Future for Daughter - Christy

[Guest guest]

Notan will jump in here I hope soon.. He is in AZ, I think... He can help you

with a recommendation for who to see.  He is also our resident Guru, knows more

than most of the surgeon purporting to know about Achalasia. 

Hang out here and you too, will know more than you thought possible.

For your daughter.. have you tried:

Drinking HOT or COLD water during spasm

Laying on a heating Pad

Taking a HOT shower or bath

Drinking a very Fizzy Soda

Have you been to the group site to look at the Doctor's posted in the Files?

I will post back or someone will with the So Cal Doctors.. that specialize in

Achalasia. 

Where did she go before?

Carolyn

mom of Cameron

  California Collegiate Shooting Sports 4-H All-Star Advisor to the most

awesome  kids of Amador County!

From: chinlover77 <christy@...>

Subject: Re: Future for Daughter with Achalasia

achalasia

Date: Thursday, May 5, 2011, 12:32 AM

 

We are located in Phoenix, AZ.

This has been a bad week for my dd she has had these spasms everyday for the

last six days. She is getting tired and I am getting frustrated. This is how it

goes though. She will have them in clusters and then she wont have any for a

month or so. When she is having them they are really bad. I should invest in

Tylenol PM. LOL

> >

> > 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.

> >

>