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  #1  
Old 05-25-2010, 03:02 PM
jkmorgan333 jkmorgan333 is offline
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Default new here and starting propranolol

Hi, I've commented a few times on people's posts, but I've never formally introduced myself. I'm Jen, and my daughter, Emme (pronounced Emmy), is almost 11 months. I delivered Emme one month early due to pre-e and she had two tiny little red spots behind either ear that looked almost like some type of forceps mark (there were no forceps used in her delivery). Turns out those little marks were hemangiomas. She also has a stork bite on the back of her neck in her hairline. The hemangiomas are now about the size of a dime and grape and stick out as much as you would expect a dime and grape to stick out if they were on the side of your head.
We've had MRIs and cat scans to ensure that there were none on her brain, and fortunately one is only a surface hemangioma, and the other, while compound, does not extend into her skull.

We started a very low dose of propranolol today. From reading others' posts Emme's medicine treatment almost seems too informal. I got a call from our derm saying her cardiologist said that her heart could handle the med and that he had called in a script for us to pick up at our local pharmacy. We have to go see him in a week for a glucose test and BP measurement. The pharmacist seemed to think i didn't know what I was talking about when I told him it was for hemagioma treatment, and when I asked about giving the meds with food he said it wouldn't affect glucose levels, which is contrary to everything I've read including the hand out the pharmacist gave us. It says that glucose levels are affected more in children than adults with propranolol. The bottle does not say it needs to be taken with food, though, which I thought was weird.

Anyway, I gave it to her with food just to be sure and will do so again tonight. I'm assuming that because he is starting her on a low dose and will increase the dosage with time is the reason we aren't getting her sugar and BP monitored today. Has anyone else's experience been this informal? I feel like the doctor is trusting me with a lot and it makes me a little nervous.
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Old 05-25-2010, 05:14 PM
tlampley3 tlampley3 is offline
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my dd started a week ago on a very low dose. she wasn't hospitalized to start either. our dr is increasing the dose slightly each week. i was a little nervous about the informality also, but she seems to be doing fine. he recommended waking her at least every 3 hours to feed. i really don't think it is necessary from reading others experiences, but we are being overly cautious for now. either way, we have noticed a HUGE difference in just 1 week. she is also using timolol, which is a topical form. good luck and let us know how things go!
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Old 05-25-2010, 05:18 PM
tlampley3 tlampley3 is offline
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also, how old was your daughter when you did MRI?
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Old 05-25-2010, 07:33 PM
tlampley3 tlampley3 is offline
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they are wanting to do an MRI on Livy to see if there are any internal hemangiomas or vascular abnormalities. i am afraid to put her under so young! as of right now we are trying to wait until 6 months. did they have to put her under at 3 weeks?
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Old 05-25-2010, 08:57 PM
jkmorgan333 jkmorgan333 is offline
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No, she wasn't put under for the ultrasound on her head. It was very painless; really it was exactly like an ultrasound on your belly when you're pregnant.
She didn't get an MRI until she was 8 months old, and they did put her under, but she wasn't on any breathing apparatus. She was breathing on her own. I was nervous, and I definitely would have been even more nervous if she were younger. I understand your desire to wait until 6 months.
An ultrasound on Livy would probably be fine though. Has your doctor suggested that as a possibility?
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Old 05-25-2010, 10:12 PM
tlampley3 tlampley3 is offline
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no, he hasn't. i didn't realize that was an option. i will have to ask about that! do you remember how long she was under for the MRI?
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Old 05-25-2010, 10:53 PM
abatie abatie is offline
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I know that you are worried about putting your child under. I would like to give my experience with this. My daughter was sedated to have an echo. done at 6 months. I was extremely nervous but it turned out well. I was able to hold her while they gave her the medicine and then I got to hold her and rock her while she went to sleep. I laid her on the table and was as close to her as the people doing the procedure. It was hard to see her like that but I know that it was the best thing we could have done because without it we wouldn't have found the three atrial septal defects.
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Old 05-26-2010, 12:58 AM
lpm lpm is offline
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Regarding the MRI -

My youngest had an MRI on her head at 2 months. She was sedated, not under GA. She started to wake up and move, so they gave her more but she still was half awake, so they finally put the sedative in the IV. She did just fine with the sedative. If they are doing an MRI on the head, they may need to do it "with contrast" (or it will be tough to define the limits of any hemangiomas).

They used ultrasound on the rest of the body to check for internal hemangiomas. Good luck.
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Old 05-27-2010, 01:28 PM
jkmorgan333 jkmorgan333 is offline
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Emme was not sedated for the echo on her heart or the ultrasound on her head. She had an echo when she was 2 days old, when she was 4 weeks old, and again when she was 6 months old (she has a hole in her heart). The only sedation she had was for her MRI and I think it was just a version of codeine and there was no IV, fortunately. From start to finish she was under for probably 45 minutes.
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