Has anyone used Aldara on a PWS? - Vascular Birthmarks Foundation Forum
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Old 06-14-2009, 12:24 AM
Melaina'sMommy Melaina'sMommy is offline
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Default Has anyone used Aldara on a PWS?

My 4yr old's doctor wants me to try the Aldara cream on her face after a treatment to see if it helps get better results since she has hit a standstill on the progress she is making on each laser treatment. I understand there are risks involved and want to know if anyone has used it and if they had good or bad experience/results from it.

Thanks,
Linda
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Old 06-16-2009, 02:12 AM
tess tess is offline
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Hi, Linda!

We use Aldera cream with ouur 19-month-old daughter once following a laser treatment. We had heard it might help keep the vessels from regrowing or healing after being destroyed by the laser, and were excited to give the cream a try!

Unfortunately, the cream migrated from her cheek, where the PWS is, to her mouth. (We think her pacifier is to blame for smearing the Aldera cream onto her lips.) The cream caused a terrible blistering across both her lips within a day or two of beginning treatment. The first day, I thought she just was developing chapped lips from a cold. The next day, I realized the blistering was getting worse - MUCH worse.

We discontinued the Aldera cream, but it took almost a week for her mouth to heal, during which time she could not eat or sleep. The blistering covered both lips entirely, even though we had never directly applied the Aldera cream to her mouth. It is hard to overstate how terrible the blistering was. It was truly nightmarish to watch her suffer such pain.

My husband and I, along with our doctor, have agreed not to use the Aldera cream again until our daughter is old enough to use appropriate caution in keeping it only on the treated area of her face and away from her lips. Perhaps your daughter, at age 4, can will be able to do so!

We are hoping that the Aldera cream will one day be another effective tool in our treatment program... but, for now, we've had to set it aside until our daughter is a bit older.

Blessings to you and your daughter as you continue her treatment.
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Old 06-22-2009, 05:28 AM
Melaina'sMommy Melaina'sMommy is offline
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Thank you for the response. The reason I asked was because of some of the info I read on the internet about possible complications such as the blistering on the lips that you described as well as many other worse problems. One site I found disturbing was doctorsaredangerous.com which scared the heck out of me. I've decided not to use the cream on my daughter because I think that even at 4yrs old, there is a high probability that the cream will end up on her lips and don't want to risk it. Your story has given me confirmation that I have made the right decision for her at this time.

Thanks!
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