Vascular Birthmarks Foundation Forum - View Single Post - Triplets with Hemangioma's
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Old 09-08-2009, 03:30 PM
madeeha madeeha is offline
Junior Member
Join Date: Sep 2009
Posts: 7

I am very sorry to hear about your little girlS and boys haemangioma but it sounds like that your consultants have acted very quickly in treating her with propranalol so your are very lucky as my daughter was turned away from our local hospital at 4 weeks and i then contacted a very well known hospital called Great Ormond Street hospital in london who admitted Alayna for 10 days and carried out various tests.

Alayna had a full internal examination such as scans heart kidney liver throat mouth inside the ear absoultely everything checked to eliminate the fact that the haemangioma could be growing inside. Thankfully the results came back clear.

The side effect to the haemangioma can be ulcerations and poor Alayna's lips ulcerated very badly at 4 weeks old so it left me unable to feed her. At present i still feed her through a tube in her nose. Her lips have improved but there is still scar tissue there and i dont want to apply to much pressure on them as they get very sore and red.

Alayna was started on Propranalol at age of 5 weeks and the results have been amazing. It is one of the best medicines that can be used to reduce haemangiomas faster than the old ways which was steriods which can also have far more side effects. Alayna was started on 1.5ml of propranalol however i took her to the hospital yesturday and the Dr feels that its not longer working as she is 5 months now and has outgrown it so they will be looking to increase the dose by 3ml's. Alayna's haemangioma has also turned a little redder than usual and she still cant open her right eye as fully as she does the left but once the propranalol is doubled i think she will be fine again.

Alayna's haemangioma grew very rapidly it was a red mark down the right side of her face covering her scalp eye nose mouth and specks of it were also on her neck and on her gums it could have got alot worse if i didnt act as quickly as i did and to get her help in London.

When she was born the mark was very pale pink and the doctors advised it was due to forcep delivery.

Please feel free to read our story in the local paper on line it will explain to you the nightmare i went through to get my daughter help.

Please try not to worry keep taking photographs of little ones everyday and keep comparing it give it at least a week or two Propranalol is the best course of medicine to start off just be very watchful of any ulcerations and immediately contact the doctor if you noticed it i dont want to frighten you but just warn you as i continued to feed Alayna and it made her lips worse that she may need plastic surgery in the future on her lips if the lip line doesnt re appear howver its early days for Alayna yet.

Also try and ensure babies nails are filed and kept blunt any scartch on the haemangioma could also cause ulcerations on the skin if it bleeds so a lot of care is needed.

i hope this information has been useful to you
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