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Eosiniphilic Disorders

TCA

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TCA Contributor
TCA
Posted

The lastest peice of the puzzle is that megan may have an eosiniphilic disorder causing her choking and gagging. The GI specialist wants to do a scope to test for it. I think we're finally where we should have been a year ago. Half the drs. say it's too hard on her heart and the ohter half say it would be no issue. I just don't know what to do. If she does have eosiniphils in high numbers the course of treatment would include eliminating the offending foods, but sometime prednizone is needed to speed the healing. Her next open heart surgery is in August and we would love to get the gagging/wretching under control by then so she doesn't have to endure that pain. I just don't know what to do.

Skin testing showed no allergies, but RAST testing showed a moderate allergy to milk and eggs. Her gagging my have improved ever so slightly, but we don't see any real difference. We're just desperate to help her.

Do any of you have experience with EE, EG, or something similar? Do you have any advice? :unsure:

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chrissy Collaborator
chrissy
Posted

i knew someone who's son had EE---he was strictly neocate only at 2 years old. there is also a condition called FPIES (?) that has some very similar symptoms. i have a friend who's sone had this and was also neocate only for quite some time.

Cheri A Contributor
Cheri A
Posted

TCA ~ go to this website RIGHT NOW! www.kidswithfoodallergies.com

It costs some to join and be able to post, but I think that you can read without joining. I also know that scholarships are available. There are several people that deal with that on the board. ((hugz))

TCA Contributor
TCA
Posted
  • Author

Thanks so much - going to the board right now!!!!

Also - we've tried Neocate and she can't tolerate that either!!!! She's baffling all the drs.! Thanks for the help.

Cheri A Contributor
Cheri A
Posted

YW! I'm over there too. If you can't read, let me know and I'll find out how we can get you on over there... some of the ladies there are SO knowledgeable and have lots of experience.

TCA Contributor
TCA
Posted
  • Author
YW! I'm over there too. If you can't read, let me know and I'll find out how we can get you on over there... some of the ladies there are SO knowledgeable and have lots of experience.

I'm in, ubt can't read naything since I haven't done the family membership thing. Our budget is stretched this month, so I'm waitin on my husband to get out of a meeting to ask if he thinks we can add another $25 in this month.....

Cheri A Contributor
Cheri A
Posted

Ok ~ I thought that you could read the general boards, but not post. :( And, like I said, I KNOW there are scholarships that are there for those that need it. They WANT everyone who needs to be there to have access and I will find out who/how to contact them to get you on to ask those questions. There is a whole folder designated to EOS and I'm sure they can help you.

Let me know!

I'll check in later.. gotta go get a couple things done before I take the kids out for a few hours..

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shai76 Explorer
shai76
Posted

I have eosinphilic esophagitis. The scope usually is a no big thing, but I think it depends on what type of sedatives are used to do it. I would seriously talk the experts about your concerns with putting her under.

My son has to have it done some day soon, so the GI doc says, but I am also scared of it. He is also suspected to have EE just like his mama. I know it's scary, but these procedures are very safe. :)

Here's a great link with everything about eosinphilic disorders, and handbooks to print out too:

Open Original Shared Link

TCA Contributor
TCA
Posted
  • Author

shai76 - I know the procedure is safe. My son had 3 done when were looking for what was wrong with him before. It's the anesthesia that scares me. It could really put her heart into a tailspin. Do you mind me asking what your symtpoms were? She has this horrible choking and gagging all the time.

Cheri - Thanks for checking. My husband thinks we should hold off for now and look for info in other places. If I'm not satisfied with what I find, I'll go back and join. I really appreciate the info.

shai76 Explorer
shai76
Posted

TCA, my symptoms were very bad reflux/heartburn that did not get a whole lot better with medication, even PPIs twice a day. I had chest pains, swelling in my esophagus that would make things get stuck in there. It always felt like I had something stuck in my throat. So I was always clearing my throat but it didn't help. I choked on liquids a lot, and was always feeling sick to my stomach, but I would want to eat and eat to keep the acid down. It always felt better to have food come back up, not acid. I also had breathing problems, like expiratory wheezing, chest tightness, as well as allergic symptoms like hives, eczema, asthma, edema. It's basically allergies plus GERD. I guess different people have different symptoms and some are worse than others.

My son also chokes and gags on his reflux and on liquids when swollowing. He's gotten better on prilosec twice a day and if I keep him away from the foods he has allergic reactions to. I know how scary it can be, and frustrating.

Nic Collaborator
Nic
Posted

Hi, I am sorry I do not recall all the details of your daughters problems as I am on and off the forum alot because I've been so busy. But, maybe completely irrelavent, my youngest son, not my Celiac, was born with developmental delays. Primarily gross motor but it affected his eating because for some reason, the tongue and cheek muscles are not strong enough. So we saw a lot of chocking and gagging. As an infant, he was barely drinking anything. He was born 10.8 pounds and by 5 months was only able to get about 3 ounces a bottle into him. Once we started him on food, it was very difficult for him. He gagged on everything. Anything that didn't just disolve, he gagged on an spit it on the table. He is now 4 and receives feeding therapy 2X a week. As I said, probably not relavent at all but thought that I would mention it.

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