My 5 Year Old's Hemangioma

[briankeay]

Hello everyone.

I am from Scotland and my 5 year old wee girl has a Hemangioma on here forehead.
We have pretty much been advised since she was small to wait and see if it faded by itself, but it has not really changed in the last year or so.

The doctor is now putting her on a course of beta blockers to see if they make any difference prior to any surgical procedure.

We aren't gettin our hopes up that it will make much difference at this stage; seems like its a little late.

Does anyone know of any success with an older child?
It seems that all the successful cases alluded to here are with young babies.

Thanks,
Brian

[lo1]

Hi Brian

Cant offer much help but thought I'd say hi as we are from Scotland too (nr Aberdeen), where are you?

My Daughter is 2.5yrs and has a large complex hemangioma on her eyelid and head. She was on steroids as a baby for 3mths, which did not work so had her 1st surgery at great ormond street in london. She still attends GOSH and our local hospital but also goes to St John's in livingstone to the laser centre with the view of having laser in the future in addition to further surgery at gosh. Have they mentioned laser to you?

From what Ive heard about beta-blockers they can help, so hopefully it will help you daughter. I mentioned it at GOSH and they do not have much experience of giving them to older children, most are when they are very young.

Good luck and I hope your get the results you are looking for.

Lorna and Abbie

[briankeay]

Hi Lorna

Thanks for the reply
We are in Glasgow and have been going to Yorkhill since she was 6 months.

She should be starting the beta blockers this week.

We haven't had any mention of laser treatement at all, but I will ask when we next see the consultant.

Good luck to you too.

Cheers,
Brian

[lo1]

Brian

Please let us know how your daughter gets on next week.

Lorna

[nickbar]

Any update?

[briankeay]

No update yet sorry, its taken a while for our Consultant to speak to our GP about what is involved.
We only got the medicine yesterday, so I'll update next week with changes if any.

Thanks for the interest

[missy]

Well, please don't leave us hanging next week! I hope you have only positive things to say then!

Missy

[briankeay]

Hi guys, my daughter has been on the propranolol for a week now.
I think her H is getting flatter at the top and its definitely a lot lighter in colour.

She doesnt appear to be suffering any side-effects, we did wonder if it would make her lethargic, so far so good on that front.

I'll post an update next week, when any difference will be more obvious hopefully.

Thanks for the support.

Cheers,
Brian

[claire & eloise]

Hi Brian,
Glad to here your Daughters propranol treatment is going well.
My daughter has a large hemangioma on the side of her face and neck. We live in sunderland (north east) and are currently under James cook university hospital Middlesborough. We are going to be starting a treatment on the 15th april called Bleomycin which is a low dose cancer drug which they inject into the birthmark.( this is the only place in the uk as i know of that offer this treatment the consultant is from south africa) We were given the wait and see option from sunderland but how long have you got to wait? my daughters H came up a week after birth and she is now three and its only shrunk a little. she was on steriods Prenislone) to stop the growth which it did. We were/have never been offered propranol. It was just by chance i saw this treatment on the local news that i pushed for a referal. We have been told that we have an 80 percent of shrinkage which to me is good..
Please let me know how your daughter gets on with her treatment and pm me if you want to chat/any support.

claire

[nickbar]

We will be anxious to hear your report. Best wishes to the disappearing H>