear sitting in their home as a reminder of the ER visit they sat through. No one wants to have to list allergies on school forms and then deal with class parties and lunch rooms full of kids and random foods. No one wants to see their child scratch his skin until it bleeds or struggle to breathe.

 
We are so blessed and I never want to forget that. Dax is fine. He was fine by the night of the allergic reaction. He seems to enjoy being snuggled a bit more than usual, though. I am still shook up. I watch him a little closer. I'm still hopeful that he can outgrow some of these allergens. I'm still hopeful I will find a local doctor who is kind and will listen to me. I'm hopeful that other parents who are worried and dealing with allergies/intolerances will find peace and strength to deal with this challenge. I'm hopeful that we won't have to use the EpiPen again anytime soon.

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