Anyone's child have this??

No one here that I am aware of Carla. Why do you ask? It is a suspicion for Curran so I have done some research. I may be able to direct you to some stuff for it if you need it.

Carla,
My son does not...HOWEVER, upon asking my GI about Noah's symptoms (Maggie's Noah) he said that was the first thing that came to mind, although his testings he had had done should have showed that. Now we know that wasn't Noah's case, but I did a little reading up about it after that talk w/the GI and have not since.
Basically, it's when a child is pretty much allergic to the protiens in just about everything. You probably know what it intails if you're asking about it though. :oops:

Thank you Sara and Leigh! Sara--I do know about it, but thanks for input incase I didn't! I was vague on my initial post!!:wink:

Leigh, I would love to be directed in the direction you have gone in with research. I have done some of my own, but always looking for some great sights. The one that seemed great to me was Cincinatti Childrens web page-- guess they are the leading clinic in the country that treats it.

Has Curran ever had a biopsy for it? Chelsea's pediatrician and allergy doctor both suspect it in Chelsea. I do too but am pessimistic that any concrete diagnosis will be found! There have been so many mysteries with her so sometimes I wonder if I make too big of a deal out of it--like read too much into what I call mysteries. But then I look back at everything she has been through and I say no, there is something more.

Our GI here in a sense pushed us aside saying that Chelsea had visceral hypersensitivity and that it is the cause for her uncontrolled reflux, gi pain, and IBS symptoms. It was this kind of "here take this med and dont call me in the morning" kind of thing. It was a "I am not doing anything more for her so just medicate her and dont bug me kind of attitude.

WELL as you know we went to UCLA. Not everything makes sense to Dr Ament. For one her 2nd ph study result was 4 percent--well within normal range, but because she had a lot of pain and problems, the GI here ordered the other fundo against his colleagues opinions. I did what he thought because at the time I was naive to the fact that reflux was not her only problem. We did the fundo, and initially the pain symptoms seemed better but they were short lived and intermixed in with new pains. She went on Nortriptyline and Neurontin and because it helped a lot, they classified her as a visceral hypsersensitivity child. BUT we took the milk protein and soy protein out of her diet at the same time. I saw a HUGE difference and we have had a HUGE improvement ever since. In fact, when I allow her to have something with one of these foods in it, she seems off again--kind of a take back to those old days. The clincher is that this is the first time she has been off all meds since before taking the milk and soy out of her diet and she is doing pretty well for the most part.

There is more I want to tell you but I will have to write it later...my kids are summonzing me!!!:wink:

Carla, we don't have it. We have had the biopsies, if it is any help my Doctor said it is getting more and more common to have these allergies and it is what she initally suspected of Parker. She said most kids who hav eit also have allergies and eczema and asthma.

Hi Rachel,
It does help to know that it is getting more common. Chelsea has allergies, ezcema, and asthma as well. Her allergy doc has his mind made up that it must be this.

Chelsea has been biopsied for it before apparently and it came back negative. But one thing I learned to share with you, is that it is not once negative always negative. It can be positive later. So if you suspect symptoms, it is important to keep on it. The other thing is that depending on who did the biopsies, who read the results, which lab tech did the analysis, etc. it is very easy for there to be a false positive. This has happened pretty frequently around here. I know one family personally, whose son had two fundos, almost died during one of them, and when it was all over she took her son up to UCLA and the doc up there found out he had EE and never needed the fundos in the first place. EE mimics reflux BUT IS NOT REFLUX!

Now...I say apparently she was biopsied. This is because the GI's here do a "custom" set of biopsies whenever they do an endoscopy. Chelsea had three endoscopies here. So supposedly she was biopsied 3 times. But our ped said that doesnt necessarily mean anything--if they weren't specifically looking for an eosinophil count, they can easily miss it. That boy I just described, obviously had flase negatives here. Also, it depends on where they take the biopsies.

So having said all that, we would need to do ANOTHER endoscopy (as if she hasnt been through enough!) to have Dr Ament at UCLA perform the biopsy to find out if she truely has it or not.

We'll see, we haven';t decided anything yet. The only thing we did decide on is to have her allergies retested on Wednesday.

Just wanted to add that Eli has always had high levels of eosinophils but there always always some bigger concern when finding this out that I never pushed any further. I have researched this as well and would not be suprised of E does have this.

Erin,
Can you explain a little more? I dont think I really understand your response. Are you trying to say that they found high levels but never pursued diagnosing him with EE because something else more serious was always an issue at the time? In otherwords, the eosinophil count got pushed aside to deal with more serious things, then never got brought up again?

I know a little boy who has EE. I've talked about him before on here. His parents travel from Northern Ohio down to Cincy on a regular basis for his treatment. He went through **** and back treating GERD when all along it was EE. He still has problems but nothing compared the first 4 yrs of his life in and out of hospitals and numerous procedures.

Maggie was checked and was cleared. For awhile we really thought she had EE.

