Infantile hemangioma

[ShelbyLC]

mtmnleg - Twins are great! Came home from the NICU last week after 51 & 54 days. Of course they both have somehow caught colds now so off to the doctor in the morning. I do appreciate the birth mark, though - makes keeping up with who is who much easier!

Sorry to hijack the thread

 

[staralfur]

https://babyandbump.momtastic.com/baby-club/281716-strawberry-birthmarks-2.html

This is an old thread where I talked about what my dr told me about them. What sun mentions about the 5/9 rule is what my dr said as well. And had forgotten I have a pic of Megans on this thread!

Thanks! That 5/9 rule is interesting. I'm glad we started on the propranolol now that I see only 50% are gone by 5.

 

[JessPape]

I knowthis may sound odd... But are you planning on being a stay at home mom?Maybe read up on elimination commonuication (EC'ing - there some post in the natural section about it). (basicly not using a diaper unless ur out and about and need too). this could keep irration down, and mean no beta blocker? but it is a lot of work.

 

[ChesMik4eva]

My aunty'd daughter who is 2 weeks older than my LO has quite a large one in her forehead. It started out as a small spot and quickly grew very large and raised. I don't think it's causing any problems but it is hard as most people think she's smashed her head open. They are putting lots of head bands on her

Don't know of the treatment but they aren't doing anything about it right now.

 

[DominoSpooky]

My daughter has one on her left cheek just under her eye. It is quite large and raised. We are under great ormonds street hospital in London who have a fantastic birthmark unit. Their website has masses of information on birthmarks. We were offered propanolol as a treatment but decided against in on the grounds of the possible side affects, having to wake her for a feed day and night and the lack of research into long term effects. The team at GOSH said it will fade and probably disappear by the time she is 5-7 years old. We have another appointment with them in early February to see of it has changed at all. I think hers has got smaller but only time will tell. Everyone has to make their own decision on what course of action to take based of the facts you are given. Another great website is the birthmark support group (they are also on Facebook). Xxx

 

[Bababall]

Darcey has a hemangioma on her nose. There was nothing at birth, it looked like a possible bruise which I put down to ventouse delivery. By 3/4 weeks it's was bright purple and getting bigger. At 6 weeks we saw a dermatologist who worried us. The hemangioma was in a dangerous place, it is inside her nose as well and was starting to ulcerate and block her airways. We started treatment immediately. We were told if it was anywhere else on her face it wouldn't be treated.
She gets propranolol twice a day and has done now for 10 weeks. It hasn't gotten smaller yet but has definitely faded and more red than purple. It also stopped growing which is amazing considering how quickly it was spreading. Even more importantly, the inside of her nostrils are clear and it has stayed flat. We were told that 3 months was a stage of rapid growth so the fact that her nose hasn't become raised gives us hope that there'll be no surgery in the future

 

[XJessicaX]

Hey guys,

DD1 has a massive strawberry birthmark on her lower spine. Had multiple tests and scans just to check it hadnt tethered the spine but she's absolutely fine, its purely cosmetic.
We started 6 months ago a beta blocker topical treatment on it called 'Timoptol-xe' its actually an eye drop but its virtually rid her of the birthmark already!
This is the birthmark at a month:
https://i892.photobucket.com/albums/ac126/Jessicaroe1/27thJune2011.jpg

I havent got a photo of it now but its gone back to what it started out like so it looks like this:
https://i892.photobucket.com/albums/ac126/Jessicaroe1/3rdJune2011.jpg

 

[JenniferAnn]

Hey guys,

DD1 has a massive strawberry birthmark on her lower spine. Had multiple tests and scans just to check it hadnt tethered the spine but she's absolutely fine, its purely cosmetic.
We started 6 months ago a beta blocker topical treatment on it called 'Timoptol-xe' its actually an eye drop but its virtually rid her of the birthmark already!
This is the birthmark at a month:
https://i892.photobucket.com/albums/ac126/Jessicaroe1/27thJune2011.jpg

I havent got a photo of it now but its gone back to what it started out like so it looks like this:
https://i892.photobucket.com/albums/ac126/Jessicaroe1/3rdJune2011.jpg

Wow that's a great change. I got that medicine yesterday and started it. How long till you saw slight improvement? What options did they give you for her did they say that medicine will help it to go away? The dr told me that it might not prevent it from growing but then told me it has the same effects as laser. So I put it on and rub it in is that how you apply it?

