Monday, January 11, 2010

Progress!

When Jacky was first diagnosed, I googled FPIES and Food Protein Induced Enterocolitis Syndrome.

NOTHING CAME UP!!!

Nothing at all.
I was afraid and I felt totally alone.
So I posted the video of him reacting to soy on YouTube.
This video is a record of myself taking Jack to his doctor to give him soy and video tape his reaction. No one believed me, our pediatrician and all of the doctors that had dealt with Jack did not think that he was suffering from more than a flu. The pediatrician in this video believed that Jack's episodes were tantrum related. I had to prove her wrong, I had to prove the world wrong, I owed it to Jack.
Now it has had 6,095 views.

The video has been used in American and European medical research and conferences.

Still feeling alone in the battle, I began a blog, which has helped us meet other parents of kids with FPIES.

Then came the support group. 58 families with children with FPIES visit and share their experiences, recipes, regrets, hope and friendship.

We have helped each other find doctors, made helpful phone calls to one another, organized play-dates with each other, supported each other during hospital stays, etc...

I want to thank all of you!

Jack wants to thank all of you!!!

(by the way, google FPIES now, it's amazing!)

3 comments:

tayylorw said...

Hi Jack's mom!!
I need your help. I just tried to logon to the Let's Talk FPIES group but I'm not at home right now and am having trouble finding it. I'm desperately trying to get a confirmed FPIES diagnosis for my 16 month old. Her regular pedi doesn't take it seriously. I took her to a pediatric gastro today in Tennessee and the lady didn't even know what FPIES was!! She wanted to put my daughter through all kinds of ridiculous tests, including a scope. What doctor did you see that gave you your diagnosis? I'll drive anywhere to see someone who will actually take me seriously! Email me at awaretaylor@gmail.com Thank you SO much! Ashlie

Anonymous said...

Hi i seen your blog and loved it! But i was wondering if you could help me. I have a 8 month old girl (neveya) she has had many problems since birth with vomiting and screaming fits, poor weight gain. She only weighs 12lb 13oz and hasn't gained a oz in over a month. She has every thing from a NJ tube to MANY EDg's (scopes) they have even done Botox to open the bottom of her stomach so everything would drain out faster. But none of this has worked! The dietitian told us about Fpies. It all makes falls in to place. But my problem is i need to find a Dr around the WI, MN area. My insurance wont cover for us to go to NY or Penn. Do you know of anyone in this area.





Thank you,

Renee O Donnell
reneemyarrington@yahoo.com

Lisa said...

Thank you for all your work in raising FPIES awareness! I am sorry you once felt so alone. I did too, but thanks to your video on UTube and your blog, I don't feel so alone anymore. I also just found the FPIES Facebook page and there are 312 members! I think it's a small but rising epidemic, and awareness will only grow. Thanks again, you are awesome!!