Some questions for other parents with children taking propranolol - Vascular Birthmarks Foundation Forum
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Old 02-10-2009, 01:10 AM
khubbard khubbard is offline
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Question Some questions for other parents with children taking propranolol

My almost 7 month old has a hemangioma on her right cheek, directly underneath her right eye. She was treated with steroids from 7 weeks of age to five months old, and we experienced some rebound growth. Along with her doctor (a pediatric dermatologist), we decided to try propranolol. She has been taking it at home (I know some children are hospitalized when starting) beginning with a very small dose, and working up to the target dose on day 10. Our regular doctor (who we love and trust) happens to be out of the country for two weeks and right now we are being followed by another pediatric dermatologist until he returns. We saw this doctor today and she became concerned that our daughter is sleeping through the night (she should be at 6 months old), as this is too long for her to go without a feeding because of possible low blood sugar caused by the medication. She totally freaked me out, mentioning things like seizures and becoming comatose in her sleep. Scary stuff! So, we are going to have to start waking her in the middle of the night to eat to avoid the possible low blood sugar. The confusing thing is that our other doctor knew that our daughter is sleeping through the night and did not seem concerned about it being a danger to her. I'm just curious about the other children taking propranolol out there....did anyone start the medication at home as opposed to the hospital? Does anyone have a child around my daughter's age taking the medication who has also been advised to add a middle of the night feeding due to the blood sugar issue? Thanks!
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Old 02-10-2009, 11:48 AM
Dawn and Baby Presley Dawn and Baby Presley is offline
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oh my god no wonder you are scared!!! even though our daughter started in the hospital, she was never woken for anything..not even a vital check through the night, they kept her on a pulse monitor for my own nerves and thats it...she is now at a double dose and you would never know it...she sleeps throught the night and im talking 12 hour stretches!
Do you have all the info on Propranolol?? if not i can send you the research thats been done thus far if you want?
My daughter goes into peds at our hospital every other day just to have her blood pressure taken and her glucose checked, and she has been for the most part consistant!
assuming that your child is in perfect health otherwise, i wouldnt worry to much, but im not a doctor, im just speaking from my own experiance and all the other moms i have talked to..I have researched this for a long time, and i wouldnt have gone this route with all those complications that Dermatologist explained to you! anything is possible but like i said in my research over the months, i havent heard of a case yet with those results.
Take a deep breath and relax, im here for ya, i know how scary it can be, going in there room through the night to see there little chest go up and down..believe me i have been there, but its been over three weeks for us, and now its like giving her any other medication, and the scare is slowly leaving..it was just the unknown that scared me..but seeing her H shrink so quickly is enough to take the scare out of me!!
thinking of you
Dawn
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Old 02-11-2009, 01:50 AM
ruthiesmom ruthiesmom is offline
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I am with Dawn. I am not a doctor, but I haven't heard of this. Ruthie has now been on propranolol for 2 weeks and sleeps through the night. I was never told to wake her up and feed her. She was pretty tired initially BUT I think that was because she was in the hospital where they were waking her up and poking her every few hours! She was completely off schedule and exhausted from all of the interruptions. Once she recovered and we got back into a schedule at home, things have been fine. Her vitals have been checked twice so far and we go to the doctor tomorrow. After this appt, we are going every 2 weeks for monitoring. The doctor told me to call if I noticed any changes in Ruthie in between appointments - like if she's not eating, is lethargic, etc. The only thing that I have noticed (and I am not even sure if it's related) is that she is having less poopy diapers these days. She was going every other day and now it's more like once a week. Has anyone else heard of propranolol effecting that?

