In medicine there is a saying, “when you hear hoofbeats, think of a horse not a zebra.” It’s a reminder to consider the most common and probable diagnosis before jumping to the conclusion that there is something rare and exotic going on. Sometimes when I look back at the first couple months of 2013 I become angry about the recommendations that were made and the symptoms that were missed. But, FPIES is a zebra, a rare disease that isn’t the first diagnosis to be considered. We were so busy assuming that we were hearing horses that we didn’t think to look for a zebra.
The end of 2012 was rough. On top of the constant fountain of spit-up coming from our son, none of us were sleeping. E had never been a good sleeper but December 2012 was especially bad. I have always been one of those people who really needs 9 hours of sleep to function. On some nights I was lucky to get 4 fragmented hours. And naps weren’t any better. By four months, E was napping for about 35 minutes at a time three or four times a day.
It was not lost on me that just before I got pregnant I had done a rotation in a sleep clinic and had successfully treated insomnia in several adults. I thought I knew a lot about sleep. I was wrong. So I started reading. In my sleepless state I read at least 3 books and countless articles about how to get a baby to fall and stay asleep. We attempted sleep training several times between 3 and 7 months. Each time we started with controlled crying, letting him cry for a set period of time and then going in to reassure him. It was awful. After I left the room, I would hold my breath, watch him on the video monitor, and fight back my own tears. He was so worked up. And then he would vomit. I had heard of this, babies getting so upset they they vomitted. This seemed different, but doesn’t it always when it’s your baby? He was so very upset and the vomit was forceful, an eruption that was clearly visible on the monitor. When the timer went off, after what felt like years (but was really only 5-10 minutes), my husband or I rushed in and tried to console him. He was always covered in vomit. We would move him to a different, dry location in the crib, wipe his sad little face, and leave for another 5-10 minutes. I think the worst part was that after he finally fell asleep he would start crying in his sleep. We would go into him but he was still asleep, just screaming. It was so sad. We told ourselves that the sleep training was for his own good and our only chance of sleep. But it didn’t feel right. After a couple of nights we would give up. And then, as the desperation set in, we would try it again. The psychologist in me said that consistency is key. But the mommy in me said that something was wrong, he was sick, he was uncomfortable, and I couldn’t leave him to cry in his vomit. So we didn’t sleep and I continued to worry.
By the end of the year we were looking forward to a change. E’s diagnosis with an IgE allergy to milk was scary – to think that exposure to dairy products could be fatal to our baby – but we finally felt like we were getting somewhere. All we had to do was avoid milk and our son would start to feel better. The allergist also suggested we avoid soy. He hadn’t gotten better during the couple of days that he was on the soy formula, so it was possible that he had a soy allergy despite the negative test results. I was weaning and he was transitioning to Neocate, a formula that is hypoallergenic. We trained all of our family members in his emergency action plan and how to use the epipen. Things were bound to get better soon.
We waited. I think we expected the spit-up fountain to just turn off one day. It didn’t. We were still worried, still stressed, still really really tired. So I bought a book. That’s what I do. I read. I think. I research until I can understand and wrap my head around what is going on. I started reading “Understanding and Managing Your Child’s Food Allergies” By Scott H. Sicherer, MD, a pediatric allergist who is well respected in the field (I later learned he is an expert in FPIES, but that wasn’t on my radar at the time).
I spent all of the time and little energy I had learning about food allergies. I was most interested in IgE allergies, after all that was E’s diagnosis. But I’m a bit nuts and I have some sort of a compulsion that requires me to read an entire book. I can’t read select parts that seem interesting or skip parts that are irrelevant to me. I have to at least skim the whole book. You never know when you might need that other information, right? So I read about the symptoms of IgE allergies – the eczema, the stomachaches, the vomiting. It all made sense and fit in with his diagnosis. But I also read about non-IgE allergies. I read about FPIES and thought it sounded like E’s symptoms, vomiting was a symptom here too, so was poor growth. I didn’t think he had diarrhea (but who knows – baby poop is weird, right?). And thank God he never tuned blue or went limp. I decided it wasn’t a good fit, besides the doctors never mentioned that as a possibility. I was grateful that we weren’t dealing with a disease that is hard to diagnose has dramatic symptoms. I continued to skim until I got back to the “relevant” parts of the book. When I finished the book I felt better informed, but was still covered in vomit.
A rare moment of sleep.
We had a follow-up appointment with the allergist in mid-January. By that time E was only drinking Neocate but we were still seeing mass amounts of spit-up. The allergist felt confident in her diagnosis of milk allergy and was not sure why he was still spitting up. I cried. I vividly remember holding E in my arms and staring out the office window to hide my tears. I didn’t know what to do. Why was this not working? What was wrong? How could she not know? What were we going to do? When would I sleep again? I felt so defeated and helpless.
I was only slightly comforted by the fact that the allergist had a plan. She wanted him to see a GI doctor and recommended thickening his formula with rice or oats to try to get it to stay down. She also ordered an atopy patch test to get more information about the milk allergy. She explained how the test worked and what we needed to do but didn’t give us her rationale for the test. And I didn’t ask. I was too upset. She was about to go on maternity leave so we planned to see someone else in the group to go over the patch test results, we didn’t want to wait until she returned to work to get answers.
I think it was in the car on the way home when I realized that I had read about the patch test, in the non-IgE section of Dr. Sicherer’s book. I felt confused, maybe I was mistaken. Then I thought back to the red flags I noticed in the FPIES section and wondered if the allergist was also thinking that it might be non-IgE. She hadn’t mentioned it but maybe it was something she was thinking? I reread those sections. The patch test was definitely a test for non-IgE allergies, but it wasn’t widely used, was still considered experimental, and controversial. I felt like I didn’t really understand the plan but I always believe in collecting as much data as possible. So I made the appointment.
