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Zak'sMommy 07-05-2007 04:52 PM

The Unkown
 
My son is 10 weeks old and was diagnosed with KT from the first day of birth. The disease affects the lower leg. Doctors have identified hemangiomas and an AVM in this leg along with several birthmarks which appear on both legs.
We were referred to one of the genetic specialists here at our local childrens hospital who has since re-diagnosed our son with KTW (Parkes Weber Syndrome) I have not been able to find much information surrounding this particular form of KT.
I am wondering if anyone out there has a child with this form of KT? I am also very curious as to the level of pain that may be involved at this point and the potential for heart failure. He is so small and unable to communicate such discompfort.
I would also like to know if there are any specialists out there that are familiar with this form of KT. There are no doctors that specialize in KT or Parkes Weber here in our state.
Any suggestions or reccommendations are greatly appreciated.
Thank you,


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