 

[StaceyKor]

Hey guys,

DD1 has a massive strawberry birthmark on her lower spine. Had multiple tests and scans just to check it hadnt tethered the spine but she's absolutely fine, its purely cosmetic.
We started 6 months ago a beta blocker topical treatment on it called 'Timoptol-xe' its actually an eye drop but its virtually rid her of the birthmark already!
This is the birthmark at a month:
https://i892.photobucket.com/albums/ac126/Jessicaroe1/27thJune2011.jpg

I havent got a photo of it now but its gone back to what it started out like so it looks like this:
https://i892.photobucket.com/albums/ac126/Jessicaroe1/3rdJune2011.jpg

Was just reading through this thread. Just wanted to say that is absolutely amazing. What a difference. Xx

 

[XJessicaX]

Jennifer- when we started it wasnt available or widely known! My husband is a scientist so did a lot of research into it and then came across a study where the topical treatment was used instead of the oral beta blockers. Luckily our local hospital is Addenbrookes which is a vast research hospital and the consultant we saw was very interested in my husbands findings. So we started the treatment almost as a part of a study! Was 2 weeks before my husband and I were questioning whether we thought it was improving already! Maybe a month before we were sure that it was dramatically helping and its just slowly flattened out and reduced in colour. We apply 4 drops to her back and wipe it over waiting for it to absorb and we do this once a day.

 

[JenniferAnn]

Jessica I truly love the improvement on her! The dr I saw was trying to still push the oral med the beta blocker but I just don't know.. I really hope I get the same great results on my sons face as you got.

 

[XJessicaX]

Ive just emailed my OH asking him for the research studies on the topical treatment. I will post them once he gets back to me. Maybe you could show your doctor and suggest an alternative treatment for the hemangioma.
Laser treatment is also another option but I think its offered to older children.

 

[Bababall]

Jessica that's amazing. What a result! Id be really interested in seeing your research. My gp thought it was nothing, only when I paid to see a dermatologist did we get anywhere. But she didn't give us any alternatives to propranolol. Another gp who gave her vaccines couldn't understand why she was on it, it's so unheard of here!

 

[Mrs Mc]

Keeping an eye on this thread as my DD1 has one on her labia. GP told us it would eventually disappear.

 

[_Nell]

My daughter is 9 weeks, she has one in the middke of her forehead that is now raised and pencil eraser sized, about 7 or 8 mm.
She has another tiny one on her labia and her rib cage too.

I worry about them a lot for her, they are cosmetic but i just hope the face one goes before school age for her.
I'm in the uk and we saw a dermatologist who would not offer us treatment for the lack of severity of her marks. We were told the topical treatment thry have since found needs to applied at doses sufficient to get into the blood stream to work so the effects and risks are comparable to the oral meds ie not warranted unless there are other health risks from the marks.

I feel so sorry for these little babies, i hope the all heal well

 

[XJessicaX]

I am having to email people the studies as they are files rather than internet links. I am not sure without copy pasting how to get them on here lol

 

[staralfur]

Thanks for the info on the topical treatment, Jessica. I'll ask my doctor about it when I go get this prescription refilled. We're finding the oral propranolol to be a bit of a pain...she's just so interested in what it is that she's always grabbing at the syringe. She's covered me in it a few times and it's incredibly sticky.

JessPape- I was a SAHM for 6 months but am now back at school and working a couple shifts a week, so unfortunately I don't think that's an option for us. Thanks for the suggestion though.

I really hate having her on meds but I do believe it's necessary at this point. I'll take a picture of her bum today.

 

[staralfur]

Bits of cream left over from last night, but you can see the spots where it's totally raw.

https://i1275.photobucket.com/albums/y450/aimelaira/6A0F23C3-F2A4-4ECA-B2DC-F45A3FC002E9-11273-00001B8013E6D418_zps6033a401.jpg

 

[ShelbyLC]

Ouch! Poor baby I hope she gets some relief soon!

 

[DaisyBee]

Oh my goodness!! Poor girl! I really hope the beta blocker helps her

And I agree that naked butt time is a good idea!