Vascular Birthmarks Foundation Forum - View Single Post - Exp. w/ Strong Memorial Hospital in Rochester, NY? Premature baby with Hemangioma
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Old 06-22-2013, 08:10 AM
kg8183 kg8183 is offline
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Join Date: Jun 2013
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Default Exp. w/ Strong Memorial Hospital in Rochester, NY? Premature baby with Hemangioma

Hi,
I am really sorry for the long post.
a little background info. Our son was born at 37.5 weeks weighing 4.4 pounds. Spent about 8 days in the intensive care unit to stabilize sugar level in his blood. At 2 months of age he weighs almost 10 pounds and while he is in 10th percentile for his age in weight, height and head circumference, his growth rate is fine.
We were told by the dermatologist few days shy of his 2 months birth date that the red birthmark-looking thing that is in front of his ear that stretches all the way behind the ear is Hemangioma. it was visible at birth with bright red color but was rather small. As time went on, it became darker in color and grew bigger to the point that it is narrowing the ear canal and the lower flappy part of the ear is pushed up. Couple of weeks ago we also noticed a red mark on one of his toes that has gotten a little bigger since we noticed it and there is also another small red dot on one of his fingers, which has been there since birth. He also has stain-like birth mark on his necks, but this does not resemble hemangioma from what I have read and what the drs told me.

We were told by the dermotologist that we need to get our son on Propranolol treatment, and since he is very young, the procedure needs to start in the hospital where they will monitor him for two days and the treatment can continue at home. We live in Rochester, NY and the only hospital that does this is Strong Memorial Hospital. We took our son in today in the afternoon and he was due to take the first dosage at around 6pm once they did vitals, etc. I made sure that I brought up all his past medical issues since birth, showed all the red spots on his body, which I guess could possible indicate that there may also be internal hemangiomas, my concern about Phace Syndrome and that there has been only one limited study for Propranolol usage on preterm and babies that were born underweight. They tried to do EKG but our son did not "cooperate" so they decided that they are not going to do EKG (didn't really explain why) and will just do the vitals every 4 hours until tomorrow morning and then they will have us meet a Geneticist and if everything is OK, they will proceed with the treatment. They will have him take the medication for 2 days (6 times total) starting at lower dosage and working up to the full dosage of 2mg/kg/day divided by 3.
To be short, I am not really filling comfortable with this hospital. Neither this website nor Nova have Strong Memorial Hospital (Galasano Children's Hospital) in Rochester, NY or doctors from Rochester,NY on the recommended hospitals/doctors list. I was expecting a special unit specializing on vascular anomalies with doctors and nurses specializing in this field, but I didn't notice this. In fact, one of the nurses told me that the dermatologist is the one "running the show" who is not even in the hospital and an example of this is when I was told that our dermatologist told them that since the total number of red spots are under 5 and that they are not grown in a certain way, we do not have to worry about internal hemangioamas at this point. Additionally, they have kids with all sort of medial conditions.
His multiple red spots on the body and the fact that he was born prematurely and underweight concern us a lot. Have any of you had experience with this particular hospital and any doctors in this hospital dealing with Hemangioma? What has your experience been like? Now Buffalo's Children's Hospital has two doctors that are recommended on this webisite and NOVA's website. If needed, we could take our son to Buffalo.

We would be very thankful for any input. thank you very much
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