Your opinion about my daughter: FPIES or simple cow milk allergy ?

Hello,

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.

Anne

Original Post

It does sound more FPIES than anything.  At this point I've come to believe the sensitivities are different for each of these kids (ours is dairy, wheat, casin, gelatin, soy, and bug bites) which generally present in the ways you describe as well as skin rash, ear infection, and outbreaks.  We had all the tests ran including ciliac and allergy panel with negative results.  One thing is definite though, if she has these things, it is not a good situation.

As for the food thing, i have been able to turn to almond milk and yogurt, coconut oil and flour, as well as some other stuff.  It takes hours of reading labels in the store and I do my best to avoid anything that has "natural flavoring" as an ingredient.

Hi Anne,

My 18 month old son had classic FPIES reactions (major vomiting episodes sometimes leading to shock) to multiple foods- like rice, sweet potatoes, squash, banana, etc.  Therefore, we got the correct diagnosis fairly quickly.

BUT, he also has reactions to food that do not include vomiting/shock symptoms.  This particularly confuses our doctors.  Cow's milk caused a minor fever, red dot rash on both legs, minor diarrhea (no blood), and severe abdominal pain (hour long episodes).  There was never any vomiting.  Unfortunately, it took a few reactions for me to catch on to the fact it was a cow's milk  issue due to the fact there was no vomiting.  He was ill for about a week after I removed the food and then recovered well.  Soy milk caused minor vomiting/diarrhea.

So, I'm beginning to believe that FPIES can manifest in a variety of symptoms depending on many factors.  Although there are many that may disagree with me . . .

Although it is a tough battle, I just feel blessed that my little one is healthy and happy- we never had any "faliure to thrive" issues.  I just take it one day at a time and keep getting up the courage to yet another food trial.

-Jess

Franny posted:

It does sound more FPIES than anything.  At this point I've come to believe the sensitivities are different for each of these kids (ours is dairy, wheat, casin, gelatin, soy, and bug bites) which generally present in the ways you describe as well as skin rash, ear infection, and outbreaks.  We had all the tests ran including ciliac and allergy panel with negative results.  One thing is definite though, if she has these things, it is not a good situation.

As for the food thing, i have been able to turn to almond milk and yogurt, coconut oil and flour, as well as some other stuff.  It takes hours of reading labels in the store and I do my best to avoid anything that has "natural flavoring" as an ingredient.

Hello,

thanks for your answer. I cook with almond and rice milk too and I take a lot of time to read the labels  too !

Jess posted:

Hi Anne,

My 18 month old son had classic FPIES reactions (major vomiting episodes sometimes leading to shock) to multiple foods- like rice, sweet potatoes, squash, banana, etc.  Therefore, we got the correct diagnosis fairly quickly.

BUT, he also has reactions to food that do not include vomiting/shock symptoms.  This particularly confuses our doctors.  Cow's milk caused a minor fever, red dot rash on both legs, minor diarrhea (no blood), and severe abdominal pain (hour long episodes).  There was never any vomiting.  Unfortunately, it took a few reactions for me to catch on to the fact it was a cow's milk  issue due to the fact there was no vomiting.  He was ill for about a week after I removed the food and then recovered well.  Soy milk caused minor vomiting/diarrhea.

So, I'm beginning to believe that FPIES can manifest in a variety of symptoms depending on many factors.  Although there are many that may disagree with me . . .

Although it is a tough battle, I just feel blessed that my little one is healthy and happy- we never had any "faliure to thrive" issues.  I just take it one day at a time and keep getting up the courage to yet another food trial.

-Jess

Thank you for your answer. Food trials are very stressfull !

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