Propranolol

Sunshine924 · 2023-06-03T08:11:42+00:00

My baby of 4 months has been prescribed propranolol for a haemangeoma on his eye. I’m interested in others experiences. We’ve been told he has to have it 3 times a day 8 hours apart, and he can’t go for more than 6 hours without eating. He used to be great sleeper so now we are waking him in the night to give him the meds and a feed - resulting in him being awake for hours and not wanting to go back off. Anyone else managing this? Also worried about side effects - not seen any yet but he’s on a half dose

Maloneyb · 03/06/2023 11:18

Oh I feel for u!
have u tried doing it all in the dimmest light possible? And not speaking?
did the doctor give u any advice ? If not I’d go back and find out what they suggest x

Original poster

Sunshine924 · 03/06/2023 11:28

Yes did it in semi darkness and avoided even eye contact! I’m hoping that as he gets bigger we might have option to give more in the day and not wake at night?!

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madeleine85 · 03/06/2023 16:33

My little one has a large segmental haemangioma on his cheek/neck area. We’ve been on propanalol since he was about 6 weeks old, he’s now almost 10 months. I found propanalol easy to give until about 2-3 months ago, and we’ve had to resort to hiding it in bottles now. The most annoying thing I’ve found is we can’t give it if he has any kind of sickness (throwing up or chest issues from a cold) which I feel like 1 month of every 3 we just can’t give him anything and I feel like we’re not doing as much as we could to help the mark go away. Re. Side effects when he was a baby he did get the cold hands and feet, but now I don’t notice anything. I know an adult who takes propanalol for public speaking anxiety and she told me it just makes her very relaxed and “zen” 😂. Our little guy is a very happy relaxed baby, so maybe that’s it? It relaxed me knowing from an adult how it made them feel. His mark was tiny and faint at birth, then around 2-3 weeks got large, very angry and red/purple, and awoke significantly. At about 3 months it looked worse, in that one of the key stages of reduction is that the mark gets defined edges, then starts to reduce. So being defined Is actually good, when that happens, it’s a positive. Now it’s definitely fading, and is much better. I’m surprised about the eating every 6 hours advice, we were not asked to do that. I was told to make sure he has at least 2oz of milk 20 mins before a dose of medicine so he isn’t in the throw up danger zone, and has something in his belly. I’ve never woken him for the reason you mentioned. Happy to answer any other questions you have!

madeleine85 · 03/06/2023 16:35

Oh and when we did 3x a day we did 6am, 2pm and 10pm (ish). We were told every 6-8 hours for dosing. We did go down to twice a day recently which is much easier, but was mainly as our childcare wasn't comfortable giving it.

legoagain · 03/06/2023 16:50

My DS had propranolol and 2 other heart medications from birth. Our schedule was 6am, 8am, 2pm, 4pm, 10pm and midnight so often while he was asleep. We found he would take it without waking if it was given via syringe into his cheek. We did this for many years with few problems.

Original poster

Sunshine924 · 03/06/2023 17:07

Did you leave them lying down and give it without waking? Did you not need to do a feed?

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Original poster

Sunshine924 · 03/06/2023 17:09

madeleine85 · 03/06/2023 16:33

My little one has a large segmental haemangioma on his cheek/neck area. We’ve been on propanalol since he was about 6 weeks old, he’s now almost 10 months. I found propanalol easy to give until about 2-3 months ago, and we’ve had to resort to hiding it in bottles now. The most annoying thing I’ve found is we can’t give it if he has any kind of sickness (throwing up or chest issues from a cold) which I feel like 1 month of every 3 we just can’t give him anything and I feel like we’re not doing as much as we could to help the mark go away. Re. Side effects when he was a baby he did get the cold hands and feet, but now I don’t notice anything. I know an adult who takes propanalol for public speaking anxiety and she told me it just makes her very relaxed and “zen” 😂. Our little guy is a very happy relaxed baby, so maybe that’s it? It relaxed me knowing from an adult how it made them feel. His mark was tiny and faint at birth, then around 2-3 weeks got large, very angry and red/purple, and awoke significantly. At about 3 months it looked worse, in that one of the key stages of reduction is that the mark gets defined edges, then starts to reduce. So being defined Is actually good, when that happens, it’s a positive. Now it’s definitely fading, and is much better. I’m surprised about the eating every 6 hours advice, we were not asked to do that. I was told to make sure he has at least 2oz of milk 20 mins before a dose of medicine so he isn’t in the throw up danger zone, and has something in his belly. I’ve never woken him for the reason you mentioned. Happy to answer any other questions you have!

