Active discussions

Are your children’s vaccines up to date?

Set a reminder

Please or to access all these features

Talk
Children's health

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Original poster

haemangiomas

16 replies

mumof2g1rls · 17/05/2023 18:51

My daughter is 11 weeks old and was born with a haemangioma behind her ear and on her back which is normal of course. However at her 6 week check the dr said the one behind her ear is quite raised and to keep an eye on it, if any more swelling then to call as the fluid could get into her ear or something along those lines. Anyway it's grown a lot in the last 2 weeks so I called the drs today about it who didn't have much to say about it so have put in an urgent request to the paediatricians to see what the steps are and if they need to try and reduce it. Has anyone else's little one had one raised etc? I know they usually go on their own but hers seems to just be getting bigger🤔

haemangiomas
OP posts:
Are your children’s vaccines up to date?
Set a reminder
Original poster
mumof2g1rls · 18/05/2023 00:18

mumof2g1rls · 17/05/2023 18:51

My daughter is 11 weeks old and was born with a haemangioma behind her ear and on her back which is normal of course. However at her 6 week check the dr said the one behind her ear is quite raised and to keep an eye on it, if any more swelling then to call as the fluid could get into her ear or something along those lines. Anyway it's grown a lot in the last 2 weeks so I called the drs today about it who didn't have much to say about it so have put in an urgent request to the paediatricians to see what the steps are and if they need to try and reduce it. Has anyone else's little one had one raised etc? I know they usually go on their own but hers seems to just be getting bigger🤔

Anyone? X

OP posts:
FanSpamTastic · 18/05/2023 01:21

Hi there

I don't have experience of haemangiomas, my dd had a port wine stain birthmark. I found the birthmark support group here really helpful. My dd got referred via the hospital paediatrics team. I would suggest to go via your gp and ask for referral to a birthmark specialist team.

PaddingtonBunny · 18/05/2023 01:41

Our daughter had a raised one on her forehead. It seemed to grow quickly and get redder and then it shrunk and faded when she was about 2.5 years.
We had a referral from our doctor to a specialist to get it checked as it was large and on her face but after examination they left it as they thought it wasn’t causing problems. I understood at the time that laser surgery is a possibility but can also cause scarring.
She has ended up with a bit of a lump left over. I think it’s just fatty tissue. We had a scan done on that when she was about 11 and all okay.
The most difficult thing was comments from strangers when it was at it’s biggest. People can be so thoughtless and rude.
Great Ormond Street have a Birthmark Unit and I think have information on Hemangiomas. They might be able to help with questions for the specialist?
Good luck.

DiabeticFirstBaby · 18/05/2023 01:42

My LG had one on side of her nose near eye, GP said to leave but they are clueless, luckily I did my own reserve and she had treatment. You need to see a paed dermatologist asap as this looks like one potentially growing under the skin (from what I've seen from other posts) Need to get referral from GP- go armed with your info.
There's a really good FB group called Birthmark support group where you will find loads of parents sharing pics and getting advice. Do your research online using the website above but do not just leave it esp as it's growing and getting more bulky. Treatment is either a gel (my LG had) on it or oral medicine based on severity etc.
Hope you get sorted.

bob1985 · 18/05/2023 04:58

Hi op

Firstly congratulations!

We've got experience of these DD was born with 9! Some quite large.

They grew for roughly the first 6-8 months. First of all don't panic, it's unlikely to cause any harm. However, take a referral from the GP to get it checked by a specialist.

We're still under hospital care - DD is 5. We've opted to note treat actively and most are now very faded and shrinking

bob1985 · 18/05/2023 04:58
  • to not
SpringIntoChaos · 18/05/2023 06:11

My daughter had one on her arm...it did grow quite big (about the size and shape of a raspberry...maybe even a little bigger) but started to shrink when she was around 5 and disappeared completely (except a flat, pale pink mark which just looks like a slightly different skin tone in her arm). When she tans this stays pale pink. That is the only sign left of it now. Nothing needed to be done except wait.

