I am a french mum of a 16 month baby girl, Max. I am very happy to find this forum because my girl is diagnosed of a cow milk, soy, eggs allergy but I think she has FPIES but I'm not sure. FPIES is not well known in France.
I will give you our story (with my bad english) and maybe you can help us.
When Max born, she had difficult to suckle and to take weight and she was very lethargic. At 1 month, she began to have important diarrhea and quickly it appears blood and mucus in the stools. She was only breast-feeding except one time, at one month, I give her a baby bottle of industrial milk for baby and she had vomiting.
When blood appeared in the diarrhea we went to the hospital and they make some analyses and they found nothing so they said it’s a cow milk allergy by my milk so they told me to avoid all milk products, what I did. But it was not really better, they was daily big bloody and mucus diarrhea. I was very worry so I decided to see a gastropediatrician and he made a rectosopy and the intestine was very inflamed. They stayed on their diagnostic but we decided I have to avoid soy, eggs, cow meat also. What I did and after it was better, the diarrhea were less spectacular and I found only sometimes blood but she stayed pallor and not very well. One time I made a mistake and eat a dish with cream and she vomited, had fever and stopped to eat. She became very better whan I stopped the breast feeding at 7 month and she drank a very advanced hydrolysat “Néocate” and nothing with eggs, milk , cow meat or soy in her food.
During this time, hey made some blood analyses but they never find IgE and the skin test were negatives.
At one year, the allergolog and gastropedestrian decided to make an oral challenge of milk, they gave her 18 ml of milk and she developed a hard fever in the afternoon and she vomited the evening (but just a little). And after she had bad stools and she had pallor and she was tired during 4 weeks.
Since this time, she is quite well but it’s difficult to feed her and sometimes she has pallor and blue cerne. Also her body temperature is around 35.5 degree celsius (95.9 Fahreneit) but the doctor say it doesn’t matter (but I think it’s strange!). Sometimes she had fever without other symptoms.
I want to know if it is a FPIES because I read that the protocol is different if there is an acute crisis.
When I read the description of FPIES I see my daughter but her symptom were more diarrhea than emesis whereas emesis seems to be very important in FPIES. And it’s not easy to make her take some weight but she hasn’t failure to thrive.
Thank you to give me your opinions.