Activity

Reply by McKayla

Rice and corn are both fine for her.we have not tried quinoa She's had eggs also.. the only reaction she's ever had was to the...

Reply by Jess

Do you know what grains are safe for her yet? My 3-year-old son has FPIES to all grains (rice, oats, corn, never tried wheat), so we use...

Reply by MarkLaBoss

Hi Emily, I know we typed before, but don't go to CT. We are so close to Boston and BCH is a center that truly understands FPIES. Dr.

Reply by Jess

Hi, I agree with everything Murphy said. My 3-year-old son is not unlike her children- He has 10 safe foods, and he has always thrived.

Reply by Emily

Thanks, Mark and Julia! I look forward to hearing more about your experience. Sounds like our boys are close in age, and it would be...

Reply by MarkLaBoss

Hi Emily! Marcus (who is diagonsed) is 3 and Thomas who isn't diagnosed but has a few of the symptoms will be 1 on Saturday. Because our...

Reply by Emily

We are in Warwick. How old is your son? My youngest (who has not been officially diagnosed fpies, but it is starting to be discussed) is...

Reply by Emily

Thank you; did your son have vomiting with the breastmilk or just diarrhea? I am still hanging on hope that it is something milder than...

Reply by Bstewart83

We have a similar story. Our older daughter was FPIES to rice. Our son reacted through breast milk and is so much better on elecare.

Reply by Murphy

My only option! But I appreciate that. Their doctors have consistently said “I don’t know how to explain that that are thriving and...

Reply by Murphy

Meticulous journaling of every ingredient (so no eating out lol) and reaction, trial and error and time. It was a long slow process. I...

Reply by Emily

Murphy, how were you able to determine what foods they were reacting to through your breastmilk?

Reply by Murphy

What information are you looking for? I have two boys with FPIES 5 and 2. My oldest has 14 safes and my youngest 12 though he does eat...

Reply by Franny

Have you tried changing the bath soap and / or laundry soap and / or cleaning supplies? We had ridiculous eczema flare ups with food and...

Reply by Murphy

My five year old has over 70 fails and only 13 safes. He was stuck at 12 for three years. If you don’t like what you are hearing from...

Reply by Jess

Sadly, welcome to our world. There are quite a few of us on this forum with toddlers that lose safe foods and large lists of fails (not...

Reply by Ewa

thank you for the information. Our previous reactions are only vomiting, can the ring appear without diarrhea? my son has a slightly red...

Reply by Murphy

The ring known in medical circles as the FPIES ring is literally just a bright red ring right around the anus. Some think initially that...

Reply by Ewa

Thank you for the quick reply. My son, on both salmon and egg, reacts on the 4th try, which is why our testing scheme includes 7 days of...

Reply by Murphy

Are you waiting long enough to make sure new things are really safe? Acute reactions become easy to spot once you know what you are...

Reply by Ewa

I just wonder if I should go back to breastfeeding alone, or stick with those 20 safe products and breastfeed, and try to put aside new...

Reply by Ewa

thanks Murphy for the answer, I'm a bit lost, because here on the forum I read different stories and I just do not know what to do. we...

Reply by Murphy

Is he at baseline with the 20 safe products? If he is at baseline there is no reason to cut them, baseline is baseline and baseline is...

Reply by Jess

Hi Ewa, Try not overthink everything- one day at a time! : ) Try to find a good medical professional to help work out the details-...

Reply by Izabela

Hi Ewa, I am from Poland and I have a son with FPIES. I diagnosed his condition after he had a severe reaction to baby rice ( and later...

Reply by Ewa

thank you very much Jess and Fpiesgraduate. Your messages gave me a lot of hope. Jess, you're right, I blame myself for this situation.

Reply by Fpiesgraduate

My daughter is 5 now and has no symptoms. She was also about 7-8 months when we learned about fpies and got a diagnosis based on her...

Reply by Jess

Hi Mark, Hope your kiddo is doing better this spring! Mine is- I find winter is rough for kiddos with FPIES, since viruses really mess...

Reply by Jess

Hi, I think most FPIES cases do fit the medical articles from what I heard from my doctors- they've never seen a case like ours. This...

Reply by MelissaJB

I am from Southern Michigan. My son just turned a year old and has Fpies. Diagnosed at Domino Farms U of M allegist. Did not do an IgE...

Reply by Ewa

thank you very much Jass. Your answers helped me a lot. I must admit that when I diagnosed my son and read some medical articles, I...

Reply by Jess

Hi, That is a lot of questions. : ) Every case of FPIES seems really individualized, so I can only answer from my perspective. My son is...

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Reply by MarkLaBoss

Hi Jessica, Marcus sees a team over in the EGID Clinic on the main campus of Boston Children's. His doctor is Dr. Ngo and his allergist...

Reply by Jessica

Hi! We were referred to Boston children's and i was not all that happy with the doctor we saw, as every question I asked he said to come...

Reply by FPIESinMI

Hi there, We are not too far from you and see someone in Ann Arbor. U of M allergy has some great FPIES docs who also have nutritionist...

Reply by MarkLaBoss

Sorry to hear about your struggles Melissa. FPIES is so rare that alot of pediatricians don't know about it. We have received some crazy...

Reply by Jess

Well, I'm one state too far from you (WI). Hopefully, someone from Michigan sees your post and can give you a personal reference. This...

Reply by Emmy

Hi Murphy, If it turns out he has MCAS don't stress too hard (like I did), its apparently a lot more common than they originally thought...

Reply by MarkLaBoss

Also Murphy mentioned histamines in food. The doctor today mention that ground turkey may have more histamines than regular turkey meat...

Reply by MarkLaBoss

Hi Emmy et al., To my knowledge MCAS (mast cell activation syndrome) & MCAD (mast cell activation disorder) are the same or at least...

Reply by Murphy

The only process food he eats is gorilla munch and simply Tostitos plus chick pea and chickpea/red lentil pasta. He eats strawberries...

Reply by Ameador1

We totally do beans! White and black beans - never canned, I cook them. I usually soak them for one or two days first and then cook them...

Reply by Murphy

I wish we could explore a low histamine diet but my oldest only has 12 foods that are safe and without beans he would have no protein...
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