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-   -   Compression Stockings for toddlers (http://birthmark.org/board/showthread.php?t=544)

ehsieh 03-05-2004 01:25 AM

Compression Stockings for toddlers
 
My 19 month old toddler has a right leg venous malformation that requires a compression stocking. I have a place that will custom fit one for her, but I was wondering if anyone has experience in general w/ purchasing these items and are there some that are more comfortable for the summer. Also, has anyone tried a non custom fit "off the shelf" garment w/ any success for this age?

Lisa_99 03-06-2004 10:03 PM

Re:Compression Stockings for toddlers
 
HI , My daughter is 14 yrs old, was diagnosed w/KT syndrome in 2000. KT is a vascular malformation syndrome.

She wears a Josbt Ultra Sheer compression knee hi but has had thigh highs also. Her first stockings were prescribed by a doctor. It was a wrap around Sigvaris garment that cost almost $400 and then had to be cut down to fit her. ( She was 9 at the time).

I discovered w/ lots of internet reading you can order compression stockings at www.supportshop.com at 1/2 the retail price. They do not have custom ones.

I have purchased one pair of compression knee highs since her KT diagnosis, they were not used. The Jobst just work better for her and are more sheer.

hope this helps

Lisa
Addie's mom
Mississippi

ehsieh 03-06-2004 11:45 PM

Re:Compression Stockings for toddlers
 
Lisa,

Thanks for sharing your experience w/ the over the counter stockings. I'm just curious, before your daughter's diagnosis in 2000, was there another diagnosis that she was given when she was born? Our daughter was given an initial dx of KT syndrome, but we went to the Vascular anomaly clinic at CHildren's Hospital in Boston, and the vascular surgeon felt that she had a straight forward venous malformation. We have decided to wait on any MRI exams since it will require general anesthesia. Does your daughter have any leg length discrepencies? Lastly, and I hope this is not too personal, how is she coping with her diagnosis and the cosmetic aspects now that she is reaching her teenage years? I wonder sometimes about how my own daughter will manage as she gets older.

Thanks again,

Elaine

Lisa_99 03-07-2004 12:43 AM

Re:Compression Stockings for toddlers
 
Elaine,

Well I think she's handled it very well considering ... her info, bio and pix is at a private link on the KT site. I'll be glad to share it w/ you. Email me at msearp9@jam.rr.com. I think most of your questions will be answered there .. ( and I won't have to type a book here.. :-)

About any other diagnosis b/4 the KT? No , none at all. All we knew is she had a birthmark..... the doctors said" oh it will probably go away as she gets older.." I remember thinking that is a programmed answer for they didnt' know nor had a clue..
How she handles it now... She knows her limits physically and she is very active. The doctors stated that was a GOOD thing.. To keep that blood flowing. I can tell you if you're daughter has any underlying vascular malformation issues, especially blood pooling she more than likely will have issues come out around puberty.

How it affects her now? The Kt will always be with her , she knows that, she's learning what will and will not work for her. For ex: in just the past few mths she's realized she has to eat something more than 3 times a day, even if it's a snack, she has to have lots and lots of water. And IF her foot/ leg is hurting she has to elevate it to get thru the pain. She wears her stocking pretty faithfully and always has.

Cosmetic issues:. the PWS is part of her, she doesn't seem to care to have the pws issue corrected w/ laser. We used to tell her it was extra angel kisses that GOD gave her. She knows better now.. :-) She is a strong kid and doesn't let folks ignorance hold her back. She's been known to tell the guys in school ( back in middle school ) Hey if you want one like this we can sure paint it on and then you can be like ME! ha ~ I had to laugh. .. some days have been harder than others, but I have tried to instill in her that she is not her birthmark unless she lets the birthmark control her. IF folks can not see past that then they are not meant to be her friends anyway.. It's sad but it's very true...

Write soon..

Lisa



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