Infantreflux.org | FPIES - Infantreflux.org

This topic has 7 replies, 1 voice, and was last updated 19 years, 1 month ago by Anonymous.

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August 11, 2007 at 4:38 pm #40892

Anonymous
Inactive

i am new here, this is my first post. my 10 month old was diagnosed with FPIES, so far she has reacted to rice cereal, oat cereal, gerber puffs, and toast. vomiting and lethargic 2 hours after eating the food. our gastro appointment isn’t until aug 29th. ARE THERE ANY OTHER FPIES MOM’S ON THIS BOARD? Thanks
– Ali mom to Mya FPIES

August 11, 2007 at 5:22 pm #40894

Anonymous
Inactive

Hello & welcome,
I’m so sorry to hear that your little girl has been diagnosed with FPIES & has had so many problems. Try sending a PM to addysmommy. Good luck! I hope you can a solution to help your daughter.

August 11, 2007 at 6:38 pm #40896

Anonymous
Inactive

Hi and Welcome.

Like Heather said I would pm addysmom, they have recently conquered FPIES so she is probably your best resource on this site. Best of Luck. Glad you found us.

August 12, 2007 at 10:14 am #40911

hellbennt
Keymaster

the *only* problem with a PM is that she won’t get it unless she signs on….

so:

I recommend that each of you add the ’email’ preference to your profile- if someone emails you, it’s via a form on the site- the site does not give out the Reciever’s email directly to anyone…what happens is that the person receiving the email does get the Sender’s email address, so that the Receiver can email back. If the Receiver does not want the Sender to have her/his email, then I would suggest then trying to send a PM in response (assuming that the Sender is actively posting/logging on)

Another way to try & reach someone who is not actively posting, is to reply to a post from her/him, hoping that s/he is subscribed to the Forum or thread and receives it in her/his email inbox…

August 15, 2007 at 10:56 pm #41176

Anonymous
Inactive

There are some FPIES moms that regularly post on the MSPI board (http://www.quicktopic.com/23/H/aSxbbAkUULVMX). There is also information about FPIES being gathered by the new non-profit organization that some of the moms have gotten off the ground. It is called PIC for Protein Intolerant Children and the website is http://www.thepicfoundation.org. Hope this helps.

August 16, 2007 at 7:43 pm #41246

hellbennt
Keymaster

eosinophilicgastro list: http://health.groups.yahoo.com/group/eosinophilgastro/

http://health.groups.yahoo.com/group/ACED/ discussions include topics like symptoms (feeding problems, reflux, allergies, failure to thrive, vomiting, diarrhea, etc.), how to get a proper diagnosis, where to find treatment, feeding tubes, going formula only and many, many other issues relating to Eos Disorders. Please join us at our new location and share your advice and struggles.

August 19, 2007 at 7:46 pm #41395

Anonymous
Inactive

hi **waves**

my daughter has been diagnosed with fpies !! she is 7 months old and also has protien losing enteropathy !! would love to chat with you .. !! im in australia .. and on msn would love to chat with you !!!

August 23, 2007 at 11:08 am #41540

Anonymous
Inactive

Hi! This is my first time logging on in awhile as we are trying to sell our house and buy another and its been crazy around here! Please let me know if you have any questions. Addy has overcome FPIES and now is only milk protein intolerant and cannot tolerate any plant based milks (soy, almond, hemp, rice, etc). Feel free to pm me with any questions. I have it set up to receive emails if I get a pm even if I do not log on. I wish you the best of luck at your appt.
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