Stuve-Wiedemann Syndrome

My daughter (15 yrs old) has Stuve-Wiedemann Syndrome.  She has managed well with her disorder including surgery to correct severe scoliosis (which was fused and roded) and a titanium rod used to straighten her left thigh bone.  The one thing that effects her the most is a sweating issue.  She sweats when she is cold and not when she is hot.  A sweating episode can be brought on by drinking something cold and cold weather.  Sweating is severe.  She sweats through layers of clothing and must change a number of times a day.  Sweating occurs all over her body.  She often has salt deposits on her eyebrows from the sweating as well as salt stains on her cloths.  Can anyone give me any information about this phenomenon.
Thank you

[camismith08]

I can relate to this as I have the same condition.  My sweating is very profuse, especially within the last 3 years.  It seems to be out of control and has a major impact on my quality of life.

I am so excited to have found someone else who can relate!

[balkease]

hi i can relate to your condition as my son age 6 has the same syndrome. i realised his sweating disorder after his first birthday. like your daughter my son goes through layers of clothing. i have taken him to many specialist to find a solution of some kind to help him have a nomal life as possible but i have had no luck no doctor can understand his syndrome or a solution for his sweating. i have tried giving him lots of pedialyte, juice and hot drinks but this doesnt seem to help.

if you ever find a solution to this problem plz post it.

thank you and good luck

[Budday]

We found the solution for the Cold Induced Sweating from Dr. Hahn at London Hospital (Ontario)  She prescribed a very small dose of chlonidine (.5mg) which she takes 3 times a day.  It's working very well !!!!  It only took me 15 years to find her.