I need to catch you up on what has been doing on around our house. To say the least, things have been extremely busy and I am emotionally exhausted.
As Brody is getting older, my husband and I have been wondering to what extent are Brody's food allergies? Is what came up on the blood and skin tests accurate? Are we withholding an allergen for no reason?
As you know, it is so difficult with food allergies, because it can sometimes be hard to determine the severity (and sometimes even the accuracy) of the food allergies from the blood test and skin test alone. You may have heard that the most accurate determination of a food allergy is an oral food challenge (which I am NOT advocating be done at home). We experienced this first hand as Brody's blood test showed positive to wheat, but his skin test did not. We were told by our allergist that we could slowly introduce wheat, and Brody is fine with it. Could we live wheat free, absolutely? But, it really opened up a world of opportunities when we were able to add it back into our diet. Plus it knocked one allergen off the list, which encouraged us.
We accidentally had an oral challenge with milk back in November and we knew from what happened, that Brody was severely allergic to milk. We were really curious to see if Brody would be allergic to baked egg. The reason we chose baked egg, is that there has been some studies done, that have shown that sometimes children allergic to milk and/or egg can have the allergen in baked form because the body might recognize it differently. This was very intriguing to us. We knew from the blood and skin test that there was a pretty good possibility that Brody was allergic to egg, since they both showed positive. We have never given Brody egg of any type since we found out on his blood test and I eliminated it from my diet. Part of me did not want to do the oral food challenge, but another part of me wanted to because I thought, "What if we are avoiding baked egg and he is not even allergic to it?" For me, it wasn't necessarily the excitement of putting egg in something (because as you know, most food items that contain egg also contain milk), I think it would be more of the hope that he is moving towards outgrowing his food allergies.
About a month and a half ago, I called my allergist to see if insurance would cover an oral food challenge. I was told to contact my insurance company and insurance said they had never heard of a food challenge before, but might consider covering it if I faxed them a letter of medical necessity. My allergist wrote the letter and I also included a letter that we wanted to do the food challenge in a controlled environment because otherwise, we might have to go to the emergency room if it was not done in a doctor's office, which would cost the insurance company a lot of money.
A month later, we got a letter from the insurance company stating that they would cover the oral food challenge. I was so excited because I felt that it was a little victory. The insurance company acknowledged that a food challenge would be best done in the doctor's office. We were extremely excited!
We scheduled a food challenge as soon as we could after finding out the news. The night before the challenge, I made homemade blueberry, banana muffins with one egg. It was so weird to use egg in a muffin recipe since we have been egg free for almost a year now.
When we got to the appointment, we discussed every possibility with our allergist. We then were given the go ahead for Brody to eat a bite of the muffin. I was excited, but nervous. I handed it to him and he shook his head. I was so confused, my child LOVES muffins! The doctor left to give us some privacy and we tried to encourage Brody to eat a bite. Brody just shook his head and tried to feed it to me and threw it on the floor. My husband, my older son and I all ate a muffin and said "yum" and Brody still would not take a bite. This kept on for about an hour and we then decided it would just be best to re-schedule. For whatever reason, it was not meant to be for that day. As soon as we got out to the car, Brody ate his soy nut butter and jelly sandwich. It was pretty comical. We just had to laugh.
We rescheduled a week later and I decided to make safe chocolate chip cookies this time (who couldn't resist a cookie?), but added an egg to the recipe for the challenge. My husband and I stayed up late the night before making the cookies. The food challenge was at 8:30am in the morning, hoping that Brody would be hungry and not have a repeat of what happened before (our allergist is about 40 minutes away so we didn't want the previous scenario to keep playing out). We got up in the morning, packed up and left for the appointment. We did the same protocol as before and I asked a couple of questions just to make sure I knew what would happen in case there was a bad reaction.
We handed the cookie to Brody and he took a bite. We went into a play area to distract him from wanting the rest of the cookie and watched him carefully for about 45 minutes. He looked great. He didn't have hives, eczema, or breathing issues. He was running around the room playing with the toys. My husband and I were pretty encouraged because we thought if something bad was going to happen, surely it would have happened already. We had seen before what a sip of milk could do to him, and it happened almost instantaneously.
After the 45 minutes, we were given permission to let Brody eat more cookies. If he passed this part, we could feel confident giving him things with baked egg in it at home. He started eating them and we sat there and watched, very carefully. All of a sudden, he sneezed. I thought it might be a coincidence, and then he started to sneezing consecutively. We weren't too alarmed, because if that was the worst part of the reaction, that was tolerable. A couple minutes after he started sneezing, he wanted to be held, lost color and started to act like he was about to fall asleep. He was almost limp and not interacting the way he had been before. This caused us to be alarmed, because this was unlike our child. The doctor and nurse were right there with us and we tried to administer Benedryl to Brody, he refused it, which was weird because normally he doesn't mind it.
The doctor listened to Brody's breathing, which was my biggest concern since his accidental milk ingestion made him have difficulty breathing. Our next concern was his blood pressure dropping because he was acting so lethargic. I knew we were in good hands with our doctor and felt confident about being at a hospital (that is where our allergist's office is located) in case things went downhill quickly. Our doctor tried to get take his blood pressure and couldn't get an accurate reading because Brody didn't like the cuff on. Our allergist then said the wanted to be on the conservative side and wanted to administer epinephrine. We were completely fine with that because we really weren't sure how his body was responding and wanted to be on the safe side.
Epinephrine was given (but no like our Epi-Pens), it looked like a shot that your child gets at the doctor's office and was administered in his arm. Within minutes, Brody's color came back and he started to respond and act more like himself. Not too long after that, he threw up for this first time ever. Brody then accepted his dose of Bendryl and started to play with the toys again.
I can't tell you how crazy it is to watch food do that to your child. Do I regret it? Absolutely not. We were in a controlled environment and I felt confident with my doctor and the protocol. The scenario could have been completely different and we could have walked out of the office with the freedom to feed Brody food with baked egg.
Did it go the way we would have liked it to? Not necessarily, but I feel I can share and educate others on what ingesting an allergen can do to a food allergic child because I have first hand experience. I feel I can recognize a reaction quicker than I did before. I feel completely confident in the Epi-pen and know without a shadow of a doubt that I could administer it to Brody because I saw what a difference it made.
Where do we go from here? We will continue to be milk, egg and peanut free for awhile, and that is alright. I feel like we are able to handle the food allergies much better than we were able to a year ago. I hope that maybe some of our experiences can help someone who has just been recently diagnosed and feeling overwhelmed. I know I am on this journey for a reason with my son and I am going to make the most of it by educating, advocating and continuing to make Brody feel included, regardless of his food allergies. This little boy has taught me so much and I continue to learn every day. I am at peace with what happened yesterday and maybe in a year, we can try baked egg again (his milk reaction was worse so we will not attempt that for awhile).
Until then....we are allergen free!