my son has lymphedema

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my son has lymphedema

Postby pldufrane » Tue Feb 09, 2010 11:29 am

my son has lymphedema that mostly affects his right leg. he has no primary care physistion. we live in upstate ny and he is having a very hard time finding a doctor or therapist in this area.he has been hopitalized many, many times with infections and each time it seems to get worse.if anyone has any advise we would greatly appriciate it.the doctors here treat him with IV antibiotics and then send him on his way until the next time.my son has been admitted to the hopital 27 times in one year.i am at my wits end trying to find answers on what can be done for him .once again thank you for any advice or information thay anyone can give
pldufrane
 
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Re: my son has lymphedema

Postby patoco » Wed Feb 10, 2010 9:27 am

Hi and Super welcome to our family.

First, I wanted to share about a group we sponsor called:

Children with Lymphedema

http://health.groups.yahoo.com/group/ch ... ymphedema/

There are close to 400 parents in this group - each with a child (sometimes 2) with lymphedema. The amount of information, support and knowledge shared there is absolutely incredible. I think you would really enjoy the group and find the support and encouragement you need.

You didn't mention how old your son is and/or how long he has had the LE. When I was growing up, cellulitis was the number one "terror" or complication I had with this condition. I can't even begin to tell you how many times I had/ or had haved it.

This pag gives you a very comprehensive rundown of lymphedema in children:

Lymphedema in Children

http://www.lymphedemapeople.com/wiki/do ... n_children

Hopefully, this is a start for you. While you are going over these pages, just jot down any questions and I'll be more then happy to try and answer them.

Super best to you and your son

Pat
One this that made a significant improvement was to go under the care of an infectious disease doctor. I have been on a daily dose of preventative antibiotics for several years and I went from having to be hospitalized at least once a year (sometimes more) because of cellulitis to where it has now been some 5 years since I had an infection serious enough to be admitted. I would highly recommend your son seeing one - and hopfully the doc can help on this.

If you also go to this page:

Lymphedema Therapists - Schools of Therapy

http://www.lymphedemapeople.com/thesite ... herapy.htm

it will provide direct links to all the schools that train and certify lymphedema therapists. From there you can plug in your address or search by locale to locate a therapist.

This page will provide some helpful tips on preventing cellulitis.

Prevention of Cellulitis

http://www.lymphedemapeople.com/thesite ... ulitis.htm
patoco
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Re: my son has lymphedema

Postby pldufrane » Wed Feb 10, 2010 10:27 am

thank you so much for all of the info....my son is 28 years old but has been suffering with LE mosy of his life.also his son, my grandson, was born with milroys.once again thank you. this site is wonderful
pldufrane
 
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Joined: Wed Feb 03, 2010 12:17 pm


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