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roccosma 12-31-2003 01:33 AM

hemangiomas & Phaces syndrome
I am looking for anyone with similar experiences with hemangiomas and Phaces syndrome. In october/03 my son, who was 4 months old, had a small (pea sized) hemangioma on his right side of his face. He had two strokes, on the right side of his brain, that they are attributing to his hemangioma. In addition he did have a PFO in his heart, which was surgically closed via heart surgery. The Doc's are all attributing this to a mild form of Phaces syndrome..Anyone out there with any similar experience?

smedstrom 07-23-2004 03:07 AM

Re:hemangiomas & Phaces syndrome
Hi! My son was diagnosed in February 2004 with PHACES. He was born in June, 2003. Luckily, our pediatrician has not found any problems with his heart, though we have not had any special tests done for that. He has a Dandy-Walker Malformation on the left side of his brain, and his hemangioma covers the left side of his head, his entire left ear, and below his left eye. We have been lucky with that too, as the hemangioma did not seem to affect his vision.

Well, I just joined the discussion board. From what I understand, PHACES is not common in males, so I was interested to read your post.

Best wishes to you and your son.

roccosma 07-23-2004 04:45 AM

Re:hemangiomas & Phaces syndrome
See I really don't know much about PHACES syndrome, at this point they are still doing testing to find out what is going on with my son. About two weeks ago, my sons dermatologist attended a conference and my son's case was presented nationally, because of the oddities involved. So now they are doing enzyme testing, and we will finally have the results tommorrow! His hemangioma is still very little, only about the size of the hole in a CD. But he does have a malformation of his internal carotid artery, and one webbed toe, which they are saying are all signs of PHACES Syndrome. How did you find out that your son had PHACES syndrome? They are saying my son's case is very unusually presented because his hemangioma is so small!

nickbar 09-02-2004 11:04 PM

Re:hemangiomas & Phaces syndrome
THere is a new support group you might want to join.

(I manage the vascular birthmark support group on msn).

Trinemor 07-31-2005 09:56 PM

Re: hemangiomas & Phaces syndrome

Trine from Norway responding.
I don't know much about PHACE yet, but I've been diagnosed a PHACE as an adult.
Do you know any adult PHACE's?

But, even if I don't know much science on PHACE, I sure know a lot about how to grow up and get an education, a job and how to cope having all those physical challenges all the time, and wondering if there's a stroke coming up any minute.

Still, I'm not "just PHACE". Mainly, I'm Trine, the social person who loves mountain climbing, taking care of friends, and loving my work as a psychologist for children. Deaf and hard of hearing children, since PHACE has influed my hearing and vision due to enormous hemangiomas in my face as a child.

Parents! PLEASE keep negging and don't accept "specialists", phycisians who tell you not to worry, not to have surgery!
It may cost a lot! Lack of vision, and hearing... AND, remember, we're small personalities yearning to evolve and develop as a little person. We're not just PHACE, doctors and hospitals! And remember to get some time to be on your own as parents, get enough sleep!!

Warm summer greatings from Norway!

nickbar 08-02-2005 12:46 AM

Re: hemangiomas & Phaces syndrome

Cassie from NZ is an adult with PHACE. I haven't heard from her in a long time. I will try to find her email address....I think I found it...if you would like to have me email her and have her reply to you, let me know.


Cassi 10-23-2005 04:56 AM

Re: hemangiomas & Phaces syndrome
Never Fear!.....Cassi is Here!.

I see your looking for me Corinne?.

Anyone here wanting to email me, may do so.


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