Five Year Old Daughter With Achalasia

September 11, 2011

Hello! As a mom of a child with achalasia, I feel your pain, concern, fear. In

Boston is Dr. Lutecek (sp ) check in the data base, if he is not there get hold

of me and I will find him. Do not allow this child to lay on her back. Please

please get ahold of a specialist right away. I would be happy to talk to you.

Also go to reflux.org and read some of the stories there. Achalasia is not

known so much but your fear and angst is. These kids have had fundos too and

their moms are amazing. The worry is the possibility of aspiring food into the

lungs. She has had dilations??? Hmmm. Didnt know they had bougies that small.

Please again if I can be of help let me know. You are looking for a pediatric

achalasia specialist. Carolyn mom of Cameron... Myo'd and fundo'd in 2005.

>

> To the achalasia group:

> Hi I am new to this group! I have a Down's Syndrome daughter who is five years

old, and who after throwing up her whole life, was diagnosed in May with

achalasia. She would eat something (mostly I noticed it with rubbery foods, like

hot dogs, eggs, pasta etc., but other times it was any food, even well chewed

foods, or even liquids!) and suddenly she changes into a different person. She

is usually a cheerful cutie, but at these times, she becomes withdrawn and very

sad, and will just lay on the floor drooling and foaming, and eventually throw

up undigested food. Once it comes out she is immediately better, but sometimes

she will throw up undigested food for a few days in a row. Other times she can

go a few weeks with no problems. She takes prevacid every day which seemes to

help at first-- now I am not so sure, but they want her on that forever so that

acid wont damage the esophagus further. She has had a few dilatations, and I

guess they have helped somewhat... it is hard to be sure.

> My reason for writing to you all is this-- while my daughter is unusually

bright and high functioning for a 5 yr old with Down's, she still is a 5 yr old

with Down's!! She tells me I am not feeling good, or i need to throw up, but

thats it. I need some guidance from adults who have this. What does she feel

when she stops eating and drools? Is it nausea? Why does she drool? Why does she

sometimes want us to gag her to help her throw up? Is there something else to do

instead of gagging her? What foods should we avoid? What helps during before

after meals? What are spasms? How do I know if she is having them? Should I do

more balloon dilatations, or a surgery? I am sure I have more questions but Ill

leave it at these for now... any replies would be MOST APPRECIATED! Our Dr. is

fantastic ( Nurko from Children's Hosp. of Boston) but he does not have

achalasia! Thank you everyone!!! I feel so lucky to have someone to talk to who

understands me at last!

>

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