Newborn With Hemangioma Help Please

kaltone · #1 03-11-2011, 12:19 PM

My granddaughter was born last Saturday and has these red spots over most of her body, she has 6 just on one arm and both ear canals are scarlet in colour. She has a cluster on the side of her face on the jaw line and the spots all differ in size. She was taken back into hospital the day she was born as she was having choking like episodes and making a whining sound. The doc treated her with IV antibiotics for 2 days and then on the 3rd day she was allowed home with an appointment to go back for a check in approx 6weeks and my son was told she has hemangioma. We do not know any more than that and we are obviously concerned and would welcome advice. Please help if you can.
Thanks Karen

smurph · #2 03-11-2011, 10:58 PM

Hi there! Congratulations on the birth of you granddaughter! I bet she is adorable. This is a great place to come for information and support! I'm sure it must be worrisome to have these hemangiomas popping up. It's so stressful when you're trying to figure out what's going on.

If it were me I might look into seeing a specialist before 6 weeks, just because she has so many, just to rule out any possible issues (internal hemangiomas or airway hemangiomas, especially where you mentioned the "choking" and "whining" sounds.) Where do you live? Do you know if there are any specialists in your area? Keep us posted! Let us know how it's going!

Shannon

kaltone · #3 03-12-2011, 09:42 PM

Hi Shannon thank you for your reply. Yes you are right it is worrying and I just want to make sure she gets h right treatment at the right time but it's difficult as I've never heard of this until now. Little Chloe has more come up on her scalp and I'm worried as you say in case she has any internal ones. My son has asked for a referral to Great Ormond Street Hospital in Londn UK (this is where we live). Do yo know what type of specialist she should go under.
I will keep you posted.
Karen x

missy · #4 03-12-2011, 11:14 PM

Try contacting this woman:

cath.gorst@alderhey.nhs.uk

and see if she knows exactly where you should go.

Missy

kaltone · #5 03-14-2011, 11:13 AM

Thank you so much for the link I will contact her straight away x

Jlondon · #6 03-24-2013, 10:09 AM

Hello katlone, I have just been referred by our local hospital paediatric department (your gp can also do this) to dr glover at great Ormand st and am taking my son to be treated with our first dose if propranolol.
tomorrow.
Here are the contact details. Call every day for cancellation appointments if worried.

Good luck

http://www.gosh.nhs.uk/health-profes...fer-a-patient/