After E’s acute reactions to egg and coconut in September and October 2013, things calmed down again. We were trying and passing new foods at home and everything was going well. We felt like we were finally getting the hang of this whole FPIES thing.
In fact, E was doing so well that at his allergist appointment in November we decided to start trying some of the foods he had been avoiding since his days of chronic FPIES. His allergist suggested we start with soy and rice. These were both on the “maybe/probably” list. E never had a clear acute reaction to them but they were likely culprits to his chronic FPIES symptoms. Because of the high risk of reaction to these foods, his allergist wanted them to be tried in an outpatient clinic, as an oral food challenge (as opposed to the at home food trials we had been conducting).
Oral food challenges are a controlled way to administer a food that may cause an allergic reaction. They are conducted in a hospital (usually outpatient) or clinic setting in which there are trained healthcare providers that are prepared to respond in case there is a severe reaction and there is a need for emergency intervention. Challenges are used for both IgE and non-IgE allergies to initially diagnose the allergies and to determine if the allergy has been outgrown.
The idea of food challenges was both exciting and terrifying. The challenges gave us an opportunity to take something off of E’s allergen list but there was also a distinct chance that we would be feeding him a food to which he would react. The scientist in me wanted to do the test, more data is always better (even if it doesn’t support your hypothesis). The mom in me didn’t want to take any chances and would do anything to protect her son.
The scientist won and I scheduled the soy and rice challenges. To my surprise, they had an opening the next week and the next one wasn’t until February (over 2 months away). I jumped on the opportunity to get it over with, I mean get the answers quickly and scheduled the soy challenge for the Monday after Thanksgiving, despite the fact that Jonathan was going to be away on business.
Honestly we expected to pass soy. It was never really clear that soy was an allergen. When E was only a couple of months old we briefly switched him to a soy formula. His chronic FPIES symptoms didn’t change during that time but he did become extremely constipated so we stopped the soy after only a couple of days, maybe a week. To the best of our knowledge he hadn’t been exposed to soy at any other time because his allergist recommended that we avoid it just in case, given the high incidence of kids with both milk and soy FPIES as well as his positive patch test to soy. We knew that it was possible that he could be allergic to soy but were hopeful that we had been avoiding it as a precaution only. Besides, he passed chicken without a problem, despite the positive patch test. Nevertheless, I wasn’t going to take E to this challenge alone. Thankfully my wonderful sister was able to accompany me while Jonathan headed off to Tennessee to meet with a client.
The Children’s Hospital of Philadelphia (CHOP) has a great website that outlines what a food challenge is and the procedures involved for both FPIES and IgE allergies (which have slightly different protocols). Basically, we were told to bring 32 oz of clear fluids, lunch for E, myself and my sister, a change of clothes for everyone, and toys or other distractions plus the soy milk that we were going to use for the challenge. E was only allowed clear fluids after midnight the night before. This caused us a little bit of stress because E didn’t really have any safe clear fluids, other than water. We spent the weekend before the challenge scrambling to come up with some clear fluids that we could take. He had been eating applesauce with no problem for months so we assumed he would do ok with apple juice. He hated it. Refused to drink it – full strength or watered down to every imaginable concentration. Apple juice was a no-go. On a whim, we tried Jell-O. Also a no-go. I’m pretty sure E is not a huge fan of sweet foods, probably because he never has them. It’s most parents’ dream but we were a little concerned that he was going to be starving at the challenge and that water wasn’t going to cut it. So we took the apple juice anyway, just in case. For lunch I took the tried and true applesauce, Corn Chex, and a banana, things I knew he could safely eat and it would be a little taste of normal on a very strange day. The change of clothes was necessary in case he failed the trail and covered us all in vomit. My sister and I both bought E some new toys to be a distraction. We also had an iPad, with Curious George and Sesame Street available on Netflix we figured were set.
My sister spent the night before the challenge at our house because we had to be at the clinic at 7:30 am and the and it was about 45 minutes away. That morning went like clockwork. My sister and I got dressed, loaded up the car, and got some coffee and breakfast. When it was time to go I picked E up from the crib (he was just starting to stir), quickly changed his diaper, put a coat on him, and carried him directly to the car. He was somewhat awake but still quite drowsy for the car ride. This was my plan, the more tired he was, the less likely he was to realize he was hungry and we were way off our routine.
