Propranolol for haemangioma

[Catarinah]

Just wondering if anyone here has any experience of propranolol for treating haemangioma? My baby boy started on the medication yesterday to treat 2 haemangiomas he has that appeared around 4 weeks old, he's now 12 weeks. One of his haemangiomas is behind his head which we weren't concerned about, but the other is on his upper lip which could eventually cause feeding and breathing issues - it has been growing quite quickly which was causing a lot of worry. So far he's only had 1 days worth of propranolol (in 3 intervals at half the dose he will be on next week) and i think his haemangiomas may already look less red. He did however have a rather disturbed sleep and appeared to be having nightmares (crying in his sleep) which wasn't nice to hear/watch. I know long term this is the right route but has anyone else been through this? Thank you

Hi OP- not me personally but a friend whose baby had a big one on his cheek that was spreading. The treatment was extremely effective and it has practically gone. Took a fair few weeks if not months. No side effects.

My dd has/d a haemangioma on her nose.

She also had a hernia and was born at 30 weeks so she didnt receive propranolol treatment until she was 3 months old, by which time it had grown to cover her whole nose.

Your ds has started treatment early which is fantastic.
My dd was fine on propranolol. She did not have any side effects at all. I can't remember when her treatment was stopped as she is 5 now. I think it may have been around a years worth of treatment.

Unfortunately my dds haemangiona was very aggressive and she requires ongoing plastic and laser surgery but the propranolol was a great treatment , it shrunk the haemangioma down rapidly and the redness blindness of the veins underneath faded aswell.

I wish my dd could have started it earlier, then she might have been saved the further surgery.

Good luck

Sorry, that should gave said; "blueness of the veins..."

One of my DC started propranolol for a different problem at 2 weeks. He was on it on and off for 5 years. It had no impact on his appetite or development. Not surprisingly his hands and feet got colder in cold weather and I had to be mindful of tights and gloves. He was more irritable ie quicker to cry and shout while he was on it.

Thanks for replying so quickly. We actually ended up going down the private route as our GP said it could take 16 weeks to see a paediatrician who "probably won't be able to do anything" and we'd have to just wait for it to shrink, I wasn't happy with this having researched a lot about propanalol online, the private dermatologist ended up referring us to Alder Hey. Do you think the nightmares last night may just be a reaction to the medication and may stop as his body gets used to it? I know it's really early it's not even 24 hours yet since he started.

I dont know about the nightmares, my dd never had any. Babies develop so quickly, could be a coincidence?

My dd is under GOSH. Good call on not relying on the gp.
My dd only got referred to GOSH as the NICU opthamologist knew the GOSH dermatologist. The NICU regular staff weren't going to do anything and didn't even know what it was. If we had left it to them she would be in a worse situation.

As it is dd has already had rhinoplasty at 4 years old. I think there should be more education around this type of birth mark as some haemangioma do not shrink and some haemangioma leave serious disfigurements.

Hopefully you will avoid this for your ds.

Nightmares and disturbed sleep are common side effects of propranolol, so it's entirely possible that your ds is experiencing side effects...or he could just be being the baby that he is and experiencing sleep regression. Unfortunately, at 12 weeks, it's impossible to know for sure.

No experience of that medication. But just wanted to say that I had a haemangioma on my upper lip as a baby and through my childhood. It used to cause nose bleeds too. It did stop growing after a few months without medication ( I don't think they did it then). It did not shrink though. I had two surgeries to remove it, some laser treatment and some medical tattooing. It looks pretty good now. You can't notice but it's a long road.

My LO started on propranolol for a head haemangioma at 10 weeks old she is two weeks away from finishing her six month treatment course. The difference in it is amazing. It was very large and she’s quiet small for her age so the consultant couldn’t put her dose up too much so it hasn’t got rid of it completely but it’s far better than it was. She did have what seemed to be vivid dreams when it started but that all stopped fairly quickly after the first week or two. It would be worth mentioning to your consultant when you meet them next as they are always keen to no any side effects so they can look at adjusting the dose. At every appointment our consultant asks about dreams as sleep disturbance is one of the most common side effects.

Sorry to hear about the struggles your dd has had @happysunr1se .

Believe it or not I had 3 different GPs and 2 lactation consultants telling me it was "just a sucking blister" and the GP in the ended praised me for not accepting what I was being told. I hope he's started propranolol early enough (and hopefully it'll work) so that he won't need further treatment later on. @triedandtestedteacher youre right it probably wasn't available then, I think they started using it for his purpose in 2008.

My little boy has developed this at around 4 weeks! Had a telephone call with a GP today who said to just keep an eye on it?? Health visitor and GP nurse also said the same. I am going to get a second opinion privately. What do you think? How does this compare to those of babies on medication for theirs? I mentioned that and was told there’s no need right now and see how and if it develops.

imgur.com/a/geoawrM

That looks similar to the one our little boy has at the back of his head which we weren't concerned about compared to his lip which is... or was (I hope), growing quicker. I personally would go private just because of its location. If we hadn't gone private we'd still be waiting for him to be seen for another few months whereas now he's started treatment. How old is your lo? Ours appeared first at 4 weeks too.

He’s 5 weeks today 😞 did it keep growing? I don’t even know where to start as I’m assuming all docs are horrendously busy right now due to Covid. I’ve enquired with Nuffield and waiting to hear back. We are actually isolating due to vulnerabilities so hoping for a virtual consult and prescription if required. Which docs did you go with privately?

Yes both kept growing unfortunately. It's unclear when they stop growing because some sites say 9-12 months and some say few years, but, they all say that most do shrink back eventually. Nuffield is where we went too, they were really good, we saw the dermatologist and he referred us to Alder Hey, however due to Covid that appointment was cancelled but I spoke to the specialist over the phone and emailed over some pictures and she arranged for us to go in to have his health check and weight before prescribing.

@zoezoeok89 also don't worry, he's only 5 weeks, I don't know if they'd even prescribe him anything at that age because it depends on their weight. I'd go private just to get the ball rolling but again you may not have to wait as long on NHS where you are

God it’s all so stressful! As GP was not concerned I called the hospital directly. For a “non urgent” referral which is what this would be apparently, we are looking at 40 weeks! Private it is... hoping this doesn’t grow too much or spread!

Best of luck with your little one!

Nuffield are saying they wouldn’t see a child under the age of 3!

@zoezoeok89 yes GP also told be "its not urgent". Where abouts are you? We went to the Nuffield in Chester. My son is 12 weeks now and only just started treatment but when we went to Alder Hey she did say that he is now the right weight/age to start treatment so there must be an age that they can't give treatment too. My lo was born at 37 weeks weighing 5lb5oz (haemangiomas are more common in low birth weight and premature babies).

Oh and thanks for the good luck :) @zoezoeok89 I get your stress I've been worried sick and even now still worried!

Just wondered how you got on with this? We are just starting with propranolol and keen to hear how it went

@Sunshine924 our son is now 3, and was on propranolol for a little over a year. Stopping it was a trial and error as it would start to grow again so had to continue until it didn't pretty much. He has hardly any noticeable mark on his lip, swells slightly when poorly / if he's screamed / crying, but we're very happy we got it treated. Hope you also have a good experience

My daughter had propranolol for a haemangioma from 7 months to over 2 years old. It worked very quicly with no side effects but I was trial and error weaning her off it as it kept getting bigger again. They were gone by 3 years though.