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-   Help and Resources for Hemangiomas (http://birthmark.org/board/forumdisplay.php?f=9)
-   -   Treatment Advice (http://birthmark.org/board/showthread.php?t=6027)

tinsea1 09-13-2012 03:42 PM

Treatment Advice
 
hi, new to this forum and have been doing lots of reading here and everyone, but i am at a fork in the road and am looking for some advice.

my daughter was born in March 2012, 7 weeks early, with a barely noticable red dot on her cheek. i was told, continuously to leave it be, as i watched it grow. oh it will go away, its done growing, etc etc. if i would not have been persistent adn done my own research i don't know where we would be.

However, i was eventually referred to a peds derm in Saskatoon, we did 3 weeks of timinol...with little results and have since been on propranolol since June (when she was about 4 months old) she is now 6.5 months old and rarely sleeps. i have been adviced it could be from the medication. i would say we have seen some results....when commencing with the med she was in the hospital for 6 days, i would say we saw great immediate results...the cone type subservice swelling seemed to go down. the redness is fading and turning slighly grey.

I am curious at what point should i start looking at other treatment alternatives, ie. surgical removal or lazer. I am tired of doctors saying leave it it will go away and then the next doctor i see says oh if you would have gotten here earlier....

i just want to make sure i have all the information i can....so at the age of 2 or 3,which is the age our derm is recommended we wait til to discuss surgery or lazer...i don;t get a doctor that says oh geez if we would have seen you earlier this would be much easier, etc.

Any advice or recommendations of doctors is appreciated. i am in saskatchewan, but would be willing to travel to alberta or winnipeg.

tinsea1 09-13-2012 03:43 PM

i can't seem to attach a photo?

hana1st 09-13-2012 08:50 PM

Nadolol
 
Sorry that you are going through this tough time. My son has 4 hemangiomas the most concerning being the one under his left eye. My family doctor prescribed timolol but since the one on his face was a combined hemangioma we saw no improvement. we got referred to a ped derm. I saw Dr. Pope at Sick Kids Hospital and she prescribed Nadolol which is similar to propranolol with fewer side effects and faster results. he takes it orally 2x a day. He has been taking the meds for 1 month now and have seen stellar improvement and no side effects. They inform me that they will not be visible by January. Perhaps you should research and ask if this is a better option to try before surgery.

tinsea1 09-13-2012 09:35 PM

thanks! sorry you are also going thru this. we are starting to experience some sleeplessness and i think nite terrors...which i attribute to the propranolol I don't want to take her off of it bc i am sure it stopped the growth i guess i expected it to shrink it as well. i just want to have all the information that i can....
i am going to check out other options and maybe i just need to be more patient. i will ask about Nadolol...
i would also like a biopsy to see if it is a NICH (non inviluting (spelling??) or one that will not go away on its own.
there seems to be way more knowledge in the States regarding treatment.

evanskl4 10-12-2012 06:01 PM

Hi there, my daughter also has an H on her cheek. She was on propanolol for about 6 months (from 2-8 months of age) and we recently weaned her off. She's also had 4 laser treatments and will be having surgery next month. Unfortunately I don't know anyone in your area but I would definitely try to talk to someone else and get another opinion. We were told that it is better to do surgery when they are younger (6-12 months of age) to aid in the healing process and also before they can really recognize their reflection and that they look different. Maybe you could email one of the experts through this site.
Best of luck to you!


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