My daughter has Klippel-Trenaunay Syndrome.

Posted by paulineaustralia @paulineaustralia, Apr 12, 2016

Hey I’m in Australia my daughter has kt syndrome and is slightly under grown in her left 1/4 I’m after and help I can get as I have no support over here and after 16 years since her diagnosis we are no further along she has been in pain here whole life suffers blood clots now has no knee cartlige and all we get is go home and take some panadol she can’t get the pension at this stage and I’m a single mum that has had no support off anyone.

Hi @paulineaustralia, and welcome to Connect. Thanks for reaching out – I applaud you for being such a strong support for your daughter.
I found some information on the types of treatment Mayo Clinic offers for KT Syndrome (http://www.mayoclinic.org/diseases-conditions/klippel-trenaunay/care-at-mayo-clinic/treatment/con-20035785). I understand that it’s unlikely you’ll be able to travel to the clinic, I hope this link gives you an idea of the methods of treatment available for this condition.
Is your daughter seeing her primary physician? Or have you discussed seeing specialist?

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@alysebrunella

Hi @paulineaustralia, and welcome to Connect. Thanks for reaching out – I applaud you for being such a strong support for your daughter.
I found some information on the types of treatment Mayo Clinic offers for KT Syndrome (http://www.mayoclinic.org/diseases-conditions/klippel-trenaunay/care-at-mayo-clinic/treatment/con-20035785). I understand that it’s unlikely you’ll be able to travel to the clinic, I hope this link gives you an idea of the methods of treatment available for this condition.
Is your daughter seeing her primary physician? Or have you discussed seeing specialist?

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Hi it’s Pauline again yes Jessica is seen by Dr Mark Moroney at Ipswich
Hospital Queensland, Orthopedic he says she needs a knee replacement but
she is too young (she is 18 and no where near over weight) I’m concerned if
they do, do this they never have mapped her veins or had a vascular
radiologist of surgeon in with her when operated on. Also she sees Dr John
Coulston vascular radiologist at Royal Womens Hospital Brisbane I think he
worries about doing anything now but especially her foot. She is not over
grown her calf muscle is smaller so I have been told she has muscle wastage
which I do not believe she is mostly in active due to pain. When she isn’t
in pain she is over active. The only pain relief the give is panadol and
ibuprofen which does nothing. We would appreciate anything you can do to
help.
Yours Hopefully
Pauline and Jessica Watkinson

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Have you tried acupuncture?

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