Exp. w/ Strong Memorial Hospital in Rochester, NY? Premature baby with Hemangioma - Vascular Birthmarks Foundation Forum
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  #1  
Old 06-22-2013, 07:10 AM
kg8183 kg8183 is offline
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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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Old 06-22-2013, 02:21 PM
missy missy is online now
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Hi and welcome!

Congratulations on the birth of your son!

We list doctors and hospitals that request to be listed, once we've determined that they do have experience with vascular birthmarks. Not being listed does not mean that they have no experience or expertise.

In my opinion, the treatment plan is a good and viable one. Propranolol sounds like the best and least invasive option.

Once you begin to see progress at the ear, then I would investigate internal ones if you'd like.

Let us know how things progress!

Missy
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Old 06-23-2013, 01:39 AM
smurph smurph is offline
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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!
Shannon
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Old 06-23-2013, 05:48 AM
kg8183 kg8183 is offline
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Quote:
Originally Posted by missy View Post
Hi and welcome!

Congratulations on the birth of your son!

We list doctors and hospitals that request to be listed, once we've determined that they do have experience with vascular birthmarks. Not being listed does not mean that they have no experience or expertise.

In my opinion, the treatment plan is a good and viable one. Propranolol sounds like the best and least invasive option.

Once you begin to see progress at the ear, then I would investigate internal ones if you'd like.

Let us know how things progress!

Missy
Thank you for your input. I'll certainly update on the progress.
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Old 06-23-2013, 06:18 AM
kg8183 kg8183 is offline
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Quote:
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!
Shannon
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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Old 06-23-2013, 01:56 PM
smurph smurph is offline
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Sounds like a plan! Glad the dermatologist came in and you got some more of your questions answered. Let us know how it goes!
Shannon
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