3 year old with VM in the leg - Vascular Birthmarks Foundation Forum
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  #1  
Old 08-03-2014, 08:32 PM
MelanieGlas MelanieGlas is offline
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Default 3 year old with VM in the leg

Hi we have recently figured out through MRI that our 3 year old daughter has a Venous Malformation in her right lower leg, extending from just below the knee to just above the ankle. (Its pretty extensive and wraps around muscle and tendons) Probably about once a week she wakes up in the night crying with pain and limping from it. We have recently seen Dr. John at Sick Kids in Toronto, Canada and we have booked sclerotherapy, the first one for the end of this month. I now have second thoughts on doing the sclerotherapy. Does any one have experience with this with a child this young?? How was recovery? How painful was it after the procedure and for how long?? Does anyone have personal experience with Dr. John performing the sclerotherapy?? I'm just really scared of the risks.... I know they have to read them to you even if they rarely happen but its really scary! Our daughter has full function of her leg and muscles and we don't want to mess with that. Please if anyone can help out with any info that would be really appreciated, we are still very new to this diagnosis!
Thanks, Melanie
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Old 08-04-2014, 01:49 PM
missy missy is offline
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Hi and welcome!

I wish I could answer your questions. I've been looking around for someone who might have experience, especially at Sick Kids, and can't find anyone.

You can probably call the office and ask if they would be willing to get in touch with another family in your situation, so that you could speak with them.

I wish I had more to offer.

Please let us know how things go!

Missy
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Old 08-07-2014, 12:33 AM
larogers larogers is offline
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Hi Melanie,

While I don't have the experience with a child with a venous malformation I do have the lifelong experience (I'm 45 now) of having a very extensive venous malformation in my lower right leg from just above the knee to my foot. It was first noticed when I was two but was not properly diagnosed until I was 14 and at that time was told compression stockings were only treatment. I am just now undergoing the sclerotherapy treatment because I only recently found out about it. I don't know if your daughter's malformation is the same as mine but I can tell you that if my child had one like mine, I wouldn't hesitate to have the sclerotherapy for him in order for him not to go through what I did growing up. I can tell you that my experience with sclerotherapy has been good. The worst part is getting the IV. Tylenol and Motrin relieve any pain and swelling. I've undergone five sessions so far with my 6th at end of month and more to go. I would be happy to share more with you if you'd like.

Lori
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Old 08-07-2014, 02:35 AM
MelanieGlas MelanieGlas is offline
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Thank you very much for both your replies! larogers I am going to private message some more questions if that's ok!
Thanks, Melanie
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Old 08-07-2014, 03:15 AM
larogers larogers is offline
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That is absolutely ok!
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Old 08-07-2014, 03:26 AM
larogers larogers is offline
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I don't know how the private messages work, so please let me know if you need my contact information.
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Old 08-07-2014, 03:50 AM
MelanieGlas MelanieGlas is offline
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I am new to this as well!! I think if you.click on your name then in the right hand corner you will find your messages. if you can't find it I would love your contact info! Thanks again!
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Old 08-07-2014, 03:52 AM
MelanieGlas MelanieGlas is offline
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Wait I don't think you even need to click on your name..in the right hand corner of the page where it says your name it also shows private messages...click that and I would guess it would bring you to your messages!
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