While we were waiting for E’s patch test and GI visits, I focused on what I hoped would be our solution – thickening his formula. I had heard of other parents having success with this technique and I was willing to try anything. Some quick internet research suggested that rice can cause constipation and gas. I decided to thicken his formula with oats, trying to avoid adding any more GI symptoms to this poor kid. Thickening the formula was a mess. The formula was too thick for E to suck through the nipples we had. I bought nipples designed specifically for thickened formula, but the holes in those were huge and the poor kid couldn’t keep up with the flow. On top of that, making bottles became more complicated. Our kitchen started to look like a chem lab with all of the powders, measuring spoons, and scales. Don’t get me wrong – it would have been totally worth it if it had made a difference. But it didn’t. There was no change. The high volume of spit-up continued, only now it was thicker.
Next was the GI appointment. We were so hopeful that we would learn something, that they would finally tell us what we needed to do. That they would have the answers for which we were so desperate. That E would stop vomiting all the time, feel better, and sleep.
The visit was horrible! The nurse practitioner that we saw was like the “what not to do” example in an empathy course. She was terrible at listening and spent the entire appointment telling us stories of other children that spit up a lot. I guess she was trying to normalize our experience, but she came off as rude and uncaring and totally unhelpful. The doctor was a little more empathic and spent some time educating us. He explained that because the upper GI in November was normal and he was already on a hypoallergenic formula, the spit up probably wasn’t caused by anything physiological and probably wasn’t related to his allergy. Once again he was diagnosed as a “happy spitter.” By now those words made every muscle in my body tense up and my skin crawl. No one understood that E was not happy. Happy babies don’t cry in their sleep. He explained that the spit-up would likely stop once E became more vertical and his esophageal muscles strengthened, which should happen around 12-13 months. The GI doctor didn’t think thickening his formula was necessary but didn’t think it would hurt and also wanted us to start to wean him off of the omeprazole. He thought we just needed to wait it out. I cried. E was almost 6 months old and I wasn’t sure that I could do this for another 6 months.
The atopy patch test was in mid-February. E and I went to the office on Friday afternoon and the patches were applied. I was under the impression that he was just getting tested for dairy. However, the order had been for dairy, soy, oat, rice, and chicken. I thought that was odd but I’m always happy to have more data so I didn’t mind. I’m not sure when it started to click but I some point I remembered reading that these 5 foods were the top FPIES allergens. The nurse almost didn’t test for dairy because he had already tested positive in the scratch test. Luckily, by this point in the process I had started to find my voice and insisted that she follow the doctor’s orders. Our allergist was on maternity leave and couldn’t be consulted so all of the patches were applied. But we were told to keep an eye on the patches and remove them sooner if we noticed a major reaction. To make her point, she told me that sometimes children react so badly that their backs look burned. Great. Something else to worry about.
This is E’s back with the patches applied.
The test consisted of taping small, shallow cups containing the allergen to his back. The cups were left in place for 48 hours. We removed them and bathed E on Sunday afternoon and returned to the clinic on Monday for a doctor to read the results. Over the weekend E developed a cold and also had a couple of episodes of projectile vomiting. Those episodes stuck out as different from the usual spit up, so we chalked it up to the cold and the allergist agreed. Thankfully, there weren’t any burn-like reactions, but his skin wasn’t clear either. The test showed a reaction for milk, a smaller reaction for soy, oats, and chicken and an “equivocal” reaction for rice. Our un-trained eyes didn’t see much differences between the reactions, but we agreed that there seemed to be reactions to all of the patches. The results for milk, and even soy, were not really surprising. But you can imagine how upset we were to learn that the oats we had been adding to his hypoallergenic formula were a possible allergen! The doctor wasn’t concerned, she was focused on the fact that he didn’t get worse when we added oats. We were focused on the fact that he didn’t get better. She suggested we try switching to rice for a week or so and then back to oat to see if there was a change.
As far as we were concerned, there had been a small reaction to rice and we weren’t interested in repeating our oat mistake. However, I also knew that the best way to diagnose an allergy was with real exposure to the allergen. Allergy tests aren’t perfect and there are false positives (and false negatives) all the time. I had also knew that the test was not perfect, or even widely accepted so it was probably not the best thing to base all of our decisions on. So we gave it a try. Nothing changed. We even went back to oat, for about 5 days. No change. In a last ditch effort, we tried barley. Still spitting up. A lot.
By the middle of March 2013 my husband and I finally took control of the situation. I had been reading a lot and was pretty sure we were looking at an non-IgE allergy, possibly FPIES. The data supported this and many of the symptoms were consistent. He was still spitting up soooo much, still seemed uncomfortable, still having trouble sleeping. I knew he was still sick. We weren’t making progress by only avoiding dairy and soy. We needed to do more. My gut screamed at me to stop exposing him to grains. I finally listened. We stopped thickening the formula and went back to straight Neocate.
At this point E was almost 7 months old. We had seen 2 different allergists at one of the county’s top children’s hospitals and no one had mentioned non-IgE allergies or FPIES. However, we continued to collect data. I don’t know if our allergist was starting to think it might be FPIES, or if she was trying to rule out FPIES, or if it didn’t even cross her mind. I don’t know what she was thinking because she didn’t tell me. I’m just glad that I am a researcher. Glad that I was able to look at the data and make decisions. I think it was at this point that I decided that on top of the dairy (and maybe soy) allergy, E had non-IgE/FPIES allergies to rice and oats and maybe chicken. I still didn’t totally understand what that meant but we added those foods to our list of allergens to avoid.
We found the zebra. We learned how to take care of the zebra. And E started to get better. Finally.