Kara was a happy, plump breastfed baby that seemed to throw us for loops from the beginning. She had icky, oozing eczema from the time she was only a few weeks old and tended to spit up quite often, in large quantities. She is our second child and our first had a lot of spit up as well, so I never thought too much about it. We played around with rice cereal between five and six months and had to stop two different times because of extreme increases in her eczema. Once we were given the ok to try again, a little over six months, our dreadful, life changing day occurred. Exactly two and a half hours after eating the cereal, my baby started vomiting. It was like a volcano had erupted in the way that it just kept coming out. We were at a local event and I was with some other mom’s and I began to get really worried! After this went on for quite a while, Kara really seemed to be out of it. We rushed her up to the ER and by the time the doctor was in to see us, she had perked up and was smiling. Our diagnosis? Probably gastroenteritis but to be safe, wait two weeks and then try the cereal again. Two weeks later we tried again. We fed the girls, gave them baths and put them to bed. Sure enough, two and a half hours later we heard this horrible screaming coming from Kara’s bedroom. We ran up to find her going through the exact same vomiting episode. Again, it lasted and lasted. We opted to not bring her to the ER and instead kept her at home. The next day we saw her family doctor. He agreed that this was a very strange reaction and that it’s almost unheard of for people to be allergic to rice, but in any case, lets stay away and try moving to oatmeal.
Oatmeal was soon tried one evening at supper. We put Kara to bed, and looking back I don’t think we even thought anything of it, didn’t expect anything to happen. Between two and a half to three hours after she had eaten her dinner we heard that same, familiar screaming. Running up there again, we found Kara absolutely soaked in vomit. Her hair, her blankets, mattress, even crib bumper. It was so sour smelling, like one hundred times worse than normal vomit would smell. Not quite sure what to think we put her in our bed after cleaning her up and kept a close eye on her through the night. I was able to get Kara in to see a different physician the next day. We explained what happened and that this was no coincidence anymore. In the office, a simple search of vomiting rice cereal was done and Food Protein Induced Enterocolitis Syndrome came up. The doctor had never heard of it but as we both read about it, we agreed that this is exactly what Kara had gone through. “We need to get you guys in to see GI right away.” is what was said.
At 8 months old we saw our first GI doctor. I explained Kara’s reaction and how we had reason to believe she had FPIES since we’d only tried rice and oat and what had happened was exactly how it’s explained. He literally looked at us, said “FPIES babies are failing to thrive, your child is notfailing to thrive.” We left that appointment with more questions, but thinking he’s the specialist, so he must be right. I kept thinking to myself, I’m not a moron, I’m not going to keep giving my baby food when she’s going to become violently ill from it. Of course she’s not failing to thrive, she nurses constantly…we just couldn’t figure out why he had dismissed what was going on as not being FPIES. I was actually scolded for not having food in her diet, despite telling him that we were simply terrified to feed her.
We struggled for the next four months, slowly trying to get food into Kara. We had no direction, I just nursed her and gave food to her here and there. We had some problems with food aversion and had the process started for her to begin treatment at the feeding clinic. It was the most frustrating time for us. When Kara was one year old, she saw her first allergist where she was immediately diagnosed. We went on the elimination diet, starting all over with foods and food trials and it was at that point that Kara was put on Neocate, an elemental formula after having problems with both dairy and soy. We had ups and downs, passes and fails. In September of 2010, we finally saw a GI doctor who seemed to be somewhat on board with us. Despite her not diagnosing FPIES, her care plan for Kara is what we needed. In October of 2010 Kara was scoped to rule out various other GI problems. Her scope came back normal, however she ended up having a scary cardiac reaction to something shortly after the procedure that she was admitted for. We ended up having to see a cardiologist after that was over with and it was determined that Kara’s heart is fine but she is just an extremely sensitive child. The stress that the relatively simple procedure put on her body caused her to go into tachycardia and it lasted for 24 hours after the procedure. This is another scary symptom that Kara still has to this day with her reactions.
In the winter of 2011, Kara got her first ear infection at a little over a year and a half old. This was the beginning of months of illness. She had ear tubes put in and tonsils and adenoids removed in June. She was admitted for a few days after this procedure due to her previous reaction during a procedure and because she’s so prone to dehydration. The surgery has helped with the ear infections but she’s still had other issues going on. We were sent to see an immunologist to further look into the illnesses. It was found that Kara has really low IgA levels; which explains why she manages to get sick all the time and crashes immediately. She barely has any immune system!
We have had a rough last few months. Kara has begun to fail foods that we previously thought were safe for her, her eczema is wide-spread and we can’t seem to get it cleared up and she’s had daily tummy pain followed by icky, explosive diapers. She has been hospitalized three times this summer, once with her surgery, once with gastroenteritis (fairly certain it was reaction-related) and once with a full blown FPIES reaction to something that we will probably never know. We have limited her diet from what used to be about sixteen safe foods, down to three to see if we can get her back to baseline again. This is of course, causing a significant increase in the amount of Neocate she is drinking again. We are in the process of getting her in at The Cincinnati Center for Eosinophilic Disorders at her specialist’s recommendations.
Despite Kara’s health, being in and out of the hospital, she is a happy, typical two year old little girl. She loves trying to keep up with big sister, Brenna, and helping Dad, Brian, out in the garage, trying to keep herself out of trouble. She is a mommy’s girl at heart. Kara brings absolute joy to our lives and is one amazing little girl.
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Page published: June 19, 2012. Copyright © 2012,The FPIES Foundation