We got to the clinic and checked in and were taken to a room with another little boy. Thankfully, we were later moved to our own room, which was great. The rooms had recliners, not hospital beds, which I think is preferable for a daytime visit. It also made it seem more like a place to hang out, than a doctor’s office, which was emotionally helpful. The chairs each had their own TV and all of necessary hospital accouterments (blood pressure cuffs, IV stands, gasses, etc.). We met the nurse that we was assigned to us for the day and the attending allergist, whom we had never met before. The nurse took E’s vitals. She had some difficulty getting the blood pressure, which increased my blood pressure a bit, but everyone was so great and E was such a trooper that it wasn’t too bad.
Next we had to wait for the IV Team. The clinic’s protocol is that all FPIES patients get an IV prior to the challenge. This is because severe FPIES reactions sometimes result in dehydration that requires quickly administering IV fluids. During a reaction everyone is rushed and stressed and the IV is harder to place. It is also harder to place when blood pressure is low or the patient is dehydrated, which could occur fairly quickly during a severe reaction. So they place the IV just in case. Because of E’s age (he was only 15 months at the time), they called the IV Team, who are more experienced because their only job is placing IVs, they do it all day, every day. This sounded like a great plan but it took the team a while to get to the room, and the challenge couldn’t start until they got there. While we were waiting for the team, his nurse strapped warm packs to both of E’s arms, which helps to make the veins more accessible. At some point it occurred to me that he hadn’t had anything to eat or drink yet and I got him to drink a little water. He was so brave. He was obviously confused but took it all in stride.
While we were waiting for the IV team the attending allergist asked some questions about E’s history. I was familiar with the reputation of this allergist as he had been practicing in the health system for quite a while and I was looking forward to hearing another expert’s opinions on E’s symptoms and history. Within minutes it was quite clear to me that he had a lot experience dealing with food allergies and had some definite opinions about how they should be treated. I was impressed that he took a thorough history and didn’t rely only on E’s medical chart for information. However, his questions started to seem a little like an interrogation. He wanted to know how many days E had consumed soy and how much each day. He was not pleased that I wasn’t able to answer these questions with certainty. Remember, he tried the soy formula when we first started to realize there was a problem, at that point it didn’t even occur to us that everything E ingested had to be treated like a controlled experiment, we were just trying to feed our son. The doctor also made it clear that he felt that E was too young for a challenge and that it was too soon after his last exposure to conduct a challenge (it had been about a year).
Did I mention that this was already an incredibly stressful day? I was so nervous and the doctor was not helping. I had already psyched myself up for the challenge and I was so afraid that after all this he was going to cancel the challenge. My sister later informed me that she thought I might cry. Instead, I took a deep breath and explained to the doctor that I was quite familiar with how to do a controlled study and understood the impacts of confounds. I again told him why I didn’t do a controlled food trial for soy a year ago, months before anyone even acknowledged we were dealing with a food allergy and when I didn’t even know what FPIES was. For good measure, I also mentioned that I was Ph.D. candidate. Interestingly he slightly changed his tone after that. At one point as he was explaining something to me he stopped and said, “Wait, you’re different so let me explain it this way…” I’m not sure what that says about him and how he might treat the average patient, but it worked for me so I gave him brownie points for that one. It allowed me to stop feeling bad about not being a good scientist a year ago and channel all of my energy toward getting my son through this day. And trust me, I needed all the resources I could muster.
When the IV team arrived, E was placed on a stretcher and surrounded by about 5 people who’s only job was to hold him down. I got to be one of these people, which was important to keep him calm, but heartbreaking for me. I can only imagine how scary this was. Of course he got upset and cried through most of the procedure. One of the nurses told him that he was almost all down, so he started crying “all done, all done.” It was so sad. Luckily, the IV was placed fairly easily and quickly. Then it had to be taped up and covered up so he couldn’t play with it. He actually ignored it the rest of the day, it was as though he forgot it was there, which is hard to believe. I’m so lucky to have a flexible little boy!
By now it was after 9 am (we had been at the hospital for almost 2 hours) and we were finally ready to start the challenge. The nurse used a syringe to shoot 10 ml of soy milk directly into E’s mouth. Thankfully, he drank it with no problem and then we waited. After about 20 minutes his vitals were checked. Everything looked good so he was given another 20 ml of soy milk, which is about an ounce total. We did our best to keep him entertained with books, trucks, and TV shows. His vitals were checked every 20 minutes. After about an hour the nurse gave E permission to eat. He hadn’t really complained about not eating (I think he was too confused by the events of the day) but he inhaled his lunch! After lunch it was nap time. I held E in the reclined chair and played the lullabies we always play at nap time to try to get him to fall asleep. It took a little longer than usually but he finally passed out for a little while.
