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-   -   lower lip hemangioma, toronto (http://birthmark.org/board/showthread.php?t=6423)

bb girl 06-25-2013 01:14 AM

lower lip hemangioma, toronto
 
hi everyone!
im new to this forum and im glad i joined. DD has hemangioma on her lower lip, she's 7 weeks now and her hemangioma ulcerated. we went doctors to doctors but they tell us that it will just go away. i wanted to see a specialist so bad but they need referral and no doctor ever gave us a referral. she wasn't even seen by any pediatrician yet. just a family doctor and walk ins. my DD is in so much pain while feeding :(
does anyone know where we can ask help here in toronto? any support group here or anything? i feel so alone.. :(

smurph 06-25-2013 02:32 AM

I'm so sorry you are going through this. My daughter's lip hemangioma ulcerated when she was about 8 weeks old and it was sooo painful. She cried all the time and so I feel your pain. It was a very difficult time for us. At the time of my daughter's treatment (8 years ago) oral steroids were used and so that is what she went on. It worked very well for her. We also had to put an antibiotic cream on the ulceration until it healed and then we needed to put Aquaphor on her lip before every feeding and we continued to do this until she was almost one just to be on the safe side and to protect her lip from that friction. Finally, they gave us Xylocane..it's like a numbing cream that helped with the pain until the ulceration healed. Oral steroids aren't used much anymore. Other meds like propanolol and timolol are used so those might be an option for you.

I'm not sure how health care works in Canada exactly, but is it possible for you to get a referral to a specialist? There is a Vascular Anomalies Clinics at Hospital for Sick Children in Toronto, Canada. That might be a good place to go if you can since you are right in Toronto. I would definitely tell the pediatrician/family doctor or whoever would be giving you the referral that your daughter's hemangioma is growing rapidly and is badly ulcerated to the point that she is in a lot of pain when feeding...if it is interfering with feeding I would hope that they would realize that it is not just your typical hemangioma that will go away without any complications. If you go on the Find the Doctor link and click on Canada it will give you more info about places to go. In terms of support, you have found a great site here, but you can also to:
https://www.facebook.com/groups/160947156296/?fref=ts
You might find online support there as well. You could also call Sick Kids in Toronto to see if there are any support groups up in that area.
In the meantime, you could put aquaphor or vaseline on her lip.

Well, I hope some of that helps. I wish I lived closer to Toronto and I would come visit you!! haha! You are definitely not alone. I have been there and there are many others who have been too. Please let us know how it goes. Is there someone you can call to get that referral? I think that's the most important first step.
Hang in there. It will be ok. :)

Shannon

bb girl 06-26-2013 09:53 AM

thanks for your reply.. i felt better in a way knowing theres someone out there who cares.. :) good news is our family doctor called back, but bad news is pedia wont be avilable till september, and we dont know how long before pedia can refder us to a pedia derm.. so we are taking a step and going to sick kids and take chances that someone could help us, even without the REFFFERAL.. just hoping for the best.. thanks again..

bb girl 06-27-2013 04:21 PM

thanks so much for your help.. we went to the hospital and got scheduled for the derm the following day.. yeey!! ^_^

missy 06-27-2013 07:05 PM

Wow! That's awesome news. Way to go!

Let us know what happens,

Missy

smurph 06-27-2013 11:11 PM

Fabulous!!! So happy to hear that!!! :) Keep us posted!
Shannon

bb girl 06-28-2013 04:16 AM

she had her first dosage of nadolol today. shes 8weeks in 2 days but her lips is so ulcerated and for this reason we started the medication right away. ill let u guys know the progress. thanks for your support! ^_^

bb girl 06-28-2013 09:57 PM

after 2nd dose, i think im dreaming or what but i see a huge diffrence.. thank God! i pray for all babies and families whos in the same situation..

smurph 06-29-2013 03:03 AM

Wow! That's great news!
Shannon

bb girl 07-28-2013 07:30 PM

1 Attachment(s)
after a month of nadolol.. baby happier now..


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