Original poster
mumof2g1rls · 18/05/2023 13:58

FanSpamTastic · 18/05/2023 01:21

Hi there

I don't have experience of haemangiomas, my dd had a port wine stain birthmark. I found the birthmark support group here really helpful. My dd got referred via the hospital paediatrics team. I would suggest to go via your gp and ask for referral to a birthmark specialist team.

Thank you for this, I didn't know there was a birthmark support group on here! I'll go take a look, appreciate it! Xx

OP posts:
Original poster
mumof2g1rls · 18/05/2023 14:00

PaddingtonBunny · 18/05/2023 01:41

Our daughter had a raised one on her forehead. It seemed to grow quickly and get redder and then it shrunk and faded when she was about 2.5 years.
We had a referral from our doctor to a specialist to get it checked as it was large and on her face but after examination they left it as they thought it wasn’t causing problems. I understood at the time that laser surgery is a possibility but can also cause scarring.
She has ended up with a bit of a lump left over. I think it’s just fatty tissue. We had a scan done on that when she was about 11 and all okay.
The most difficult thing was comments from strangers when it was at it’s biggest. People can be so thoughtless and rude.
Great Ormond Street have a Birthmark Unit and I think have information on Hemangiomas. They might be able to help with questions for the specialist?
Good luck.

Thank you for this!! They did say that usually these things often are no harm and tend to go down overtime on their own without needing treatment or anything, my other daughters had them but never in this place and they weren't raised however they're just concerned because of where hers is placed! I'm yet to hear back from the doctors today so hopefully tomorrow I'll get the call once they've spoken to paediatrics and take it from there! Xx

OP posts:
Original poster
mumof2g1rls · 18/05/2023 14:02

DiabeticFirstBaby · 18/05/2023 01:42

My LG had one on side of her nose near eye, GP said to leave but they are clueless, luckily I did my own reserve and she had treatment. You need to see a paed dermatologist asap as this looks like one potentially growing under the skin (from what I've seen from other posts) Need to get referral from GP- go armed with your info.
There's a really good FB group called Birthmark support group where you will find loads of parents sharing pics and getting advice. Do your research online using the website above but do not just leave it esp as it's growing and getting more bulky. Treatment is either a gel (my LG had) on it or oral medicine based on severity etc.
Hope you get sorted.

They took pictures of it yesterday at the doctors with measurements to send straight over to the paediatricians so I'm hoping they come back soon with advice or something, I am thinking they'll maybe want to see her in person to assess it, you can very clearly see all the blood vessels running to it now as well and it is quite the lump which has probably double in size in the last 2 weeks! Xxx

OP posts:
Original poster
mumof2g1rls · 18/05/2023 14:05

bob1985 · 18/05/2023 04:58

Hi op

Firstly congratulations!

We've got experience of these DD was born with 9! Some quite large.

They grew for roughly the first 6-8 months. First of all don't panic, it's unlikely to cause any harm. However, take a referral from the GP to get it checked by a specialist.

We're still under hospital care - DD is 5. We've opted to note treat actively and most are now very faded and shrinking

Thank you so much! And thank you for sharing your experience with these! Hoping that we hear back from the paediatrician later today if not tomorrow and see what they say! The drs are just a little concerned because of where it is they said it could interfere with her ear but hopefully that's not the case and we can leave it to do it's own thing! Xx

OP posts:
Original poster
mumof2g1rls · 18/05/2023 14:07

SpringIntoChaos · 18/05/2023 06:11

My daughter had one on her arm...it did grow quite big (about the size and shape of a raspberry...maybe even a little bigger) but started to shrink when she was around 5 and disappeared completely (except a flat, pale pink mark which just looks like a slightly different skin tone in her arm). When she tans this stays pale pink. That is the only sign left of it now. Nothing needed to be done except wait.

