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

[Dimunznmygrill]

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

[MsJenMackey]

Awwwww he is a super cute baby!! :3

[deeweezie]

@MsJenMackey Thank you. :]

[melaniejanie]

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?

[deeweezie]

@melaniejanie 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?

[reemarie22]

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

[deeweezie]

@reemarie22 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?

[appaloneya]

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

[candyapple857]

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

[deeweezie]

@candyapple857 Jack is almost 6 and still reacting the same, it's tough! How are things with you?

[fpiesdad]

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

[timon924]

Poor lil' sweetie.

[smgalvan04]

Wow this had me in tears :'(

[havens64728]

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!

[deeweezie]

@havens64728 He has FPIES and is a happy, healthy 5 and 1/2 year old who cannot eat soy, dairy or gluten.

[monjanse]

was he unconchious?

[deeweezie]

@monjanse Yes. His body was in shock.

[stephutech]

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 :(

[MOMMY22609]

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"

[obnursebecky]

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.

[blueyesx3]

I am very sorry that you have had such a hard time with FPIES. I have a 7 year old with FPIES, it started at birth (milk, soy & beef FPIES diagnosed at 2 1/2). We had been to many allergist that said we needed a gastro guy. Came across Mount Sinai food allergy institute. We finally got some answers. The good news is she out grew beef & soy(at 5yrs old). Still dealing with milk, it does get easier..read all labels milk & soy have so many different names got info from FAAN. GOOD LUCK!

[MOMMY22609]

@obnursebecky 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.

[MOMMY22609]

@obnursebecky - 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!

[MrStudiotan]

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.

[MOMMY22609]

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!

[LittleFrostyGirl]

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

[cupcakecrzy]

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.

[RabekaJo]

I have stomache cramps and well ya know squirts and swelling of the tongue...glad I don't puke when I eat soy products....poor baby boy :-( I hope you find a diet that works...its hard with an allergy to find what you can eat cause you have to hunt for it yourself...you have lists of what you cant eat out there which isn't much help...Im stuck eating mac and cheese cause I get so discouraged trying to find stuff without soy...and this poor baby has more than soy to worry about :-(

[deeweezie]

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.

[RabekaJo]

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

[yahssis]

what type of food induced such a horrid reaction?

[deeweezie]

soy. :[

[normal12008]

My 17 year old son still has Milk Protein Induced Enterocolitis Syndrome.  He was formally diagnosed at 9 months old. He is tested every two years now (in hospital) under the supervision and care of a pediatric allergist and nurses. He is hooked up (before being given milk) to an IV just in case he needs fluids and/or steroids.

[deeweezie]

Wow, 17 and still hasn't outgrown it. Sorry to hear. We have had plenty of controlled tests now. This is a video of our Ped. trying to prove us wrong. She did not believe the reaction and was saying that his vomiting was tantrum induced. At this point I had been trying to get him help for 8 months already. We were diagnosed at National Jewish in Denver about 3 months later and this ped. closed her practice.

[ronireid]

Poor little thing! Such a brave boy - My son has food allergies too, but not that severe --God Bless You & Good Luck -- I could hardly watch the whole video -- I'm sorry ! But informative for others who don't understand....

[Mom2Schman]

Poor sweetie :(. We suspect our son, 8 months old, may have FPIES.  We had projective vomiting after trying rice and had to call 911 after we trie sweet potato (he ate maybe 1/2 tsp). He vomited until he was dry heaving and then became ashen and lethargic. Of course paramedics looked at me like I was crazy (he perked up some by the time they came) and Pediatrician said "are you sure it wasn't a virus?" We're off to see an allergist in a week.

[deeweezie]

Good luck at the allergist. If you need support, please visit my blog, we have a support group for parent of kids with FPIES. It is a small personal group, we give each other a shoulder to lean on. Thanks for your comment. Go with your gut and do what's necessary for your baby to be healthy.

[lenmum4]

I get it too! My son who is 2 and 10 months also has FPIES which triggers a life threatening condition called ileo-ileo intucusseption (small bowel intucusseption). Like the FPIES isn't enough! The hardest thing about this condition because it is non-ig mediated it mimics everything, therefore it is can be very hard to get a diagnosis and get someone to believe you. Your video is brilliant and a very accurate depiction of this horrid food intolerance! Good luck with your beautiful child.

