Future for Daughter with Achalasia

May 4, 2011

My daughter who is now 17 has had A since when was 5y/o. She had her HM w/ PF at

the age of 8. She has since then had a very bad time with chest spasms and

dumping syndrome. She is now lactose intolerant as well. For the first few years

we had her to the Ped. GI regularly to try and stop the spasms and to have her

esophagus stretched so food would go down easier. The Ped. GI here did not seem

to know a lot about kids with this condition. They really didn't want to deal

with it I don't think. They even told us that they had done all they could for

her and that we were just going to have to live with it the way it was.

So for the last 5 years or so we have done just that. We have lived with it and

coped the best way that we can. Our hope was that when she turns 18 we woulld be

able to take her to an adult GI who would be more familiar with A and would have

some other options. No adult GIs would touch her until she is 18. We are almost

there. She will be 18 in October.

I guess what I am leading up to is...what can we expect when we do see an adult

GI? What have other adults w/ A had success with? We have kind of been hoping

that medical science would have improved to the point that we would have some

new options. Maybe like an esophageal transplant or something. Even some

medication that will control the spasms. We have tried meds in the past that

have not worked. The only way we have found to stop the spasms is to giver her a

Tylenol PM which knocks her out for awhile and when she wakes up the spasm is

gone. We have been dealing with this for so long we need some light at the end

of the tunnel. This is very debilitating for her. She misses a ton of school

because of A. Her grades have really suffered. I really don't know how she is

going to be able to hold down a steady job if something can't be done for her.

She is a very smart and talented kid. I hate to see her limited by this disease.

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