Sue. WAS: Dilations-15 y/o

[Guest guest]

Sue wrote:

>

> We are still in the crying, disbelieving, fear, devastating,

> depression already, doesn't want to go to school type phase.

>

Very normal, it can even make a family a little crazy. Hopefully, in

time you will look back at think did we really go through it that bad,

because things will be much better and this time will seem like a bad

dream. It won't ever completely go away, but it probably won't remain

the nightmare it seems to be now.

>

> ... We are in ville FL and treated with Nemours Children's

> Clinic, although I think I may try to go to Mayo clinic here if they

> will take her, or I will go to Tampa or Atlanta or anywhere really if

> I can help her.

>

You already have some good recommendations for doctors. There are others

that may also be considerations for you.

A number of people from the group have used Dr. Rosemurgy in Tampa. If

you search the messages for " Rosemurgy " you can find them.

http://www.alexrosemurgymd.com/achalasia/

http://www.alexrosemurgymd.com/

There are also some good achalasia doctors in Atlanta. Others can give

their info if you are interested.

> Although she probably wouldn't want to go, are there any summer camps

> for children with rare diseases or GI diseases?

>

I can't speak for these camps and you would have to check with them to

see how appropriate they are in her case.

http://www.camptwinlakes.org/

http://www.boggycreek.org/index.html

http://www.victoryjunction.org/

http://www.seriousfunnetwork.org/Programs#pCamp

Interesting topic - children and camps - not specifically achalasia related:

Health-related quality of life changes of children and adolescents with

chronic disease after participation in therapeutic recreation camping

program.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3141371

Health-related quality of life improves in children and adolescents with

inflammatory bowel disease after attending a camp sponsored by the

Crohn's and Colitis Foundation of America.

http://www.ncbi.nlm.nih.gov/pubmed/15677910

Outcomes associated with participation in a therapeutic recreation

camping programme for children from 15 European countries: Data from the

'Barretstown Studies'.

http://www.ncbi.nlm.nih.gov/pubmed/15186893

Children's voices: qualitative data from the 'Barretstown studies'.

http://www.ncbi.nlm.nih.gov/pubmed/16084921

Outcome effectiveness of therapeutic recreation camping program for

adolescents living with cancer and diabetes.

http://www.ncbi.nlm.nih.gov/pubmed/16919812

notan