Anyone been to T.O. sick kids for H treatment? - Vascular Birthmarks Foundation Forum
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  #1  
Old 10-23-2010, 10:18 PM
adnama adnama is offline
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Question Anyone been to T.O. sick kids for H treatment?

Just wondering if anyone has taken their child to T.O. sick kids for treatment of H? If so what was the out come? What were the doctors like? thanks!
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  #2  
Old 10-24-2010, 01:47 PM
missy missy is offline
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There are parents who have been to Sick Kids for treatment, but I can't think of one who is active right now. Just wanted to say you might have to wait a bit for your post to be answered. Hang in there.

Missy
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  #3  
Old 10-27-2010, 04:41 PM
Tessamarie Tessamarie is offline
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I have been to Sick Kids for treatment of H on forehead and a nasal H (two of my kids have Hs). They do prefer the wait and see approach, the wait to get in and then the countless appointments have been long. We finally did see some progress when we changed doctors (previously had Dr.Lansang and now we are with Dr.Pope). They will refer you to clinics, be prepared for a long wait each time & to be called back a month later and then again months later, etc. I have heard that in some cases they do treat with propranolol...they talked about it with our one child but then figured the wait and see was better.
Also, they only accept a referral from a family doctor or dermatologist (etc.). Have you been given a referral yet?
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Old 10-28-2010, 02:12 PM
Sam's Mom Sam's Mom is offline
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My son is being treated at Sick Kid's for his parotid and beard hemangioma. While the parotid part was large, we were followed by ENT and obviously the dermatology clinic from the beginning. Sam is 3 now and propanol (sp?) wasn't yet an option when he was a baby but he was on steroids which worked very well. He is now having the glaucoma medication (can't remember the name at the moment) applied topically for the redness.

I actually have lots of good stuff to say about the treatmen Sam received. We didn't wait long for appointments at either clinic. Dr. Pope responded to emails promptly, even over the Christmas holidays when I was desperate to start weaning the steroids because Sam hadn't slept. The doctors do seem more conservative than others but in some cases, like Sam's, it actually turns out to be the best course.

Obviously, your milage may vary as they say, and every situation is different but we had a great experience with Sick Kid's and I feel very lucky that such an amazing facility is 15 minutes from my front door.
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Old 11-01-2010, 01:16 AM
newmom newmom is offline
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I saw Dr Pope at Sick Kids. Surprisingly we didn't wait too long for an inital appt - about 3 weeks, but I think that's because I e-mailed Dr Pope personally and told her our story and how anxious I was. Either way, it didn't really matter, because Sick Kids doesn't really support laser treatment, which is what my daughter needed (superficial hemangioma) and we ended up going to NYC every 2 weeks for about 4 months to get the treatment we wanted. Canada is very much of the wait and see approach. All I can say is know what you want when you get in and push for it! Dr Pope's resident said she was pro-propanolol, so if your child needs that then you may be in luck! But if you don't want the wait and see - be strong in telling them that and maybe you will have better luck than we did! My hands were kind of tied since they didn't believe in the laser treatment. Good luck - it's a hard and frustrating journey in Canada!
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Old 11-04-2010, 05:12 PM
adnama adnama is offline
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Thanks for all the responses! We had our family Doctor refer us to T.O. Sick Kids and they said they can't do anything because they will not do surgery on children that young (18months) ;s. I guess our next step is to wait until next July and see if London Victoria Hospital will do the surgery...this is so frustrating especially when you see and hear all the success stories from the states!
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Old 12-14-2010, 07:18 PM
Mae Mae is offline
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this is my first post and i was just wondering if there have been any updates.
my daughter is 13 weeks now and we go for her first app. on jan 26. it will be a 3 month wait for the appointmen and i'm so worried about that wait and see aproach. it's on her face right cheek.

if there is safe treatment i don't see the wait and see aproach, but have warned my hubby that we need to go in armed with as much info as we can.

we would not be able to travel to the u.s. unfortanatly

any advice would be great!

thank you very much
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  #8  
Old 12-15-2010, 12:56 AM
adnama adnama is offline
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Hi Mae,
We never did end up going to T.O. because they said they would not do surgery on our son because of his age (20 months). We have another appt. in London (not till July) and they seem a little more hopeful to do the surgery for us. With that said I know sick kids will do Propranolo (sp) treatments, which might be something worth looking into and maybe even laser???. All I can say is we did the "wait and see" and it is my biggest regrets!! If I would of had the information about different treatments when my son was first born I would of started some type of treatment asap! When the H is right on the child's face it does affect them and why put them through that if its not necessary? I drives me crazy that pretty much all Doctors in Ontario say "wait & see" when there are treatments out there! Make sure you are prepared when you go. Document everything, bring pictures, know the terminology and stand firm on why you want treatments for your child. It does make a difference if you go in prepared and know your stuff. Good luck and please keep us posted!

Amanda

Here is my e-mail if you want to chat adnama_16@hotmail.com
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  #9  
Old 12-21-2010, 05:19 PM
Mae Mae is offline
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thank you for responding!
sorry it took me so long, i don't have the net at home
will keep your email handy, thanks
and mine. rebeccamdunn13@hotmail.com

will let you know what happens, we go jan 26
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  #10  
Old 01-28-2011, 08:28 PM
Mae Mae is offline
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so we went. they were really good with her and put her on meds,3 times a day. we go back in two weeks then if no problums only once a month!
they just asked me what i wanted to do since it is on her face and close to the side of her mouth. i was really happy and luckily she is to little to tell me she dosen't want it! LOL

thank you for all the info here
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