Thanks this is all really helpful! I will ask the Dr when we have a review call again about the timing of doses and feeding. Good to know it could eventually go down to twice a day (can’t bear the thought of doing the night one until he’s 1 and a half!)
also reassuring re side effects! I’d read about night terrors and sleep disturbance so was worried about that

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legoagain · 03/06/2023 17:17

It was only a few mls and he slurped it enthusiastically while lying down asleep. We must have been told to do it this way while he was in hospital. We never had to worry about feeds, which is a good thing seeing it was 6 times a day.

Original poster

Sunshine924 · 03/06/2023 17:38

legoagain · 03/06/2023 17:17

It was only a few mls and he slurped it enthusiastically while lying down asleep. We must have been told to do it this way while he was in hospital. We never had to worry about feeds, which is a good thing seeing it was 6 times a day.

I might try this tonight!

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Usernameunavailable100 · 03/06/2023 23:24

After a few months our consultant said it would be fine just to give it with little ones three main meals. Was such a relief as it was initially 8 hourly which meant waking her up. In terms of side effects, she def has cold hands and feet and it did seem to disrupt her sleep for a few months, but of course that could have been a coincidence. Been on it a year now and the difference in her birth mark is amazing.

Original poster

Sunshine924 · 04/06/2023 07:01

Usernameunavailable100 · 03/06/2023 23:24

After a few months our consultant said it would be fine just to give it with little ones three main meals. Was such a relief as it was initially 8 hourly which meant waking her up. In terms of side effects, she def has cold hands and feet and it did seem to disrupt her sleep for a few months, but of course that could have been a coincidence. Been on it a year now and the difference in her birth mark is amazing.

Thats good to know. What hospital were you under? We are on 8 hourly too so are waking him

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Original poster

Sunshine924 · 06/06/2023 14:41

I’m really struggling with this - my boy has adapted well to the new routine but I haven’t. I’ve developed insomnia from being on edge waiting for the alarm to go off and am now lying awake most of the night whilst he sleeps soundly next to me
:(

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Mamamia633 · 31/01/2024 13:57

Hey @Sunshine924 just wondering if you have an update? Did you continue the propranolol treatment?
We have a similar situation and I’m terrified about my daughter going on beta blockers but the location of her haemangioma (lip) is risky as it is growing and affecting her lip function and shape….

Original poster

Sunshine924 · 31/01/2024 16:27

Mamamia633 · 31/01/2024 13:57

Hey @Sunshine924 just wondering if you have an update? Did you continue the propranolol treatment?
We have a similar situation and I’m terrified about my daughter going on beta blockers but the location of her haemangioma (lip) is risky as it is growing and affecting her lip function and shape….

Hello! Yes we did. And thankfully things got a lot easier. Soon after the Dr agreed we could switch to two doses - 6pm and 6am and said as soon as he was eating 3 meals a day we could drop night feed if he didn’t wake for it. So about 7/8 months we did that (we started him on solids at 6 months and he loved his food so we moved quite quickly with it). He’s still on the propranolol now (he’s 1 this week) and probably will be for another 6 months. But the Haemangioma has pretty much gone and his eyesight is fine so we are glad we did it.

what are you terrified in particular about?

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Linensun · 10/06/2024 22:44

Hi, thanks for posting, it’s reassuring to hear how others are getting on.
my six month old has been on for about two months now to help eyelid haemangeoma.
it has visibly reduced as was impacting vision before, now looks the same as the other normal eye.
i have been giving every six hours which helps with not waking for meds, 6am, midday and 6pm. My doctors advice was every 6-8hrs.
the only side effect we’ve had is disturbed sleep, prior to the medication she was sleeping well, with only one wake in the night, now it is five+. I’m hoping it improves with time!
with the two doses a day, did the amount of medication increase with each one?
i’m just holding onto the fact that another six months of this and then her vision will have developed as it should have and her eyelid looks no different. Short term sacrifices for lifetime gains!😴

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