Good luck Kate! Hang in there.
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Old 02-24-2009, 11:29 PM
SCollins5501 SCollins5501 is offline
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My daughter has been on propranolol for a few months and was never needed to be waken for doses. We have done all meds at home and have only gone in for vitals and weight checks to our ped.
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Old 03-01-2009, 08:51 AM
evander09 evander09 is offline
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Default cavernous hemangioma on the face

Caroline is so beautiful. She is so expressive and such a happy baby!
My granddaughter, Merrin, was diagnosed with an hemangioma when she was 3 weeks old. She was referred by her pediatricain to the Hemangioma Center in Charleston, SC. Dr Hochman removed the hemangioma when she was 11 months. Merrins hemangioma grew rapidly the first 7 months and then stopped growing. It was quite large. It was located right under her eye and beside her nose. It pushed her nose down and also her lip. The before and after pics are amazing. Dr Hochman did a wonderful job. I would like to send you or anyone else who would like to see some before and after pics. ( I tried attaching to this email but got stuck) Having been there & watched my daughter and son in law go through this period I am here to tell you that it will be all ok. I hope to hear from you.
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Old 04-15-2009, 10:11 PM
jess123 jess123 is offline
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could you send me those pictures to my email jaaron.18@hotmail.com thanks so much! we are currently going through decisions on what to do with my daughters and we had looked into seeing Dr Hochman. Thanks!
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Old 04-18-2009, 07:42 PM
Katie&Lexi Katie&Lexi is offline
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Can you also please send me the before and after pictures as well? kathrenyoung@gmail.com
Thank you! Katie
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Old 08-11-2009, 05:24 PM
Haydens Mommy Haydens Mommy is offline
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Hi! My daughter is 5 months old today and has a hermangioma on her inner labia. It looks as though someone has placed a kidney bean down there. About a month ago it began growing significantly which lead to it ulcerating a few times. During this time it was extremely painful for her to go to the bathroom. She would scream bloody murder and kick her legs. It was so awful for her. We see the pediatric dermatologist at Childrens in Seattle. He had perscribed us Mupirocin to prevent infection. Thankfully her hermangioma began to heal after about a week and all was fine again. We were originally sent to see the plastic surgeon because hers will never fully go away since it is so big on a small piece of skin. The surgeon did not want to take it off since it appeared to go down into her vulva. We had our routine checkup appointment yesterday and the doctors want to begin propranolol. We have an appointment set up in a couple weeks to see the cardiologist and see if Hayden would even be a candidate for the medication. We are extremely torn as to what to do. Her "kidney bean" only seems to bother her when it ulcerates. We had planned on just waiting it out and letting nature take its course since it doesn't impair her any. Then put a plan in place if it begins to ulcerate and cause her discomfort again. After talking to the doctor yesterday and reading everyone's experiences it makes me think twice. I have only been able to find one parents post on an issue with the medication. It turned out to be ok though and they continued. Right now we are just waiting to see how it goes at the cardiologist and make a decision from there.
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Old 11-06-2009, 09:42 PM
LeahTrinh LeahTrinh is offline
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Default Research

Quote:
Originally Posted by Dawn and Baby Presley View Post
oh my god no wonder you are scared!!! even though our daughter started in the hospital, she was never woken for anything..not even a vital check through the night, they kept her on a pulse monitor for my own nerves and thats it...she is now at a double dose and you would never know it...she sleeps throught the night and im talking 12 hour stretches!
Do you have all the info on Propranolol?? if not i can send you the research thats been done thus far if you want?
My daughter goes into peds at our hospital every other day just to have her blood pressure taken and her glucose checked, and she has been for the most part consistant!
assuming that your child is in perfect health otherwise, i wouldnt worry to much, but im not a doctor, im just speaking from my own experiance and all the other moms i have talked to..I have researched this for a long time, and i wouldnt have gone this route with all those complications that Dermatologist explained to you! anything is possible but like i said in my research over the months, i havent heard of a case yet with those results.
Take a deep breath and relax, im here for ya, i know how scary it can be, going in there room through the night to see there little chest go up and down..believe me i have been there, but its been over three weeks for us, and now its like giving her any other medication, and the scare is slowly leaving..it was just the unknown that scared me..but seeing her H shrink so quickly is enough to take the scare out of me!!
thinking of you
Dawn
Would you please send me the info you have on this new drug. Thank you dazee777@yahoo.com
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  #10  
Old 11-12-2009, 12:22 PM
AnnA AnnA is offline
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My son, 61/2 months old, is on propranolol. Unfortunately he is not sleeping through the night due to months on steroids, he is still trying to work out a schedule but our doctor just told us to take the medication with food b/c it could cause low blood sugar but after that there was no concern. From what I understand the propranolol is out of their system within 6 hours.
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