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  #1  
Old 08-17-2009, 05:35 AM
MyCheekyTwo MyCheekyTwo is offline
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Default Deep hemangioma experiences please

Hi everyone,

First post .

My 3 month old son has a deep hemangioma located on his left eyebrow. We have been to see a paediatric surgeon who has referred us to a paediatric surgeon who deals with birthmarks. We are seeing her tomorrow.
The birthmark has been acting strange the last 4 or so days! It started approximately 5 weeks ago with a blue mark that looked like a bruise, grew three times it's original size in 10 days (ended up being 1.5cm in diameter after only a couple of weeks) and got to be approximately an inch in diameter a week ago.
Now I don't know if it's just my eyes or wishful thinking but for the past 4 or so days it looks smaller? It's probably between 1.5cm - 2cm again.
It has lightened in colour - well it changes colour actually. Sometimes it looks more blue/purple and darker and other times it looks skin coloured or grey. It looks patchy grey.
It also seems to be changing size depending on the time of day. He woke up yesterday after a long nap and it wasn't as hard or big as it was, and it was skin coloured. It was hardly noticeable actually. It was quite flat. Then it got a bit bigger and harder as the day progressed.
Is this normal? Do you think this could be signs that it is involuting or at least stopped growing? (It hasn't seemed to grow in approximately a week to a week and a half). I'm just reluctant to believe it because he hasn't had it for very long so I was assuming it would grow for a good few months yet.
My daughter also had one but a strawberry one and hers disappeared quite fast. She's 2 in 9 days and hers is hardly visible now but it started disappearing when she was quite young.
I know you are all not doctors, just looking for some advice based on experiences. I've been trying to take photos to see any differences but I can't seem to tell too much in photos.
Thanks a lot.
Ashley.

Edited to add - My mum says it looks smaller to her too and lighter in colour.

Last edited by MyCheekyTwo : 08-17-2009 at 05:37 AM. Reason: Adding something.
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  #2  
Old 08-17-2009, 06:38 AM
nickbar nickbar is offline
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It is very possible involution is taking place.

Please feel free to email me if you would like
and do let us know what the surgeon says.
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  #3  
Old 08-20-2009, 11:46 PM
MyCheekyTwo MyCheekyTwo is offline
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Hi,

Thanks for your reply nickbar.

The surgeon has decided we should start my son on Propanolol. We have just got all the tests done and we are just waiting for a phone call to start the drug.

I'm a little scared though. After talking to a lady about her baby's experiences on it and after reading threads on here I'm getting scared. The surgeon said the only side effect is that if my son gets gastro and misses a feed then his blood sugar could drop. But I've read many side effects and "close calls" with this drug - babies being rushed to emergency etc.
I've also heard a lot of babies are admitted to hospital for the first few days to be monitored. We were just told to buy the drug and start when they rang - so no slow increases in the dosage etc.
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  #4  
Old 08-21-2009, 01:42 AM
agbaby agbaby is offline
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Quote:
Originally Posted by MyCheekyTwo View Post
Hi,

Thanks for your reply nickbar.

The surgeon has decided we should start my son on Propanolol. We have just got all the tests done and we are just waiting for a phone call to start the drug.

I'm a little scared though. After talking to a lady about her baby's experiences on it and after reading threads on here I'm getting scared. The surgeon said the only side effect is that if my son gets gastro and misses a feed then his blood sugar could drop. But I've read many side effects and "close calls" with this drug - babies being rushed to emergency etc.
I've also heard a lot of babies are admitted to hospital for the first few days to be monitored. We were just told to buy the drug and start when they rang - so no slow increases in the dosage etc.
I am sharing my personal experience with you ....not urging you to use ropranolol as each individual case is different...

I started my daughter who was 2 months on propranolol more than 2 months ago and she is doing fine. After much debate, research and discussions with our DR, we overcame our concerns about such a young baby medication. We had our daughter go through consults and tests with specialists to ensure there was no underlying conditions which suggests that she should not be taking the medication.

Our DR has told us that missed dosage is not a concern (as in the case of steriods)...if we as parents notice changes in heart rate and temperature (which we monitor 1 hour after the drug), we are suppose to stop giving the next dosage to prevent low blood pressure. So far so good for us. Also, at the last DR visit, DR said there is more comfort using propranolol to treat H and the protocol is becoming more lax than before....

let me know if you have any questions or concerns.
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  #5  
Old 08-21-2009, 02:16 AM
MyCheekyTwo MyCheekyTwo is offline
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Thanks for your reply.

