×

CaringBridge Is Funded by People Like You

Make a donation to CaringBridge

Honor Neveya with a tax-deductible contribution to CaringBridge today.

Click here to make your donation.

My Story

2 year old neveya has Food Protein Induced Enterocolitis Syndrome (FPIES). A rare condition that makes it impossible for her to eat most food with out having a severe reaction or shock. Visit www.iaffpe.org



Our little Veya has FPIES (food protein induced enterocolitis syndrome.

FPIES is a non-IgE mediated immune reaction in the gastrointestinal system to one or more specific foods, commonly characterized by profuse vomiting and diarrhea. FPIES is presumed to be cell mediated. Poor growth may occur with continual ingestion. Upon removing the problem food(s), all FPIES symptoms subside.  The most common FPIES triggers are cow's milk (dairy) and soy. However, any food can cause an FPIES reaction, even those not commonly considered allergens, such as rice, oat and barley.

Veya's Reaction so far is to all foods. And if a food is ingested she starts with vomiting and diarrhea. Then comes fever, heart rate goes way up to 190's and then she has trouble breathing. Visit www.iaffpe.org for more info

Feed

Renee O'Donnell posted a new journal entry.

Its been a long time I know! But we have been doing pretty well. Neveya has only had 2 reactions all summer!!! This is big news for us! We have been going to Milwaukee for ... Read more

Renee O'Donnell posted a new journal entry.

Its been a long time I know! But we have been doing pretty well. Neveya has only had 2 reactions all summer!!! This is big news for us! We have been going to Milwaukee for ... Read more

Renee O'Donnell posted a new journal entry, "Day one done!".

We finished with the motility testing. But still have the cath in her belly until the morning when they put in the GJ tube. We were told not to play with to much because ... Read more

Renee O'Donnell posted a new journal entry, "Motility testing".

We arrived bright and early this morning after no sleep last night.  I guess neveya didn't like the cot that the Ronald McDonald house gave her because she didn't stop ... Read more

Lori Teigen signed Neveya's Guestbook.

thank you so much for the updated. I hope you find the answers you have been looking for. I will be praying for you.   Lori Read more

Carolyn Schmelzer signed Neveya's Guestbook.

So glad to hear your are in Milwaukee safe and that hopefully Veya will get what she needs figured out.  I feel so bad for her and you all for having to deal with all of ... Read more

Renee O'Donnell posted a new journal entry, "Milwaukee".

Happy 4th of July!! Well the time has come as many of you know we have been waiting almost a year to get Veya into Children's Hospital of Milwaukee. We drove down here ... Read more

Renee O'Donnell posted a new journal entry, "Happy Holidays!".

Short entry this time.  Just a update. The Good NEWS!! Neveya gained weight!! This is really the biggest weight gain we have ever seen and it seems that we are back on ... Read more

Renee O'Donnell posted a new journal entry.

All is well!We are home after a very long day but over all everything went very well. She was able to have her GJ tube replaced with out any problems. And they did with ... Read more

Carolyn Schmelzer signed Neveya's Guestbook.

TWO!! Wow..Happy Birthday Veya!  You are one strong little girl to go through all you do and have your pretty smile on your face as often as you do.  So glad things went ... Read more

Show more recent activity