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Reply by Murphy

Growing slows down a lot at that age - loosing weight I cannot speak too however. My oldest wore that same size clothes for two years at...

Reply by Murphy

We orders ours through Amazon and sent us an email about the recall. We got lucky and none of our three cases in reserve were effected.

Reply by Murphy

My oldest has had that symptom, the frothy he only got when he drank pool water...he never did that again! My youngest has never had a...

Reply by Jess

Hmmm . . . thinking back to 7 months old- when we were first diagnosed. My son first reacted very badly to rice, sweet potatoes, and...

Reply by Emily

Hi Courtney, I'd be happy to talk. Email me if you'd like -- emily.a.ochs@gmail.com , and we can try to connect.

Reply by Murphy

Does your child have any safe foods? Don’t feel the need to go too fast make sure you have baseline for your child. Both my boys have...

Reply by MarkLaBoss

Thank you all for your reply. It's taking me a little while to get back to you because both of my kiddos have been sick since December...

Reply by Orangefox

We tried for both my FPIES kids to get formula covered by insurance. They are both breastfed but we tried supplimenting with formula...

Reply by Haley P

My sons Elecare Jr. is covered by insurance. Our GI submitted a nutrition order to a medical supply company and the medical supply...

Reply by MarkLaBoss

Hi Chris, Sorry to hear about your boy and welcome to the club. My son Marcus will be 4 in April and still complains once or twice a...

Reply by Chris

Hello, Jessica and Mark My son has been seeing Wayne Shreffler at MassGen since he was diagnosed in 2013. I’ve been very pleased. That...

Reply by Murphy

I was going to mention that too. Just be careful because all probiotics are not creates equal and they can contain inactive ingredients...

Reply by C-R

Another thing to incorporate is probiotic. That may help repopulate their gut with good bacteria. It is not only found in yogurts, but...

Reply by FPIESMOMD

Yes, culturelle is milk, soy and gluten free. At least the kids one is but I believe the adult one is as well. I put him on it myself. I...

Reply by MK

Hi, How wonderful that your son outgrew his FPIES! Thank you for the recommendation regarding the dr.! We will definitely follow up and...
MK

Reply by Murphy

Hi. I have a two boys about the ages of your girls both with FPIES. It sounds to me like your oldest is reacting to milk and soy but her...

Reply by MK

Hi! Hoping that your son has outgrown his FPIES. My son is now 26 years old. He still has FPIES to milk. Since he hasn’t had a food...
MK

Reply by Jess

Halloween: We "plant" safe treats with the neighbors we know- quinoa cheerios and pure, homemade maple syrup candy. Then, we go Trick or...

Reply by Jess

Hi, Good luck with food trialing! My 3-year-old son has FPIES (no luck with growing out of it yet- we just failed a retrial). He also...

Reply by John Saltzgiver

Are you still in Dallas area? My 7mo daughter was just diagnosed with FPIES and we are looking for others in the area?

Reply by FPIESinMI

Hi there, i am so glad your baby is doing well with her weight gain, you are going strong with breastfeeding, and that you have figured...

Reply by SG

Thanks so much Jess for your prompt responses as always. It is really scary that kids can fail a food even after a year. I guess I...

Reply by Jess

Hi, Good luck to you as you navigate this journey. I can only offer advice based on our situation: 1. We relied mostly on breastmilk at...

Reply by SG

I am new to FPIES. My baby is 7.5 months old and we had an appointment with the Pediatric Gastroenterologist last week. He said that my...

Reply by Jess

My son vomited Elecare Jr. The doctors said it couldn't possibly fail- but it did! I went back to breastfeeding for awhile. He is now...
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