Boy Can't Eat - Eosinophilic Esophagitis Awareness - NBC Richmond

[3era8]

Finally someone gave it a name! my son had been suffering with this since he was 17 years old. Now he's 25 and done every test there is and seen many specialists and all diagnosed it as ACID REFLUX when he told them it was NOT. Some doctors even insulted him by saying it's in your head. He's always irritated and have discomfort on his chest, at one point in time we thought he was having heart attack. All they can do is prescribe him with Acid reflux medications.

[carabeanieify]

I got diagnosed a little while ago, they put me on Flovent and it has helped SO much! but this disease pretty much sucks. very much.

[AstronomerAri]

Im 13 and Ive been diagnosed with this for a little over a year. My allergy is oats (i had patch test. If you have a child with this and you dont know what cause it, take them to an allergist and have patch testing done. Its horrible but it tells you what they are allergic to!) and it is hard. I take flovent abd Zantac. Im going in for more allergy testing because of difficulty breathing.

[msdoleta]

My daughter is 33 and has been officially diagnosed for several years. It has been three months since she has had solid food this go round. This story was greatly encouraging to her and for that I am truly grateful. Never give up the fight!

[JennHarris29]

Our official results will be here Friday but our endoscopy yesterday showed my son most likely has EE

[14RacingRocks]

My son age 12 was diagnosed a week ago. Is on Flovent and prilosec. Not sure where we are going from here. He hurts all the time and sometimes refuses to eat. What complicates things is he is also a type 1 diabetic.

[CommanderCoward]

Yeah, now he's probably got to take a corticosteroid which have horrible side affects.

[bdog167]

Also this case can not get you killed obviosly, the food is stuck past ur air vent it just hurts like hell. -_-

[bdog167]

I also have this im 12, im on a diet in which i cant eat the main 8 allergie food groups, on the 17th im getting one group back in lets hope im not allergic to alot, already alerrgic to apples, peaches, and tree nuts. D:

[anmoney93]

I have Eosinophilic Esophagitis too. Im 18, and I only learned that I had it, about 3 years ago. But I've had trouble eating all my life, but my regular family doctor, and parents thought I wasn't chewing up my food good enough. Im on the liquid diet thing now, and I can only eat 5 foods, because Im allergic to 11 foods.(so far)

[lovetheNorml]

so is he just drinking the pulmicourt?? instead of the nebulizer?

my heart goes out to everyone of you and i hope you all find some kind of relief

[birdlydish124]

i'm 20 yrs old. just got diagnosed. not nearly as serious as this kid, it just kinda sucks for me. glad to see I'm at least still on the lucky side. i just wish more was known about how to treat it. even if the answer is food allergies, more would be helpful for sure. GET TO IT SCIENCE!

[EosMom]

This is like hearing my son's story! :) Pulmicort slurry really worked for Timmy! :)



[SaberNineNine]

These are complex conditions and they can't be solved with simple answers, such as a few prescriptions or simple diet changes.

My son was diagnosed with EGE two years ago.

Since June of last year, we are fortunate enough to no longer be concerned with his pain, other effects, nor medication that do not work.

This has a major relationship to nutritional issues, so many medical practices fail to adapt to this kind of problem.

Our success is described at eosinophilic blogspot.

[thorncrown325]

I have it, it isnt fun, I have upper abdominal pain, difficulty swallowing, and sometimes regurgitation, It has gotten worse and it really makes life difficult

[birdlydish124]

@thorncrown325, i just got diagnosed and i'm curious about how ee has developed in other people. how old are you? when did you first start to notice symptoms?

[thorncrown325]

@birdlydish124 I am 14 Years old, I first started to notice the symptoms in first grade, when I choked on and regurgitated corn chips, they started treatment by infusions once a month, it helped until my body came too adjusted to the medicine and it stopped working. It wasn't treated for a year and it was horrible. I couldn't eat, sleep, or have fun. I was then treated by pulmicourt (?) and splenda. Although I am in pain everyday, I don't have to eat because of my gastronomy tube

[bradycook27]

i have this too, get meats, especially chicken caught in my throat

[BreakingShambhala]

@bradycook27 That's what happened to me when they found out I have it as well.

[asiefik]

ok so 3 months ago i left a dumb comment and i appologize for it. i deleted it. but still ee sucks. my poor brothers has it so i got mad.

[connornchase]

if it gets worse i can take these asthma steroids and eat the foods im allergic to. but they dont want to give them to me yet because they want to see what foods i am really allergic to and which ones i can have first.

