F.P.I.E.S. Not your typical FOOD ALLERGY Video

The pediatricians at the local hospital and our pediatrician did not believe that our child was reacting to food. They all said he had a virus. After over 8 months of these episodes, I finally fed him soy at his pediatricians office and filmed his reaction so that we could get some help.

Read Jack's story at www.justjackingaround.blogspot.com

Jack suffers from F.P.I.E.S.(food protien induced enterocolitis syndrome).

He can not eat dairy, gluten, or soy.

This video is long, but we are sharing it for educational purposes.

My 6 mo old was ...
My 6 mo old was just diagnosed... I'm so grateful we? didn't have to go through this in a Dr office to get help..

Our godson was ...
Our godson was today diagnosed with fpies...after many trips to Emergency being told he had a virus? and that he had an over reactive mother....they say Luca will grow out of it by about 5-6 years of age, possibly even 3...I hope Jack is better now.

:( this is terrible ...
:( this is terrible I am so sorry.. :( I couldn't even? imagine...

He has FPIES and is ...
He has FPIES and is a happy, healthy 5 and 1/2 year old who cannot eat? soy, dairy or gluten.

Yes.? His body was ...
Yes.? His body was in shock.

Jack is almost 6 ...
Jack is almost 6 and still reacting the same, it's tough! How are things with you??

Hi, sorry I am just ...
Hi, sorry I am just coming on here, I? never do. Anyway, have you received a diagnosis for your son? Have you found a good support?

He had a bottle of ...
He had a bottle of soy formula, it was maybe his? 2nd time, and it came on really strong. It doesn't commonly come on the 1st few times. Sorry to just get back to you, I never come on here. Have you found good support?

Thank you. :]?
Thank you. :]?

Awwwww he is? a ...
Awwwww he is? a super cute baby!! :3

Thanks for posting ...
Thanks for posting this video. I cried when watching it as my 5 month old son has had two such episodes in our attempts to wean him using baby rice. We thought it was a tummy bug at first. The second time we did a? google search and have figured out that it is most likely FPIES. His reaction was almost exactly the same as Jackie's. The thing we can't work out though is that he was doing well on the rice for the first 6 times. On the 7th and 8th it all went wrong. How quickly did Jack's come on?

Thank you for ...
Thank you for posting this video, it is hard to watch and I do feel very bad for little jack. My son is going through this we believe. He eats rice cereal and breastmilk and with in 2 hours he begins to vomit, feel fussy, tired everything I see in your video. I think we? will try to get a doctors diagnoses now. Thank you

aww? poor baby... ...
aww? poor baby... thats what happeneds to me if i eat carrots

My son also suffers ...
My son also suffers from this disorder, it is very frustrating and hurtful to watch because my son is 2? and they say by the age of 3 they out grow it, but he'll be 3 in April, and I'm not seeing any changes. Its so sad because he gets hungry, and cries cause he wants food, and you just cant give it to him, its so hurtful, I've even caught him sneaking things, and i have to hurry up and take it before he swallows it, because you don't know what his reaction is going to be, he could have a stomac

Wow, you really ...
Wow, you really love your? little Jack. Hopefully, with hearing about FPIES, pediatricians and parents can start identifying it earlier or even design ways to introduce certain foods to children more cautiously. -Dayce

Poor lil'? sweetie.
Poor lil'? sweetie.

Wow this? had me in ...
Wow this? had me in tears :'(

Omg that poor kid. ...
Omg that poor kid. I'm not a doctor but that can be more serious? than it seems. As many things that that could be, do some homework and find the possiblilites. If you already have a diagnosis, seriously....as obveous as it sounds take care of him!

was he? unconchious?
was he? unconchious?

oh my god i feel ...
oh my god i feel bad for him :( thats a lot? of throwing up for a little body and thats just not good seeing him so skinny like that in the end :(

our daughter was ...
our daughter was diagnosed in december at the age of 8 months at the mayo clinic in rochester, mn. since the diagnosis we havent had a single episode! right now our "almost" 13 month old can have soy formula, sweet potatos, apple sauce, and blueberries. she shouldnt be able to have the potatos or soy but doesnt have a reaction to them so she is allowed to have them for now. her numbers arer off showin an infection in her body so we are worried that she could have a "build up? reaction"

- our doctor told ...
- our doctor told us that we were over worried, over barring first time parents and? there was nothing wrong with our daughter. her episodes were 10 times worse than what you see jack having on here and all of the docs told us it was the flu and to take our unresponsive daughter home. the last episode she had was in november and during that episode she vomited more than 50 times in less than an hour and quit breathing. at times i felt like i WAS crazy but i refused to give up!

Our daughter who ...
Our daughter who was diagnosed in december at the mayo clinic with FPIES didnt have a reaction towords her rice cereal at all but the doctors said? rice is a big trigger food when it comes to children with fpies. only advice i can give anyone when it comes to having your child diagnosed with fpies is dont give up, keep fighting til you can find a doctor who is willing to work with you! it took us 6 months to get a diagnosis but it was worth it.

Very familiar after ...
Very familiar after feeding our 5 month old rice cereal. The rice cereal has soy oil-lecithin in it. Have you had problems with this? I was told it wasn't a protein and shouldn't be the problem. I don't know what to try feeding him at this point. Our Pediatrician thinks I'm? crazy. I think it's FPIES. This is my 3rd child and I'm an RN. I don't feel like I'm overreacting.

Hi, Horribly ...
Hi, Horribly familiar! My three year old has FPIES with milk but normally in to a full crash within an hour and a half. A very near call the first time as unaware and, unfortunately, 4 Emergency visits through accidental? ingestion since. I saw the comment on your previous paediatrition and have been through the same including a row with an Emergency Physician who told me she was just suffering a minor fit! Luckily her records were at the same hospital and he eventually conceded. Infuriating.

I AM TRYING? TO ...
I AM TRYING? TO FIND YOUR BLOG WITH MORE INFO ON FPIES..... and am not having any luck. i know what you are going through with your son and i am sorry to see him in that state because i know it all too well myself. my 10 month old was just diagnosed with it after 6 months of misdiagnosis, i am looking for more info on fpies and hopefully a list of foods she CAN have instead of all of the ones she cant. hopefully you are the person who can help me! :) thanks!

I'm so thankful to ...
I'm so thankful to god that I don't have any allergies and this video is so? sad:(

breaks my heart to ...
breaks my heart to watch this. I'm having a heck of a time getting doctor's to diagnose my 11 month old son with FPIES. I KNOW that's what is wrong but they keep saying virus. It follows the normal 2 hour pattern, though, and it's only after certain solids. He never vomits after breastmilk. We just spent 4 days in the hospital with a? bad reaction.

how did you find ...
how did you find the diet? did it list the things he CAN eat? rather than what he? CANT? Thats what I need...a list of things I CAN eat...so I can just hop in my car go to the store find the items and buy them...depression and lack of motivation is whats holding me back from searching for other things to eat than mac and cheese...thanks for any insite

We have found a ...
We have found a great diet that works, Jack? is really happy with his everyday diet. It is hard to prepare foods for him, but there is a lot more available than you would think.