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-   -   Parkes Weber Syndrome - Micro fistula (http://birthmark.org/board/showthread.php?t=3982)

fammie 08-09-2010 03:33 PM

Parkes Weber Syndrome - Micro fistula
 
My six years old daughter has micro fistula (red veins) on her right hand, right breast and her right back. We have been told any treatment would make her condition worse (alcohol, laser) since there are all small veins. Her right hand is very hot. It is longer than her left side (two centimeters) and the size around her arm is four times bigger. (Her left hand is size 8 and her right hand is size 16) Since winter she showed shortness of breath after her dance lessons. All her body was hot and feels like burning.
We passed on social problems that she goes through every day at school, and the appearance. Just worry for her heart.
Want to know if anyone has knowledge of a similar case and could share it with us.

Thank you

missy 08-09-2010 06:28 PM

Hi and welcome!

I can't think of anyone who describes that exact set of symptoms and signs, but other parents will chime in soon.

What is your daughter's prognosis? Is there no therapy at all that would help her?

Missy

fammie 08-11-2010 02:45 PM

Hi Missy, no there is no therapy which can help her. she has all small veins in her hand and shoulder. The only successful treatment which has been done on simliar case is alcohol. In her case since she would need multiple operations (there is no big artery) and the doctor in Toronto does not recommand it.

nickbar 08-12-2010 10:26 PM

Have you emailed the ask the experts? Dr. Geronumous or Dr. Nelson regarding laser? Dr. Konez about embolization? I would encourage you to do so. Please email me directly if you have any questions.

fammie 08-13-2010 02:00 PM

Hi I have sent her files to specialist in US, CANADA and UK. They have advised me they will get back to me. They advised me the laser will damaged the small veins and the embolization only works if there is a big artery. Her hand, shoulder and fingers are all full of small veins which are very hot and big.
My husband is convinced that there is nothing we can do and she has to live with it until a treatment is founded. I am not convinced and hoping to find a similar case who has found the treatment.

nickbar 08-13-2010 11:06 PM

I would still get a direct opinion from the two doctors I mentioned above if you have not yet. They devote a lot of their time to research and improving treatments for capillary malformations and vascular tumors. Please do email them if you have not talked with them yet.

Jenmatt 02-21-2013 12:10 PM

I see this is an old post. How is your daughter doing with the pws? I think my son may have this. His whole right leg is covered with scattered small red veins. That have gotten worse as he gets older. This leg and foot is slightly longer and thicker than the other not really noticeable and it is also warm to touch. I'm so scared about his future :( did you's find any treatments? We are stil in the process of seeing a dr for diagnoses.

Jenmatt 02-22-2013 05:14 AM

Parkes weber syndrome
 
Quote:

Originally Posted by Jenmatt (Post 26339)
I see this is an old post. How is your daughter doing with the pws? I think my son may have this. His whole right leg is covered with scattered small red veins. That have gotten worse as he gets older. This leg and foot is slightly longer and thicker than the other not really noticeable and it is also warm to touch. I'm so scared about his future :( did you's find any treatments? We are stil in the process of seeing a dr for diagnoses.

Please any info u have would be great? How is your daughter doing now? Has she received any treatments

dancermom 05-06-2013 07:29 PM

New group for Parkes Weber and Klippel Trenaunay
 
Hello, we have formed a new sub-group at http://avmsurvivors.org/ for Parkes Weber, Klippel Trenaunay, Sturge Weber, and Wyburn Mason. Please join us, and you will find information and support. Best wishes!

dancermom 08-29-2013 07:36 PM

Also, I would recommend the Facebook group "Klippel-Trenaunay-Weber Syndrome" to anyone with KTS or PWS.


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