My elder two girls both had them at birth too, however they never became raised/swollen like this so I've never experienced this before! I'm hoping it rectifies itself however they are asking advice from paediatricians just due to where it's placed they said fluid can get into the ear so hopefully just need a few checks and see if it's okay to just let it come down in its own time! Xx

OP posts:
AllAboutBread · 18/05/2023 14:25

I randomly had a haemangioma grow, though it appeared as a lump, it wasn't red. It only became apparent that it was a haemangioma after a biopsy. I had it removed via surgery. I was told it could come back, anywhere on my body. This was roughly 5 years ago, I've had no issues since.

Original poster
mumof2g1rls · 23/05/2023 11:06

AllAboutBread · 18/05/2023 14:25

I randomly had a haemangioma grow, though it appeared as a lump, it wasn't red. It only became apparent that it was a haemangioma after a biopsy. I had it removed via surgery. I was told it could come back, anywhere on my body. This was roughly 5 years ago, I've had no issues since.

Wow I didn't know you could just develop them later on in life too! I thought it was just something your born with or appears very soon after birth!! Learn something new everyday!😅 I've still not heard from the paediatricians yet, so going to phone drs again and see if anything's back yet because it's gotten bigger again and it's really hard now😬 top photo is last week and bottom is today

OP posts:
TinyBearCub · 25/05/2023 08:18

Hi OP, my daughter has one just below her eye which was invading her line of sight and paeds were worried it might also affect the eye itself. The treatment was propranolol (a beta blocker, tiny dose) which softened it literally overnight. It then reduced over the course of a couple of weeks and has stayed at a size that, whilst obvious, is not causing her any problems. She was on far too low of a dose sadly, or it might have completely gone, so do weigh regularly if you go down that route.

I believe they ideally need to start treatment in the first three months and lots of paediatricians don't seem to realise this. My daughter was in and out of hospital as a newborn and it was the fourth paeds consultant to see her that made the referral to dermatology. Dermatology rang the very next day and made an appointment for that week! I'd perhaps look up the number for dermatology appointments and ring them and explain how large/location and that you are struggling to get someone to look at it. Worth a try. Or push the gp more. It's a nightmare isn't it! The birthmark was literally the only thing I didn't have to basically diagnose and find the right doctor for myself!

Original poster
mumof2g1rls · 25/05/2023 22:05

TinyBearCub · 25/05/2023 08:18

Hi OP, my daughter has one just below her eye which was invading her line of sight and paeds were worried it might also affect the eye itself. The treatment was propranolol (a beta blocker, tiny dose) which softened it literally overnight. It then reduced over the course of a couple of weeks and has stayed at a size that, whilst obvious, is not causing her any problems. She was on far too low of a dose sadly, or it might have completely gone, so do weigh regularly if you go down that route.

I believe they ideally need to start treatment in the first three months and lots of paediatricians don't seem to realise this. My daughter was in and out of hospital as a newborn and it was the fourth paeds consultant to see her that made the referral to dermatology. Dermatology rang the very next day and made an appointment for that week! I'd perhaps look up the number for dermatology appointments and ring them and explain how large/location and that you are struggling to get someone to look at it. Worth a try. Or push the gp more. It's a nightmare isn't it! The birthmark was literally the only thing I didn't have to basically diagnose and find the right doctor for myself!

I've read a lot online about the ones close to the eyes and causing problems, bless her😞 I heard back from the drs on Wednesday and they said paediatrics are going to be in contact with me themselves to discuss so I'm not sure what the steps are now until I get the call or letter from them! She'll be 3 months on the 2nd of June so hopefully get it soon and find out what's happening! We have the health visitor coming next week to officially weigh her too for paediatrics as she has only gained 1oz in 2 weeks and has dropped in percentiles so they need to find out if her milk isn't agreeing with her or if this is causing swallowing issues because of the ear, hopefully have some answers soon however I think it's her milk as she's cmpa and on aptamil pepti. Xx

OP posts:
New posts on this thread. Refresh page