The story of louise
Joseph was born in October 2012 by C-section and was breast fed from birth. He was given antibiotics for the first 3 months of his life for a suspected kidney problem. From about 4 weeks old he started vomiting large amounts up to 6 times a day and his skin was awful. He was very slow to gain weight and dropped from 65th percentile at birth to just above the 2nd at 4 months. When i took him to the GP to say i was concerned about the vomiting and slow growth, the GP said he probably had reflux but was not in pain so no medication was needed. His skin was very sore, dry and cracked and he was diagnosed with eczema at 12 weeks. We saw a dermatologist who did some blood tests which showed up an egg allergy but nothing else.
We started solids at 6 months and his vomiting got a lot worse and he developed a constant rash on his face and neck. His sleep was awful and he would often screaming for long periods pulling his legs up.
At 7 months we gave him chicken, he was grumpy and vomited a bit the first three times but this was not unusual and i didn’t link it to the chicken. Two weeks later he had his first acute reaction. Two hours after eating some chicken he started to vomit in his cot, vomiting many times until he brought up bile, afterwards he was pale disorientated and really sleepy, I thought it was a tummy bug. A week later chicken again, the same thing and he went really blue and stayed that way for days. It took a further episode for me to realise it was chicken, i googled ‘chicken allergy’ and FPIES came up, i was sure this was what my son had. I went to my gp told him i thought it was FPIES and he actually laughed at me, but did refer us to an allergist, but there was a long wait.
By 8 months I suspected Joseph had a problem with many foods, each new food i gave caused him to vomit everywhere two hours later, but the picture was clouded by me breastfeeding so we started aptamil pepti formula.
At 10 months Joe was a mess, daily frequent vomiting, horrible rash and eczema and screaming most nights. So i made the big decision to stop all food (giving just formula) and his symptoms disappeared completely! My son did not have reflux, colic or infantile eczema he had food allergies.
Three weeks later we saw the allergist who said it was not FPIES as Joseph was not ‘sick enough’. He put Joe on 3 months gut rest and we were only allowed to feed him rice and beef which we believed were safe from previous trials. The dietitian changed Joe over to neocate lcp formula which was fine, she also gave us neocate spoon but it made him vomit. We continued for 3 months on a diet of neocate, rice and beef. He was so much happier and healthier. He started sleeping through the night and gained weight rapidly.
We went back to the consultant in October and he said he didn’t understand Josephs’ reaction to chicken as his test was negative. I mentioned FPIES again and he didn’t know what it was! This is the same doctor who told me 3 months before Joseph didn’t have FPIES. He conceded he was unfamiliar with it and then had us wait in the waiting area whilst he did some reading about FPIES on the computer.
When we returned he said he had done some reading and said it could be FPIES. We discussed food introductions and he said he just didn’t know, but we should not try any previously reacted to foods until after he is 2, maybe longer. He booked us in 6 months for a revisit and said to contact him if we have problems.
After that appointment we decided to go private and Joseph was finally diagnosed with acute FPIES to chicken and chronic FPIES/ non-ige allergies to many other foods. During the last 5 months he has been on a diet of neocate, rice and beef. He has had no rashes, vomiting or reflux and sleeps through the night. At 14 months old we are now starting the long process or trialing foods, 1 per week to try and add to Joseph’s diet. It is becoming more clear that Joseph is not a textbook case of FPIES, but is FPIES + numerous IgE and Non IgE allergies. We are currently awaiting a gastroenterology appointment where Joseph will undergo a procedure called endoscopy to see if he has EoE (eosinophilic Eosophagitis) alongside his FPIES.
We are now 2 months into our food trials and I must say it is emotionally, mentally and due to many sleepless night, physically exhausting. But for all the failures and the distress (and copious amounts of vomit) that fails bring, each pass is a huge victory which we celebrate. It is unfortunate that we cannot afford to continue the private care as we have no medical insurance and i have been forced to give up work to look after my son. The allergy consultant we were due to see at the tertiary referral centre left before our appointment and so we are once again muddling through on our own with little support. A story which is unfortunately familiar to many FPIES families.