McKenzie's story- KHE with KMP in right leg

Vascular Anomalies can involve complex medical conerns. Information, support, treatment and support can be found here.

McKenzie's story- KHE with KMP in right leg

Postby kirkandjulie » Fri Nov 05, 2010 8:37 pm

Our daughter McKenzie was born in June 2010 with KHE with Kassabach Merritt Phenomenon in her right lower extremity. Mistaken for an AV malformation and KT at first, we finally had a diagnosis of KHE one week after she was born. She is now 4 and half months old. Doing very well with a completed therapy of Vincristine and Cytoxan. Steroids, propranolol, and compression therapy are still being used. We see multiple specialists... orthopedics, physical therapy, dermatology, hematology/oncology, cardiology, nephrology, wound care and surgeons. I have a medical background so it was an easier transition dealing with her multiple therapies but I can't imagine those who do not have a medical background and have a child that is born with KHE or develops KHE later in life to comprehend how complicated this can be. We have a wonderful support team of family and friends. I wanted to post this for anyone else who is searching the NOVA website looking for others and to share some guidance on how to go about treating KHE.

Sincerely,
McKenzie's mommy
kirkandjulie
 
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