[deeweezie]

Jack's FPIES has also triggered intucusseption, I wonder if others have experienced this effect.

[jencha08]

Great but sad video. Hits home for someone like me whose son also has FPIES. He almost died at 10 weeks. Doctors didn't even want to think that simple formula could have caused my son to go into shock and become almost lifeless. This video made me very upset, for me it's a look into the future. My son has some testing at the allergist in one week! He is almost 1. We are still hoping it's only SPIES. He's doing good, on alimentum now, after not gaining on just bm. Good luck.

[crewlla]

I feel very sorry for your son. As a child I was also allergic to milk as I got older it went away. just reasently it came back with a vengence. I am also allergic to beef. It took one month to diagnose it and I had to do it myself cause the doctors didnt even know. It starts with a sore tummy throw up tiredness and most of the time loose bowles. its like the milk and beef just cretals in the tummy. I have to drink soya milk maybe that will help your son. Thank you for your video.

[etube28]

My daughter was recently diagnosed with FPIES. Just to address some of the other comments, the oral food challenge (OFC) is the "gold standard" diagnostic test. However, there is a correct way to perform a series of OFCs. Standard skin prick testing and blood tests are not useful in the diagnosis of FPIES. Recently, a group at Children's Hospital of Philadelphia is developing a new test called "patch testing" to screen for potential negative food reactions that may eventually replace the OFC.

[deeweezie]

Thank you for your comment. We are looking forward to "patch testing". We will be heading to Denver in May and hopefully we will be utilizing this amazing advance in medicine.

[glejball]

my son also has FPIES. His reaction is to cows milk. This is a horrific disorder. My son was diagnosed at 4 months of age and has been on a strict dairy free diet since then. We had him challenged in a hospital at the age of 2 and he failed the test (one of the worst days of my life!) He is now 3 and we are waiting until he is at least 5 to have him challenged again. My heart goes out to you and your beautiful son. I understand your frustration and wish you the best of luck.

[deeweezie]

Thank you for your comment. It is emotionally and physically exhausting for everyone involved in the testing. I am thankful for medical advances that should make the process less of a traumatic event. Good luck to you and your little guy.

[cactusproductions]

aaaaaaaw it is sad docs who think there smarter than everyone else hee seem srry wen he said uho after he threw up poor baby

[livelovelaughbig]

Thank you for posting this video! My son is five years old and I truly cried when I watched this. So familiar and it just breaks my heart that you had a Dr. who didn't listen for such a long time and even made him go through a dangerous reaction. My Lil man has asthma and is allergic to peanuts& tree nuts,eggs,dairy products especially milk,berries,bleach. I have worried since he was a baby.

[deeweezie]

Good luck to you and hopefully all of the medical advances in allergies will help in your future.

[2peas1pods]

poor child.. Can I ask why he was being sick on the floor like that???? just things about the spread of bacteria as a bowl or bucket would me more hygienic ?

[deeweezie]

The doctor left us and went to care for patients... when she checked on us and saw that he had vomited, she said that he should just keep it on the floor and the janitor would come in the morning. If there was a bucket or a bowl available I would have taken it, but she wanted to "test" the validity of the claim of our sons illness and so she put us in the empty "ill" waiting room in front of the office. The whole situation was horrible, her practice was closed 2 weeks later.

[ice2pay]

Have you tried NAET treatment??

[deeweezie]

no, we have not. our doctors have not mentioned this, I am not sure if it is used with f.p.i.e.s.

[kearahbaby]

my 14 month old daughter Adrienne has FPIES too... this video made me cry - we are not challenging milk or soy until age 3.

[deeweezie]

I feel for you. We were not "challenging" soy here... we were risking a reaction at the doctors office so that the pediatricians would believe our story and take action. We had been trying to tell doctors for over a year and no one would listen. We knew that it would be risky and sad, but worth his improvement.

It is smart to wait on the challenging. We are not doing any until the age of 3.

[bohdel]

I am so sorry that the poor boy had to go through this. (And you, too!)

My son has thrown up the last two times we gave him Sweet Potato, and, in looking for info about possible allergies to such, I came across FPIES. His reaction is so similar. Do you know how it is normally determined to be FPIES instead of an allergy?

[deeweezie]

Sorry to hear that. FPIES is nonIGE mediated, so a typical allergy test will show negative. If you would like more info, check out my blog, which has some great info and we even have a support group. Good luck to you!

-mandy