At about 2 hours after the last dose of soy, the doctor checked in. I mentioned that he seemed to be doing ok and was finally sleeping. He used that opportunity to educate me about FPIES. He explained that if a child eats a food for 12 days without a reaction, he will not have a reaction. He also explained that if very strict avoidance was practiced and the child had absolutely no exposure to a food for 18 months then the allergy would be outgrown. I listened intently but recognized that I had never heard such absolutes related to FPIES (or any allergies) and realized that he wasn’t really citing any literature, but his own experience. Of course, I had also formed my own opinions about this doctor and his approach to patients so I decided to take in all the information but not make any changes to our treatment plan. It also made me realize that I wasn’t as up on the literature as I wish I was and made a mental note to start reading more.
About half an hour later E started to stir and the nurse came in to check his vitals. We talked about how everything still looked good and we almost out of the window for his typical reactions. Just as I was about to let out a little sigh of relief, E started to projectile vomit.
I think he vomited two or three times, but in rapid succession. As upsetting as the fail and the vomiting was, it actually wasn’t as bad as the egg or coconut reactions. At this point I kind of knew what to expect and I had a whole team of medical personnel in the room with me as well as my sister. The nurse was amazing. She swooped in and helped me to get E changed and stayed with my sister and E so I could get changed (E and I were both covered in vomit). She said that E couldn’t eat or drink anything for an hour until his stomach had time to settle and we couldn’t use any of the same cups or utensils that we used after he had the soy, just in case there was a trace of soy on it. She continued to carefully check E’s vitals every 20 minutes. We were also told that we had to stay at the clinic for at least two and half hours after the reaction to be sure that he was ok (we had already been there for over 4 hours).
E’s vitals remained stable and, as is typical for his reactions, he recovered faster than I did. Within minutes he was out of the room and roaming the halls of the clinic. Other nurses even commented about how he didn’t seem like he had just failed a challenge. Then it started to hit me. E really did have FPIES and it really could be serious. I guess part of me still didn’t believe that he had FPIES. He had always had his acute reactions at home (or in the car) and I wondered if maybe we made a bigger deal out of them then we should have. I really didn’t believe that he was allergic to soy, either. Now here we are with what the doctor is calling a “very classic FPIES reaction” to soy! And all of the post-reaction protocols regarding cross contact and gut rest and checking the vitals and two and a half hours of observation. This was real! I’m pretty sure I was more shaken by that realization than by the actual reaction.
My general sense of fear and disbelief was not helped by the doctor’s assessment that E’s reaction meant that he must have been exposed to soy over the past year. Now anger was officially added to the mix. I KNOW E had not had soy since his IgE milk allergy diagnosis. I also questioned the doctor because his theory is that you need to avoid the allergen for 18 months to become desensitized and I never claimed to have avoided soy for 18 months. He stuck by his guns, sure that because of the severity of the reaction to such a small dose during the challenge meant that he must have been more regularly exposed. Hmmm. It was now quite clear to me that these “facts” were definitely unsupported theories based on his experiences and gut feelings (and not even consistent). But I asked anyway, “Can exposure to soy oil and soy lecithin sensitize a person to soy?” We had been told that oil and lecithin didn’t contain the proteins and were safe and had not avoided them. He danced around the question, not really providing an answer. I obviously had a lot of research to do.
We eventually got to go home. E was amazing, not really fazed by the craziness of the day. I felt like I was an exhausted mess. On the one hand we were able to clarify that his reactions were indeed FPIES reactions and that he was allergic to soy. On the other hand I felt like I had been put through the ringer. I didn’t know what to make of the information that the allergist had provided and frankly I was angry that he made me feel like a bad mom. I was so grateful that my sister was with me through this crazy day but was definitely missing the strength and second opinions of my husband. While some things were starting to become clearer, I felt even more confused about others. I was questioning our approach to food trials and wondering if we should cancel the upcoming rice challenge. I couldn’t wait to dive into the literature and find some real, empirically supported answers.