When we first found out Olivia was born with life threatening food allergies, she was only tested for peanuts and tree nuts. At the next appointment, following some negative reactions to certain foods, we added an allergy to eggs and dairy and at the third and final test, we added wheat. At each appointment we got more bad news piled on us. And despite the fact that these diagnoses were all unfavorable, it was nice to have answers. Our experience giving Olivia her first foods was unpleasant – she didn’t “like” anything we gave her – spaghetti, bread, and of course peanut butter – all did not go over well! So to find out that the reason she didn’t “like” the food was that they made her sick was a double edge sword – well, at least we had answers.
At our last appointment, Olivia had to get yet another skin test. The skin test involves a prick that is dipped in the allergen, and that prick is then pushed into her skin. We then wait 15 minutes to see if her skin reacts to the allergen. This time around, wheat and egg came back as being smaller than they were before which prompted the allergist to suggest we do a food challenge. A food challenge is when you are in the office surrounded by doctors and nurses and you give the allergic person the allergy to see what they can tolerate. Our hope was that because the skin test came back smaller than before (which means she is still technically allergic) she may be able to tolerate some wheat and egg! This would calm some of the anxiety we have on going out to eat or in public places in regards to cross contamination and touch reactions. We chose to do the wheat food challenge because if she passed this test, our world would open up! Bread? Toast? Crackers? YAY!
When you do a food challenge, the person being tested must not have any allergy medicine 5 days prior to test day. I also wish we would have known – don’t fill that kid up on lunch! They have to eat a lot of their allergen to pass the challenge – for Olivia, she would have to eat an entire roll and a half! If you know Olivia, that will make you laugh – which we totally did – at the nurse. She barely eats that much food in a day! Let alone in one sitting of a food she’s never had! But we were optimistic. At the beginning of the appointment they confirmed that Olivia wasn’t sick with any runny nose, cough or congestion. Then, she was skin pricked again to be sure wheat was still st the same levels as before. She was then cleared to be challenged!
The nurse prepared 5 doses of the allergen for the child to digest. We were armed with benedryl, 2 Epipens and water just in case we needed it! In the worst case scenario, Olivia could have gone into anaphylactic shock right there in front of us from us deliberately giving her what she’s allergic to – needless to say, my husband and I were nauseous and white faced the entire time. The first does went amazing! Olivia ate it in under 30 seconds! She seemed to love the flavor – of course she would – she is my daughter and bread is a carb. She got down on the floor and played wirh her books and puppies between every dose. The second dose was as easy as the first. The third dose is where we saw Olivia really slow down. She barely got through this dose which was a quarter roll. We thought maybe she was just getting full, until we started seeing more ominous symptoms…
After her third dose, Olivia started to sneeze every couple minutes. I remember looking into Dan’s eyes and its like we spoke to each other with no words. We knew sneezing was a symptom of anaphylaxis. Her sneezing seemed to subside so we moved forward. Her fourth dose was a giant one. We sat together and I held the first bite up to Olivia and she refused. We tried to hard to get her to eat more bread – we were so close to the end! She only needed to finish five doses to pass – but it wasn’t happening. So we knew she was all done. All of a sudden she started to sneeze again but this time, it was paired with coughing and a runny nose. We knew her body was fighting the wheat and it was time to call it. The doctor came in to check her out and assess if we needed to give her the Epi Pen. Her symptoms were mild and only required Benadryl for the time being. We waited in the office for an additional 60 minutes to be sure she was safe and would not go into anaphalixis. After we were cleared to leave, the doctor confirmed what we already knew – Olivia had failed her wheat challenge. Failing a food challenge meant she would need to continue to avoid foods containing wheat, that may contain wheat or foods that are made on shared lines with wheat. This was something we were already doing so we were used to this scenario but we were very disappointed the results did not turn out better. On a positive note, since Olivia was able to tolerate some wheat, the doctor was optimistic that she may not be contact reactive to wheat, rather is only allergic if she ingests wheat.
We left the office feeling defeated and uneasy. Olivia was irritable and exhausted – her nose continued to run but her other symptoms subsided with the Benedryl. That night we watched her closely, fearing a biphasic reaction to the wheat – this is a secondary anaphylactic reaction that can occur hours after the initial exposure to the allergen. We held her close all night and luckily, she was back to her old self in the morning.
In the days that followed, Dan and I thought about whether we felt that challenging wheat was worth it. Despite being terrified in the office and the failed results, we ultimately think it was 100% worth doing. We learned that if Olivia were to touch a loaf of bread and put her hands in her mouth on accident – she would probably be okay! Her body was able to tolerate a small dose meaning if she comes into contact with wheat, she should be able to handle the allergen. And we learned that she is indeed allergic to ingesting wheat – something Dan and I weren’t totally sure of before the challenge. We are hopeful she will outgrow her wheat allergy – being that nearly 80% of kids outgrow their allergy to wheat by age 5! So, even though food challenges are completely terrifying, they gave us a lot of information and we feel it’s a necessary part of Olivias food allergy adventure.
In the months to come, we will have a baked egg challenge! This challenge requires us to bake a delicious egg muffin for her to eat! If she passes this challenge, we can start baking her items with egg in them which will have added calories and protein! I will keep you all updated when that challenge is! In the meantime, just keep advocating!