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  #1  
Old 11-06-2006, 12:54 AM
MichelleInOz
 
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Default Foot Overgrown - What can we expect?

Hi everyone

I am new to this site, having come across it when searching for information. My daughter is 7 years old and in the past 6 - 12 months we have noticed one of her feet which has a port wine stain, has grown a size larger than the other one. The big toe is especially enormous and causes her pain, as well as tingling and burning sensations. It bleeds very easily. She knocked it on a cushion and the impact of her foot against the fabric was enough to make it bleed profusely. The birthmark itself has also grown recently toward her leg which is concerning us. My daughter is very worried about it.

We are booked into a special clinic for vascular birthmarks next month and are wondering what we can expect in terms of possible treatment, surgery or management??

Any thoughts would be appreciated as I'm getting quite concerned, especially with the recent growth of the mark itself.

Many thanks
Michelle
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  #2  
Old 11-06-2006, 02:06 AM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 533
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Hi Michelle,

First of all welcome to the group.

Which VB clinic do you have an appointment with? There are several of them, and someone on the group might have been to the one you are going to and could give you some helpful info on it.

Have you done any research on KT syndrome? From what you said about the PWS on your daughters leg and foot sounds like similar effects of KT. KT effects arms and legs that have PWS on them.
I would recommend getting into contact with the "Ask the KT doctor". You can find his info on the front of this website. If you email him a picture and info he can give you his opinion before you go to your doctor appointment.

Hope this helps, I am sure others will chime in soon.

Hank
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  #3  
Old 11-06-2006, 05:24 PM
nickbar nickbar is offline
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Location: Pacific Northwest
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Hello and welcome to the group. I am sorry to hear your daughter is in pain.

I am happy to hear you'll be seeing a vb specialist. The doctor will probably discuss with you laser treatments and compression stockings. The doctor can give you more information on KT Syndrome. (Klippel-Trenaunay Syndrome). I would also encourage you to email Dr. Delfinian on the "ask the expert" on the home page of this site.

Posted on this site is a paper on "Things you can do to manage KT"...these are great tips that can help with any vascular type pain (with or without KT).

If you would like more information on KT, let me know.
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  #4  
Old 11-08-2006, 01:40 AM
Lisa_99 Lisa_99 is offline
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Join Date: Mar 2004
Location: Madison MS
Posts: 48
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hi!

" what we can expect in terms of possible treatment, surgery or management??.."

To answer your questions;
the possible treatment may be suggested thorough care of the wound on your daughters foot.
wrapping w/ antibiotic cream, there are prescriptions RX's that can help ----
compresssion garment for the swelling, ( edema or more severe lymphedema)
possible manual lymph drainage ( MLD ) massage for the affected limb. (( this is usually available via a PT < OT or qualified massage therapist....))

surgery suggestions may be:
laser treatment to help any vascular issues underlying in the limb,
ENVT -- endovascular laser therapy ---- THIS is not vein stripping of bad veins.

Be very cautious of any suggestions of surgery, Be Sure the deep vein system is healthy by getting the proper scans and tests done to determine this.

Management --
IF compression stockings are suggested. Do your best to instill in your daughter she needs to do this to take care of her limb...

YOu mentioned the tingling or burning sensation - This most likely indicates a vascular issue of some type..One of these syndromes is called KT for Klippell-Trenauney sydrome. This could be veins or an artery but does indicate a vascular malformation. You will not know unless the proper tests are done...

YES without proper care and maintanence the swelling will possibly get worse
over time.

I will be glad to answer questions or email off list if you need me.

Lisa
Addies' mom
Addie - 17 yr old, vascular / pws patient
Mississippi
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  #5  
Old 11-13-2006, 05:21 AM
MichelleInOz
 
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Thanks for all your replies.

Hank - we're in Australia so it's a clinic here at a children's hospital. My daughter's paediatrician mentioned it may be KT syndrome so I've had a bit of a look - it sounds like there's some potentially serious side effects so I'm hoping with management, as suggested by Lisa, that we can avoid any of those bad effects.

Lisa - thanks for your post - very helpful.

Nickbar - thanks for the tip about the KT info sheet - I had a look at it.
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