I'm still feeling damaged as I write this post. The trauma of Monday’s food challenge still lingers. It began innocently enough with the allergist saying, “Let’s do a food challenge for egg.”
Great idea, thought the parents. Our nine-year old called the scheduled challenge “the day I’m going to die”.
It’s hard to explain to a child that they should eat a food they’ve been told could make them very sick. We really worked hard to manage his anxiety. We’d been through food challenges with him before, but he’s too young to remember. We explained, and the doctor re-explained, the process. A tiny amount of egg would be given, with increasing amounts over five ingestions. We would wait 20 minutes between each ingestion to see if there would be a reaction.
The hard part was separating the anxiety symptoms from physical symptoms. The first level- no problem. After the second ingestion, he asked if his tongue was swelling. We said no, doctor said no, we proceeded. On to level 3. He asked if there was something on the side of his lip. He thought it felt funny. Nothing there. Proceed to level 4. He said it was hard to breathe. We called the nurse. Breathing fine. His heart rate was up, but everyone thought that was due to anxiety. For the final ingestion, he had to eat the rest of the egg. There were tears and “I hate this. I don’t want to do this.” Doctor came in and said that all was going really well and she expected he’d be able to eat eggs on a regular basis. He forced it down and we waited. A minute later, he vomited a little. Everyone studied the projectile and determined it was mucous. No problem...for a few minutes.
Things began to go downhill and then gathered a fierce pace for a fast descent. He started scratching his back. A little red, no problem. A few minutes later, there was a hive. We wait. Soon, another hive on his stomach. The nurse brought in Benadryl. We wait. Soon he began scratching furiously- all over- and said he felt like he was going to be sick. His skin turned bright red and become rough. Eczema everywhere. He looked really bad. Is there anything more painful than watching your child suffer?
The doctor gave him Zyrtec and a steroid. Minutes later, violent vomiting. The egg came up, but so did the medicine. Apparently the Benadryl had enough time to start to work because over the next hour the skin symptoms started to recede a bit. After four hours with strict instructions to avoid egg, we went home. We had more steroids and antihistamines to give throughout the next 12 hours.
Amazingly, he looked like himself again the following morning.
“That was the worst day of my life,” he said the next day. I remember a few rougher days in his early years, but for him, I agree, this was the worst.
We did learn some things, though:
He now really understands what an allergic reaction is and how he feels when it happens.
I would do a single or double blind challenge IF we ever do a challenge for him again. With an older child who is anxious already, it would be best if the child did not know if they were getting the food or a placebo.
We know without a doubt, that eggs need to be avoided.
He was already dealing with spring allergy symptoms, so we also learned not to schedule a challenge during a season of allergy symptoms.
So, I lost some faith in medical science this week. When it comes to food allergies, we know that skin tests results are often unreliable and that blood test results have a lot of false positives. The true test is a food challenge, but isn’t there a better way to do this? No one should have to go through this- especially our children. I’m still upset, but I know over time this sadness will turn into action. We need better diagnostic tools for food allergy. We must keep pushing education and awareness which will result in more funding and more research. We can do better. I know we can.