I have also read lots of good stories about this drug. I'm just a bit concerned that we aren't being admitted to hospital for the first 48 hours nor are we getting any tests done to make sure everything is ok until one week after starting it. I also don't think the dosage is being increased slowly. It says on the prescription that the dosage is 2mg. Not sure how often that is given as it doesn't say.

agbaby - How do you test your baby's heart rate at home?

We are actually part of a trial at the hospital. Half get propranolol and half get a placebo, although we are definitely getting the drug because of it's location.
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  #6  
Old 08-22-2009, 02:39 AM
agbaby agbaby is offline
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different hospitals have diff. protocols. does your hospital have one for propranolol?

we had cardiologists and paetrician (who ordered ultrasounds on liver etc) prior to start of P. We also took heart rate, blood pressure and temperature as baseline right before we started first dosage so we would know if any of these vitals changed due to drug.

We first administered drugs at home (not at hospital) and drug was gradually increased to 2 mg/kg (some hospitals have gone up to 3 mg now) over course of few weeks. Vitals such as blood pressure, temperature, heart rate 3 times a week at hospital (by nurse). 1 hr after each dosage, we monitor heart rate (using stethescope) and temperature at home. This is within our control and therefore, not as concerned about given drug at home.

We are starting to go to the hospital once every month now.
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  #7  
Old 08-23-2009, 03:33 AM
MyCheekyTwo MyCheekyTwo is offline
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I think we are the first ones to receive propranolol at this particular hospital. I could be wrong though but I assume this because we are a part of their trial of the drug.

I went to the pharmacy to get the drug made up today. Hopefully pick it up tomorrow or the next day. We should start then too (when the hospital rings us).

We have already had an ECG, chest ultrasound, blood pressure taken, and blood test done. We go back one week after we start the drug where I assume we will get more tests done. They didn't say anything about checking heart rate or temperature after administering the drug. I'm not sure how many times after we have to see them, only know about that visit one week after starting it. He is being given 2mgs a day and that is the most he will ever have I'm told - so no increase in it, we are starting on the full amount. It has been worked out according to his weight - he is 5.5kgs.

I don't have a stethoscope, but I will be able to take his temperature.
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  #8  
Old 08-27-2009, 12:07 AM
nickbar nickbar is offline
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I would encourage you to insist that he is monitored for 48 hours.

Corinne
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  #9  
Old 08-29-2009, 10:35 AM
MyCheekyTwo MyCheekyTwo is offline
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Bit of an update -

I couldn't get the drug made up at that particular pharmacy as they don't make drugs up there. So I'm going to a pharmacy that does tomorrow.

I've already received a phone call to say start it when I get the drug. I asked her a few questions. I asked why we weren't being admitted for 24-48 hours when starting the drug. This was her answer - "Literature suggests to keep them in the hospital for 24 - 48 hours. We did this for the first 2 children we gave the drug to and they weren't even monitored in the hospital. We now have 20 children on the drug and none have had any side effects so we feel that it is not needed".

I asked whether we could be admitted but she said they couldn't admit us to our local hospital because they have no say there so we'd have to be admitted to the Sydney Children's Hospital which is a 2 hour drive for us. I have a young daughter so this isn't really a good option for us. She said if she did admit us I will have to "pester" the nurses to even get them to monitor him? Strange, but anyway.

I asked about the dosage as during our first phone call she said that it was 2mgs split into 3 doses daily. She said she thought I said 2ml, so it is actually 6mg split into 3 doses daily. Since the pharmacy wouldn't be able to make the drug using the hospital prescription I had to go to my local doctor to get another prescription. He said he'd never written one out so wasn't sure how to write the dosage. The girl from the hospital said it should read - "1mg/kg/day in TDS (three doses?) and then put his weight: 5.5kgs" and they will be able to make it up according to his weight. I really hope they make the drug up with the correct dosage! The girl said to make sure they make it up in mgs and not in mls?

Sorry, no one is probably really interested in all this. But it helps me to write it down. I'm very stressed about all this .
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  #10  
Old 08-30-2009, 12:56 AM
missy missy is offline
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I'm sorry you're stressed!!!

And we are interested... also, this is a very new treatment. The documentation of your experiences will help other parents one day.

If the hospital isn't going to monitor all that well, then maybe it's best she's at home. I mean, you'll certainly watch her. Better than anyone else, I'll bet.

Drop us a note after you;re done at the pharmacy. Let us know what's going on.

Missy
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