? About Topical Timolol for hemangioma - Page 2 - Vascular Birthmarks Foundation Forum
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  #11  
Old 08-14-2010, 09:12 PM
Melea Melea is offline
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Default it work good for your baby??

Our Dr said the same, our 2 1/2 baby just had her first laser yesterday and see add TIMOLOL, did you had a good experience with it?
hope you baby is doing good
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  #12  
Old 08-25-2010, 12:35 AM
ADev ADev is offline
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We use Timolol on my daughter's small deep eyelid H and on her pencil eraser size superficial cheek H (that we also lasered starting at 1 1/2 months). We started Timolol when she was 3 1/2 months old and it really keep her eyelid H at bay. It never grew big enough to block her pupil and now at 7 months the H is pretty much gone...only if you really look would you notice a slight puffiness. The Timolol also stopped the "purpleness" of the H by the time she was 4 1/2 months, so even when it was a bit bigger people didn't really notice it like they did before the Timolol. I also think the Timolol has sped up her cheek hemagioma's involution. We lasered her cheek 6 times, as well as use timolol twice a day. We stopped lasering her cheek at 5 months but continued the Timolol and now 2 months later her cheek H is flatter and only has a light red ring around a white center. Much improved - most people think it's a boo boo. I really think the treatments have taken us from waiting until she's 3-5 for the H's to be gone to probably being all gone by 1 or 1 1/2. None of the treatment choices we used (laser and Timolol) were too evasive or caused any side effects.
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  #13  
Old 09-07-2010, 03:50 AM
blessed blessed is offline
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ADev....Do u have pictures that u wud share of ur child's hemangioma progression with laser treatments?...my daughter has a 1cm h on her cheek...have only used topical clobetasol and currently using timolol.
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  #14  
Old 09-10-2010, 05:11 PM
ADev ADev is offline
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Default Laser and Timolol pics..

Here are 3 pics of my daughter...the 1st pic is in March and shows her cheek H right before 1st the laser treatment (you can also see the start of her deep eye H too), second one is in late April after 2 lasers and maybe a week of timolol on her cheek and eye (her eye looks pretty bad at this point and the cheek doesn't look great either, but it also had not grown in size or raised anymore from the lasering), and the last one is in August after 6 lasers that stopped in June and 4 months of timolol on her eye and cheek. Eye H is barely noticeable and her cheek is flat and mostly white in the middle with a light ring of red on the outside. We are pretty happy with the results - she'll be 8 months next week so we think the H's are pretty stable and will only involute more now. We will continue timolol on both H's until she's 1.
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  #15  
Old 09-10-2010, 06:00 PM
sarajustice80 sarajustice80 is offline
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Adev- so you didn't do anything to her eye h except the timolol? When did the eye h stop growing? Wow it looks great!

My dd has a compound h on her scalp that I put timolol on to help the superficial part. The doctors tell me that it doesn't help the deep part but I quit using it for a few days and felt it started puffing back up so I started it again. I don't know- I feel that it's helping the deep part from getting bigger...
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  #16  
Old 09-10-2010, 06:30 PM
ADev ADev is offline
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Yep just timolol on her eye - it stopped growing as soon as we started the timolol, but we didn't see it go down until like a month or two of constant use. After 3 months of use it was pretty small and now after 4-5 months it is how it looks in the last pic. Even though it was a deep H it worked (in fact it was her opthamologists suggestion). But I think you have to consistantly use it for it to work because I noticed in the first few months towards the end of the day it would puff up a little and then once I put the timolol on at night it would shrink back down. Now I don't really notice that, but that's why we are going to use it until she's 1 - just to make sure there is no regrowth.
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  #17  
Old 09-11-2010, 10:44 PM
kayla rokuskie kayla rokuskie is offline
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My daughter has a h under her eyelid and has been using timolol and propranolol for 3 months theres been a huge difference but i feel its still affecting her vision. At 3months old when we started the meds she had high astigmatism. Did you ever experience vision problems?
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  #18  
Old 09-23-2010, 03:13 AM
jilliang jilliang is offline
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Smile Improvement with Timolol

Our daughter began using Timolol about 10 days ago to treat a compound H between her eyes. Currently she is 13 weeks and thus far she has had 3 laser treatments and 2 cortisone injections. Prior to initiating Timolol her H had remained relatively small (marble size) so we were reluctant to use Propranolol and thought we would try the topical option first. We've definitely not seen any additional growth and it seems as if her H has shrunk - at times it is completely flush w/ her skin. The results have been much better than we expected and for an already anxious mom it's nice to not have to worry about systemic effects.
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  #19  
Old 05-13-2011, 08:10 PM
ewalker ewalker is offline
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Hi, My 1 yo daughter has a pea-sized hemangioma on her forehead. After our first laser two weeks ago, the dr. recommended timolol too. He has been observing her for about 8 months and this was the first mention - I assume he's just heard about it.

I haven't filled the prescription (yet) and read this forum as part of my research. I'm a toxicologist who works in drug development and am acutely aware of often how little we know about how drugs work and their potential side effects, especially in kids, and thus am pretty conservative in my approach (this goes for treating E's h or treating her colds). I say this just for context about my personal approach.

I see two posts from people reporting possible side effects of timolol - possible vision changes from use directly on the eyelid/eye and possible cold hands feet in a baby receiving both oral and topical treatment.

Has anyone else suspected any side effects in their child from either topical or oral treatments?
Thanks so very much and I'm very happy for all of you who appear to be experiencing good results with this treatment!
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  #20  
Old 05-14-2011, 11:49 AM
missy missy is offline
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Hi and welcome!

Other parents will let you know their experiences soon. I totally understand your position ... so many times we want the best "new" treatment, not realizing the effect it will have ten or twenty years from now. No one here is going to poo-poo your careful and conservative approach! In fact, GOOD MAMA for doing your research!!

Keep us updated and let us know what happens.

Missy
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