Sorry! I lost track of this thread. I am not at home right now but will pm you some information that I found regarding it tonight when I get home.

That is exactly what I am saying Carla. We were told this when we found out about his low immune system and it was before surgery was mentioned and I didn't even know what it meant. And, after I read about it on here and started looking into it it sounded like E, we have had two tests that show high levels of eosinophils, out of range. But, there was always something at the time which we were having the tests for that took over my mind and it never got mentioned to them on my part. I know that sounds bad of me but considering all that was happening at that time it is understandable. and, since he has been doing so well and we haven't been in I just haven't gone out of my way about it.

Erin~ EE & low immune system go hand in hand.

edited to add that it's not just EE but all Eosinophilic disorders.

Yep, I remember reading it at the time. With the downward spiral with his emptying and immunity though it just never got brought up. Each time I would go in with a list and it would be on it and they would throw me a blow with something else.

Anyhow, keep me posted on all of this you guys!

We just got diagnosed today, officially. It was initially suspected, but assumed that since she didn't improve much on the neocate, that she still had a big peptic reflux component. It turns out that she still has major eosin. in her stomach and duodenum. They were sort of very general with possible options. Steroids and such. I posted all the stuff in updates in "Some of Em's results came back" or something like that. I am not sure I understand there approach to it, and wonder if we shouldn't be seen somewhere such as Cinci. Children's.

Wow, I will have to go find your update!

Wow. I was just looking for something on EE. I haven't posted in nearly a year, but my 3 year old dd was diagnosed with EE about 2 weeks ago.

Well, if Chelsea has it it may be hard to find out what foods trigger it. She was re-allergy tested yesterday and it showed that she outgrew her allergies to milk and soy! I was very excited--but the only food it showed her to be allergic to still is shrimp and tomatoes! She doesnt really eat tomatoes, other than ketcup--and has never eaten shrimp! So maybe she doesnt have EE. We'll just wait and see. If she starts having chest pain back on cow's milk products then maybe we'll consider a biopsy. She does complain at least once daily that her throat and chest hurts, but she'll say it one minute and the next minute she is running around. I never know with her! The only time I think it would be worth it to biopsy her is if it hurts bad enough for her to actually be crying about it, waking at night for it, not eating well because of it, etc.. Right now she is eating well, sleeping through the night and not crying about whatever discomfort she complains about. How great is this?!

I gave her a little sour cream on her taco last night and she slept all night. So maybe today we'll have a little yogurt!:wink: Keep your fingers crossed that this goes well!!!!

BTW, we finally know what her environmental allergy is-mold. So she is back on zyrtec but it works great.

My Brandon who is 7yrs old has had eosinphills always and we cant get rid of them. We have done all kinds of diets to see if it would help but nothing has for him at this time.

He was scoped a year ago and will be again this summer. He has eosinphils in his esophagus,stomach,and small intestine. He presently is on gastrochrom which is oral intal used to treat the allergic side of the eosinphils.

Brandon has gone through extensive allergy testing for enviormental and food but have not been able to pinpoint the problem. He has been batteling this since he was first dx with reflux as an infant. I do hope that you are able to get some answers.

Melanie

Sara(3.5) was diagnosed about three weeks ago. Her pediatrician finally gave up on her and sent her to a gastro, which was just what we needed. He saw her for her inital appt, and scheduled her endoscopy for two days after. We recieved her biopsy results the following week.

So we have stopped the Zantac and started Prevacid, which is working out great, and Budesonine, which she hates, but takes better than I thought she would.

She goes back on the 24th, when we will probably schedule allergy testing.

I know this thread is a little old, but I suspect EE in my daughter. Is the only cure to avoid the foods that trigger it? I read about some meds you all listed and wondered if it was treated by those. Is there any testing that can be done besides endoscopy? My daughter is a heart patient and they don't like putting her to sleep if they don't have to.

Carla - i see your daughter has an allergy to molds, so do I. I have found that a lot of cheeses will set me off because of the mold in teh enzymes for making it. Can't do blue cheese at all. Cheddar and parmesean are hard on me too. Something to consider if you haven't already.

Chelsea doesnt eat cheese. But thanks for telling me about that, it makes sense. Apparently the only thing to make it inactive is to completely eliminate all foods that trigger it. It is a lifelong change like celiac. Unfortunately, for a lot of kids that means going on neocate or elecare only then adding individual foods one at a time to see what they can tolerate. You have to keep rescoping periodically until the inflammation is gone, especially when trialing different foods. If environmental things trigger it like mold for example, or if the elemental diet is inefficient in healing the inflammation, they swallow doses of inhaled steroids.

There are some different meds, but I dont know much about them yet. Chelsea takes nortrptyline to help with dysphagia in her esophagus so she can swallow without food getting stuck and so she wont retch. It masks the symptoms basically but helps her be much more comfortable and we definitely cannot go without it right now.