Debulking in Canada???

natlok · #1 03-03-2009, 05:39 AM

Hello!!!
I would like to know if anyone found good specialists treating in Canada.
My daughter is 16 month old already. I guess, we are ready for the surgery already. Losing from day to day any points to 'wait-and-see' approach.
Alicia has a hemangioma between her eyes in a size of a walnut. It has grown in her second month of life and staying in a pretty stable condition already more than a year. Not involuting much.
We are currently on Propranalol, not seeing much of visible results.
Looking for help!!! And info!!!

Thanks, friends!!!

missy · #2 03-03-2009, 12:15 PM

How long have you been on the propranalol? And what part of Canada are you in?

Welcome, too!!

Missy

natlok · #3 03-03-2009, 01:42 PM

Hi there!
Thanks for writing me.
We are in Toronto.
3 weeks of Propranalol, no side effects, no positive changes. A leison became different color - from pale purple to spotty dark red - a bit scary. Should we stop? I don't know. Waiting for a responce of Dr. Levitin.

sophia's mum · #4 03-04-2009, 02:30 AM

Hello,
We are in Toronto, too. My daughter is 15 months old, has H on her forehead. She's been treated by doctors in HSC and she's been on propranolol for 5 months already. The leison's color is changed to light pink, its texture is turning very soft, its size is getting smaller...but the H is still there so far. We met a surgeon @HSC for consulting and we were suggested come back again in 6 months. Wish to keep in touch with you.

natlok · #5 03-04-2009, 01:25 PM

Hi, dear Sophia's mom!!
Write please on my personal e-mail your telephone number natlokshin@hotmail.com. We will be in touch!!!
I am happy to hear that Propranalol works in you case. I wish it will disappear completely as soon as possible. I talked yesterday to one of the best pediatric plastic sergeant in Toronto. I was shocked with info I got.
We probably have to go to New York for the surgery.
Natasha

Tessamarie · #6 03-12-2009, 05:29 PM

Natlok,

I am also in the Toronto area. Did you get your family doc to do a referral to HSC? My daughter's H is starting to affect her eye (pushing down on her eyelid area now) and I am wanting to get a referral to the HSC. Also, is there someone there that you would recommend?

Thanks!

sophia's mum · #7 03-13-2009, 02:37 AM

You may contact Dr. E. Pope. Tel: 416-813 8990. Good luck.

Tessamarie · #8 03-13-2009, 01:50 PM

Sophia's mom: Is Dr.E. Pope at HSC? Thank you so much for the number!!

natlok · #9 03-13-2009, 02:39 PM

Hi, Tessamarie!!!
Please write to my e-mail: natlokshin@hotmail.com
I may help you with information.

Natasha

Sam's Mom · #10 03-13-2009, 03:04 PM

Hi there -

From what I understand , the wait for a referral to Sick Kids clinics can be quite long.

When our son was about 3 months old, at a check-up our ped told us to take him to Emergency there because of concerns about his airway. (Sam has a parotid hemangioma). When we got there, we got appointments with the ENT and derm clinics for the following week or two!

Now, when I hear about the wait times to get in, I wonder if my doc was being crafty and wanted to get us in more quickly by sending us to the ER - certainly when we got there, none of the docs thought there was concern about his breathing, and when he was scoped the next week, his airway was fine.