Vascular Birthmarks Foundation Forum - View Single Post - Surgery at Kaiser?
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Old 03-16-2008, 01:39 AM
lovemybaby lovemybaby is offline
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Join Date: Mar 2008
Posts: 10
Default grateful for help

Hi Corinne,

Thank you for your reply. I am anguishing over the strawberry mark that is growing on my 7 wk old son's forehead. It appeared at about 1 and a half week old as what I thought was a "scratch" then maybe a rash. When I called Kaiser advice nurse she said "Just watch it", gave me no other information, and was quite uninterested in discussing it with me. Upon my Internet research I started to piece together that this is a vascular birthmark, most likely a H. I came upon this site and have been reading/researching whenever I get the chance (I have a 4 yr old, 2 yr old, and newborn) in order to get the scoop on what the best thing is to do. My heart goes out to those parents who have watched these "birthmarks" take over their beautiful sweet babies' faces/bodies. It is heartbreaking and I find myself in tears daily but bracing myself for what could lie ahead. Thank you so much for being there...I see you have offered help to a lot of people.
I have been taking pictures and waiting for my husband to get home (traveling) to help me upload them so I can send them to the doctor on this site and see if there is any use for me to take action. My concern is that this may be a compound H. There is a growing bright red bumpy surface mark (shaped sort of like Japan) but also a whitish halo around it and a bluish/purple tinge underneath that. The red part has grown and become brighter/deeper in color/puffier it has feeder type capillaries coming from a main center spot. It looks like he bumped his head and it is bruised with a red gash on top of that. It feels slightly raised (Puffy?) and looks very slightly raised (like a bump) but it is not a definite dome (like the cavernous type). Do you know when it will become diagnosable as to whether it is cavernous or not (I read that type may not grow till 2 to 4 months old). He also has a blue spot under his skin between his eyes (my daughter had this and it never turned into anything...I never had it looked at, thinking it was just a vein).I have a doctor apt scheduled with his primary physician Dr. Hassler at Kaiser, Walnut Creek, CA on April 7th. I was trying to prepare for that and I read somewhere that there are some info sheets on this site for educating/updating physicians (if needed). I have not found them yet. I think I probably need to ask what specialists are available through Kaiser and what course of action may be available if it continues to grow, etc. My impression is that they will do nothing until a case becomes extremely disfiguring/threatening. I am so afraid they are just gonna dismiss us and send us home to wait. I just do not want to miss out on an opportunity to treat this early if there could be beneficial results (smaller may be easier to treat (ie less laser treatments/smaller scar) rather than live with the fear and upset for potentially years to come (up to 10 years!?).
We can go to LA if needed, but I saw a name in San Francisco on the physician list...would you reccommend someone in particular. I really want to go to someone who is more knowledgable/experienced than our Primary...depending on if Dr. Lavine (??not sure idf he is the one on the site) reccommends me to pursue it.
Sorry this is so long. I have had no one to talk to and I cant get it off my mind. There is a lot to sift through to get educated on this and understand what I should do. I appreciate whatever advice or guidance you offer. I will try to send the pics tonight. Thank you so much for your response.
Kind regards,
Mariah
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