I am looking for other parents who have had experience with vascular malformaions. My 9 month old son was born with a vascular malformation in his right arm and also a port wine stain under his arm. I am looking for any advice, doctors you may have seen or just about any information you have.. Thanks
Thanks to everyone who responded to my question about vascular malformations.. All responses were appreciated.. My son is scheduled for a MRI on May 2nd and after that we will be making an appt. to see a specialist at a Children's Hospital that specializes in Vascular anomalies.. We currently see a ped. derm group at Children's Mercy and have seen other specialist there, but feel it is time to see what someone else has to say.. My son doesn't have a hemangioma and his port wine stain is not the issue it is the actual vascular malformation located somewhere in his right arm... Anyway again thanks for all your advice this is a great resource and I am so happy to be part of it!!!
Thanks Again M.
Hi M.; The port-wine stain is not called a stain as far as I know, it is just a birth mark. My eldest daughter was born with a large one on the back of her neck. She is now 50 years old and still has it but it is much smaller. She has never had any problems with it.
I am sorry but I know nothing about Vascular Malfornation. Go to "Google" and type in "Vascular Malfornation" and you should be able to get all kinds of information on it.
M. H.
I see that one of the other mom's has taken her child to Dr Susan Bayliss and so have I. My 4 month old son was born with a pretty large portwine stain on his cheek. We saw Dr Bayliss when he was 3 weeks old. They do a laser surgery on the portwine stain every 8 weeks until it is gone. His first one was at the end of February and his next is scheduled for the end of this month.
He didn't seem to be in too much pain after the procedure, just got mad during because they held him still. It looked quite bruised, but now looks great.
I wouldn,t worry bout the Malformationif it is just a Hemangioma My 1st daughter had 1 on the soft spot on her head, If you don't think I was scared being a new mom and finding it when she was bout 6 weeks old, she had a lot of hair so it was not to noticeable. it finially stopped growing at bout the size of a quarter. it is just a cluster of blood vessels that have become tangled up and become raised it finially went away starting when she was about 16 months old. Now I have a granddaughter with the same thing hers is on her chest in the breastbone area it started out an a tiny red dot grew to a little larger than a quarter stayed that way for a long time now she is 15 months old and it is starting to reduce in size and puffyness and redness. the Dr's told me and my daughter that the blood vessels will strangle themselfs and with less bloodflow will reduce in size. and not to worry unless it gets lots bigger or changes in size suddenly. ps don't worry if it gets more raised when he is mad (it will). My daughter is 37 now and her daughter is 15 months old
When my son was just a couple of months old the dr's thought he had a vascular issue in his neck. It was something a bit worse....they had to do CT Scans and MRI's. He has NF1. Ask your Dr if they think it could be this. NF is associated with birthmarks different than port wine stains. They are kind of brownish.
My 15 month old daughter has a vascular malformation in her lip, poor little thing. Our pediatrician, Dr. Sherman, referred us to a pediatric dermatologist at Children's, Dr. Susan Bayliss ###-###-####), and we've been for an evaluation so far. Here's a link to an article: http://www.stlouischildrens.org/tabid/91/itemid/2003/Birt...
So far we have learned that port wine stains and hemangiomas are very different from a vascular malformation. Sometimes hemangiomas go away, and sometimes Drs. use lasers on them. Because of this, it is a wait-and-see approach many times.
Vascular malformations, on the other hand, don't ever get better on their own. In fact, she says they get worse, so they should be treated ASAP. I think of it as a varicose vein, and in fact, the main treatment is sclerotherapy. They shoot saline into the vein and shrivel it up.
Our next consult is on Monday, and the Dr. will have the pediatric plastic surgeon on hand as well so we can schedule the procedure.
Please write me if you want to chat. Good luck to you!
have you taken him to a vascular surgeon or a neurologist? They should be able to help you out tremendously.
Hi M.,
My daughter developed a hemangioma on the tip of her nose at 5 weeks old. We have done extensive research and even started a charity in her name(Phoebe's Fund) Since hers was on her face we were concerned about the growth stage. We found some great Dr's in St. Louis and she was treated with steroid injections (approx 3 spaced about 2 months apart) We really feel this helped. She is 3 now and it is still red but not as large or pronounced and we are considering laser treatments for it, but since it will fade over time we are still undecided. If you would like to email me I'd love to talk to you!
I have seen many TV shows about this (I am a Discovery Health nut!). The best surgeon in the country is Milton Waner of Arkansas Children's Hospital. He may have retired, but his protegee Dr. Lisa Buckmiller is still there. You may not be able to go there, but maybe if you call Dr. Buckmiller she can refer you to a surgeon in our area... (copy and paste this link)
http://www.archildrens.org/medical_services/querypage.asp...
Best of luck to you!!!