[connornchase]

hopefully the doctor said i can grow out of some of my allergies but dairy is the worst and will stay with me forever. i am now seeing if i can eat corn and rice and so far im ok so i will be able to eat them.

[connornchase]

i have this disease. im allergic to dairy,soy,corn,all grains, and wheat. I get the worst stomach pains. i have to get tested every 2 months mostly and im going back in a month for a test. im only 14

[COCOpebblez100]

u have this, my life is hell and none of my freidns believe i really have a problem

[kaylarae52]

my brother has this. i most likely do. the doctors have done scopes, ultrasounds and so one. on me and my brother. its terrible. all we need is prayer and hopefully one day god can cure us.

[wendyvainity]

just found out today I have this condition, I am a slightly overweight 48yo female who has been accused of scoffing down and not chewing my food so it gets stuck in my gullet, no-one believed I ate small pieces, yesterday I couldn't dislodge food with a fizzy drink and had to have an endoscopsy and they found the lining of my throat had this exzema like condition, I get external exzema too, I have been prescribed the asthma puffer swallowing treatment, hope it works.

[mistyable1]

I was diagnosed with EE when I was 15-16 years of age. I too, had to endure procedure after procedure, prick after prick, and x-rays after x-rays. My first diagnosis was when I had an allergy test done because wheat seemed to set off the symptoms. The test, however, revealed nothing. The doctor was curious. I then went to see a gastrointerologist where the doctor performed an upper GI called an endoscopic procedure and found a 75 percent narrowing of the esophagus.

[Abrocrombie2012]

I have this

[wangwee3]

Welcome to my world. Im 14 and I found out about this 2 years ago.

[bharfarar]

Where can I find out more about EE? After contracting Valley Fever years ago (not knowing that I had VF), I began noticing an inflammed esophagus and later trouble swallowing. And years after that, after getting my VF diagnosed, I found by coincidence that after taking anti-histamines, my swallowing issues subsided. The swallowing issues are also accompanied by cough, and GERD-like symptoms. Any experts' advice to me?

[KaitlynMcAvoy]

My 4 year-old cousin has this. I support

[barb1543]

My son is 11 and has this. The doctor tried to get us to take medication but that did not seem like something I wanted for my son for life. We did elimination diet and it is working so far. He can't eat "whatever he wants" but he will not be dependent on medication for life either. If you have a child diagnosed with EE do research don't just put your kids on medications when you don't know the long term effects.

[tkg2727]

@barb1543

I am glad your son is able to work with an elimination diet. Between age 2 & 6 we tried every available option for Justin. Elimination diet didn't help. The only thing that worked was formula only. He then trialed foods one at a time for a year. There is no food he can tolerate. This medication was our last option. It is either this or no food at all for him.We did not go into this decision lightly.I do research continually waiting for another solution. For now,this is right for him.

[0Mellennium0]

@barb1543

Hey, I'm a 17 year old kid who wasnt diagnosed with EE about 2 years ago. I suffered all my life with it, along with acid reflux, which has fed into anxiety- related swallowing difficulty. I use Flovent, an inhaler used to reduce the inflammation. The doctors say it has been effectively working, and my esophogus is back to a normal size due to an endoscopy. I'm curious, what is the particular elimination diet? Because i've had extensive food allergy testing and nothing showed.

[kristenLeighC]

I was diagnosed with EE last April 2009 and I am a 27 yr old female. Ive had digestive issues all my life but it wasent until I had my daughter that they went out of control and I had all the symptoms of EE and the Upper GI confirmed it. I stay close to the allgerist to get the foods tested and I stay away from the ones I cannot eat. I also take the steroid inhaler and prilosec. Hope the boys conditions continues to improve!

[mistyable1]

@kristenLeighC

I have the same problem. Sadly, the disorder will last for a lifetime, depending on the eosyniphilic count. Also, I take Flovent which is not a sterodial inhaler; it is mainly used for asthmatic patients. Also, I use Nexium, which is the strongest acid reducer and I recommend these medications to you. Side effects may include diarreah and headaches (common symptoms.)

[DestroyAndVoid18]

There are many symptoms. I may have this. But I do not puke. I have acid reflux, heartburn, food gets stuck in my throat, and at one point, I was showing symptoms of Dysphagia (trouble swallowing).

[morganwtk]

Aww i feel bad for hi.. i have esophagitis and acid reflux which is a terrible combination...

[sixyellowroses]

I am so happy for Justin. Tammy (Mom) should receive the "Mother of the Year" award for never giving up and searching for the answer. Justin can now be like all the other kids in school and enjoy more foods. DEB Y.