Vascular Birthmarks Foundation Forum - View Single Post - Exp. w/ Strong Memorial Hospital in Rochester, NY? Premature baby with Hemangioma
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Old 06-23-2013, 07:18 AM
kg8183 kg8183 is offline
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Join Date: Jun 2013
Posts: 18

Originally Posted by smurph View Post
Hi there! Sounds like you have had a lot on your plate for the past few months! I hope you are getting some rest! Congrats on the birth of your son! In my opinion (and I'm just speaking as a mom here, but a mom who's had a preemie and had children with hemagniomas), if you feel that uneasy about it, I would try to get a second opinion if possible. As Missy said, it seems like a reasonable treatment plan to me, but if it were me, would want to be dealing with someone who does this all the time, not just every once in a while. You mentioned that your son has multiple hemangiomas with possible issues with his ear, and other preemie issues, etc. and so you have some lingering questions. If your gut is uneasy, then it might not be a bad idea to push for a second opinion for your peace of mind. I'm sure it is probably fine, but I think it never hurts to get more information from other doctors who deal with more complex hemangiomas on a regular basis. A mother's peace of mind is a very important thing, especially when you probably haven't had much sleep lately!!!
There's a few different ways to do this. I am not familiar with the doctors at your hospital or with Buffalo, so I might not be of much help to you there. But some of the most knowledgeable doctors about hemangiomas are right in New York City so maybe you could go there if you have the opportunity. You can find some of their names on the Find the Doctor link here on the VBF site. If going to NYC is not an option, you can also email Dr. Levitin or one of the other doctors here (Ask the Expert link) and let him know your child's history and what is going on with the hemangiomas/treatment. Send pictures too and he may be able to let you know if he thinks the treatment is appropriate and if things seem on track. Let us know how things go!
That's just my two cents! Hope it helps! Have a good night and let us know how everything goes!
Good call on not getting enough sleep for the last couple of months But wouldn't trade the great feeling of being a parent for anything else.

Well, today in the hospital they continued to do the vitals. They also did a blood test and we spoke to a geneticist, who cleared us without the need to do any genetic testing. Our son's dermatologist visited us in the hospital to check on the progress (which we thought was very nice of her and gave me another opportunity to ask her more questions ) and in the evening he had his first Propranolol dose. They measured the sugar level an hour later and it was fine. The vitals were also fine. And he is on the heart rate and respiratory monitor at all times and that seems to be fine as well. He is due to take one more in the lowest dosage during the night and the two afterwards will be the mid-level dosage. The good thing is that his eating has normalized because for couple of days he wasn't eating well and was throwing up more than usual after his 2 month vaccinations this past Tuesday.

Going down to NYC is probably not an option at this time. But I think asking one of the experts on this board is a great idea. I'll make sure I do send some pictures. I will also do some more research on the doctors that live closer to us (i.e. Rochester, Buffalo, Syracuse) and if there are any that specialize in Hemangioma, we may also try to make an appointment to get their opinion.

Thank you for your help.
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