looking for other older children for my daughter to connect with

Hello everyone

My daughter is 13 and has had FPIES since she was very small, but we have only just now realised what her problem has been. She has FPIES to dairy, gluten and some kinds of fruit juice. She has a lot of trouble with avoiding these foods.  My husband does not want to have a house free of her triggers, so we have bread and icecream in the house. She finds it hard to avoid these, naturally and tends to help herself even if I hide them. Her reactions are severe and involve all night vomiting and dizziness, and lethargy for the following couple of days. I am looking for ideas to help her with dealing with the temptation - which she has to deal with outside our house anyway - and also for other teens who might like to correspond with my daughter by email to provide mutual support.

Thanks heaps!

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Hi! My daughter Sarah is 11 and is always excited to write to other kids living with FPIES. We also have a very active online group on Facebook for kids and their families. We have close to 900 members from all over the world. Our kids range in age from a few months old to 17 yrs old. You're welcome to join.

https://www.facebook.com/groups/sarahsfpiesclubhouse/

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I realize this is an older post but, I'm glad to see we're not alone.  This Wednesday my 8 year old daughter was diagnosed with FPIES, primarily dairy.   As much of a relief as it is to have as diagnosis, it is still scary.  It's also been difficult to find information on school aged children with FPIES.  I had not heard of FPIES prior to Wednesday, so I'm madly digging for information.  Thank you for sharing, every little bit helps at this moment.

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