Comments on: FPIES- Food Protein-Induced Enterocolitis Syndrome

By: fleickly

fleickly — Sat, 06 Nov 2010 00:06:18 +0000

That is great news and I will share the link.
FEL

By: Fallon Schultz

Fallon Schultz — Sun, 31 Oct 2010 02:14:34 +0000

I just wanted to share that I have established a fund with the Children’s Hospital of Philadelphia for FPIES, called the FPIES United Family Fund. The fund was established to raise awareness and to develop research/ research protocols for FPIES. Our future goals are to develop supportive and educational services as well. Please, if you are interested, visit the site and take a look.. http://giving.chop.edu/goto/FPIESFUND
Thank you!

By: fleickly

fleickly — Sat, 30 Oct 2010 16:01:57 +0000

Thank you for the story on your child.

By: fleickly

fleickly — Sat, 30 Oct 2010 16:00:35 +0000

Thank you for your posting.

By: Lisa

Lisa — Sat, 30 Oct 2010 04:44:44 +0000

Hi, thanks for this article! I am so grateful for any awareness we can bring to this alarming disease.

My son is another strange FPIES case for you to expand your knowledge on.

He was exclusively breastfed until 19 months. As an infant he seemed to have stomach problems–lots of painful crying and trouble sleeping at night–but never vomit or diarrhea. We had attributed it to gas.

He started eating solids at 6 months, and although he never threw up at this point, he was a very picky eater and his stomach pains continued.

When I weaned him at 19 months, the vomiting started later that month. By this point he was eating a small variety of foods and it took us another nine months before we even figured out that food was the reason for his vomiting. These nine months were filled with bouts of severe vomit and lethargy, the episodes getting consecutively worse over time. We couldn’t figure it out, and no docs could, either. Awful, awful time!

Finally, through food journaling, we eliminated soy, oats, and rice (among a host of other foods) from his diet. He was 2 1/2 years old at this point. Six months later we finally discovered FPIES on the internet and diagnosed our son on our own. Since then we have gotten a confirmation from an FPIES-savvy doctor.

Our son will be 4 years old next week. After following a strict diet the last year and being roughly episode free, his month he accidentally consumed a minuscule amount of soy and had a three-day long reaction, indicating that he is, if anything, MORE sensitive as he gets older. We pray that he will eventually outgrow it someday. :*(

By: Heather

Heather — Wed, 27 Oct 2010 16:27:42 +0000

Thank you for your interest, willingness to learn and heart to help. My son who is 2 1/2 was only somewhat diagnosed (possible FPIES) two weeks prior to his second birthday. Education and awareness is the first step we need. My son has FPIES to milk, soy, rice, oats, barley, hemp, onion, tomatoes, peppers, apples. Then there are varity of foods we are avoiding/haven’t tried yet. Thanks for the advocacy. Please continue. Its encouraging to the parents of these kids who would rather spend their free time doing something else then researching/networking/figuring out the puzzle. One day I will be able to just be my kids’ mom.
Thanks again!!! Heather

By: fleickly

fleickly — Wed, 13 Oct 2010 21:19:57 +0000

Thank you for your story. Other than the home page on this site, these postings on FPIES are the most frequently accessed pages. There is significant interest in this condition.
As much I wish that I was an investigator in this area, I can at least make a contribution in the area of awareness. Sharing experiences, perspectives, and articles that may not be available to all may help with that awareness.
Thanks for the comments,
FEL

By: Relieved Mom

Relieved Mom — Wed, 13 Oct 2010 18:50:33 +0000

Thank you for sharing what you’ve learned about FPIES.
My son who is now 7 years old has dramatic reactions to even the tiniest consumption of rice, rice flour, anything with rice in it (like those cupcake sprinkles). Rice is the most common ingredient in baby foods and “health” foods. And so it was difficult when my son was only 6 months old to find safe foods for him to eat. We didn’t’ know what was causing it but we were able to see the link between rice and his violent vomiting and diarrhea. We did not have an diagnosis at the time and for three years we were terrified to see his reactions become more scary. We heard of this diagnosis just last year. It would have been such a relief to know more when we were going through the reaction to rice. we very worriedly would give him a grain of rice every 6 months and fearfully see if his reactions were better or worse. Since the guess was a food allergy.
Your published information helps bring this rarely heard of diagnosis to something that will help other families with the same issue.
Thank you.

By: fleickly

fleickly — Mon, 04 Oct 2010 13:12:50 +0000

I have not seen anything on the autoimmune connection. It is from observations like this that help focus on what may be going on.
Thanks for the comment,
FEL

By: Fallon Schultz

Fallon Schultz — Mon, 20 Sep 2010 02:14:36 +0000

Hello Doc,
Thank you for your reply. It is so helpful to FPIES parents to have someone so accessible. Yes, I totally agree with you that treatment protocols are needed. My husband and I are currently working on working with CHOP to establish these protocols. the research is also desperately needed! Thank you for being such an advocate for us all..