Treatment before 6 months for PWS - Vascular Birthmarks Foundation Forum
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  #1  
Old 03-20-2011, 01:29 PM
lauren7844 lauren7844 is offline
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Default Treatment before 6 months for PWS

My daughter is 5 weeks old and has a PWS on her right cheek. After researching I've found that beginning treatment before 6 months can greatly impact the clearance of the PWS. Has anyone begun treatment that early before and if so was anesthesia used? I'm in the Dallas area and saw 2 different dr.'s who wouldn't begin laser until she 6-7 months old. I contacted Dr. Milton Waner in New York who said he would begin laser treatments next month under general anesthesia. I've been told that Dr. Nelson in California and Dr. Geronemus are the experts when it comes to PWS and lasering. If early treatment really does make I difference I'm willing to travel to California or New York. Any advice or suggestions - PLEASE!!!!!
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  #2  
Old 03-20-2011, 03:20 PM
missy missy is offline
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Are you asking which doctor to choose? Because between those three, it would be a difficult choice to make.

Missy
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Old 03-20-2011, 06:35 PM
lauren7844 lauren7844 is offline
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Yes, I guess so! Who is considered the best? Also, some use anesthesia and some don't, which I'm confused about. If she is going to be in pain then I would like her to have anesthesia. I just want to make the right decision about the right doctor.
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Old 03-21-2011, 02:10 PM
lauren7844 lauren7844 is offline
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Also I really want to know any experience anyone has with treatment before 6 months of age and how well their infant recovered.
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Old 03-25-2011, 06:28 AM
Charlotte's Dad Charlotte's Dad is offline
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Congratulations on the arrival of your daughter. I hope you are enjoying this magical time.

My daughter, Charlotte, has a port wine stain that covers most of her left cheek. We started laser treatment when Charlotte was three months old and she has always had it done under GA (it was the doctor's recommendation to use GA and as the birthmark is quite large and is near Charlotte's left eye we were happy to follow the doctor's recommendation). Charlotte has just turned four and has had about 20 treatments so far. Although Charlotte's birthmark is still visible, it is now a pale pink and it is significantly lighter than before we commenced having it treated. It is only if Charlotte is upset/unwell or if it is a very hot day that other people seem to even notice her birth mark now.

Charlotte has always recovered from the GA really well and she is always her usual happy self within 30 minutes. She has always woken up crying but that lasts for a couple of minutes only and, particularly when she was younger, it seemed to be related to the fact that she was hungry rather than anything else. Until she was weaned at 13 months I would nurse her as soon as she woke from the GA and then after she was weaned I would always be sure to have a bottle of milk ready to give her as soon as she woke up. Now that she is older she looks forward to a glass of juice and the treat of having a chocolate cookie!

When she was a small baby the biggest problem we had was making sure she didn't scratch her face as she woke up from the GA and for the next few hours afterwards as it was obviously itchy after being lasered. We solved that problem by taping very soft cotton mittens to her hands the day of the treatment (they were put on her left hand before she went under the GA and they used her right hand for the device to monitor her oxygen levels etc).

I hope this helps.
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Old 04-06-2011, 07:52 PM
lauren7844 lauren7844 is offline
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Thank you for your reply. I'm very anxious to begin laser treatments and wish I could know how her PWS is going to respond. Sometimes I'm still kind of in shock about the whole thing. I just don't want to traumatize her at such an early age. I think I'll feel better once the initial treatment is over and I know what to expect.
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Old 04-07-2011, 03:33 PM
rhonda rhonda is offline
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My son is now 14 and his PWS is also on the left cheek and close to his eye. He has always been under GA for treatments and always will. The proximity to his eye requires an eye shield and therefore GA is necessary. He has always recovered very well from GA. Now that he's older and can have an IV, he recovers even quicker. I know you're wondering about prior to 6 mos, but Joey was 11 mos when he had his first treatment. Now they treat kids a lot sooner. Keep in mind that lasers today produce a lot less swelling and bruising than they did back when we first started and therefore produce less discomfort. If you'd like more info or want to see pictures, please email offline rhondageske@gmail.com.
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  #8  
Old 04-09-2011, 04:19 PM
rneufeld rneufeld is offline
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Default PWS treatment started at 6wks

Lauren,
My daughter was born with a PWS on her cheek, left arm, part of her chest and back. My ped sent us to the dermatologist because she thought the baby had a rash at 4wks old. The dermatologist determined it was a PWS. I was devastated. I know what you are going through. My daughter started treatment at 6wks with no GA. We go to the dr office, I hold her down and they zap her. Its absolutely horrible but she has no memory an hour later, we give her Tylenol which makes her loopy after. My daughter has the best personality. She is funny always smiling, loud...no residual effects from treatment and she is 7 months old. We get a treatment every month. The PWS is fading gradually. Don't mess around with inexperienced doctors go to Geronomous or Nelson. Email them from this site, they will email you back with in 48 hours. Dr. Nelson and I email back and forth. He is currently using 4 different lasers, he is getting 80% or higher with clearance. Dr. Geronomous is getting the same results so I think whoever is closer to you go. Dr. nelson will send you his assistant's email, email her and she will get the insurance coverage going for you. Do me a favor and stop researching PWS online- there are crazing things out there that scare us new moms. There is help for your baby, time is on your side. Dr. Nelson and others have so many patents pending from new lasers to creams so what can't be removed now can be in 5 years. I went into a sever depression, panic mode...you name it but what is most important for your baby is a being a strong Mommy.

It will get better, I promise
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  #9  
Old 05-01-2011, 06:05 AM
kelmel kelmel is offline
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My son has a PWS covering most of the left side of his face, into his scalp, and along his right jawline. His first treatment was at 7 weeks without general anthesia. It was not pleasant, but he was back to his happy self within the hour. The results were amazing. His next treatment was at 4 months and was under anesthisia. If I had it to do over, I think I would have just waited to do the first treatment under anthesia. The pro to doing the treatment early was that I saw how well he responded to the treatment and my fears regarding the PWS decreased significantly. The con was that it seemed painful for him during the procedure. That or he just did not appreciate being held down. He is a very active little guy, even at 7 weeks.

I agree with the previous poster to try not to do too much internet searching because it will get you down. What I like to see are the pictures of the children who have had treatment and how much their stains have faded. I would not have thought it was possible for my son's stain to have faded as much as it has if it were not for the pictures on the internet.

My son is now 14 months and his stain is hardly noticeable to those who do not know him. He just looks flushed. Have hope. The laser treatments do work. Find a doctor who has experience with PWS. We see Dr. Larry Eichenfield in San Diego and he has been a God sent. I found that not all dermatologists are up on the current treatments for PWS, so it is key to find one with experience.
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  #10  
Old 05-11-2011, 05:30 AM
Gracies Mom Gracies Mom is offline
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Default My baby possibly has PWS

My baby is 7 weeks old today. She is covered by Medicaid. She was seen by her Dr. at 2 weeks and he said he would have to just watch it. ( He wasn't certain it was PWS. We have another appt at 9 weeks old. I really want to get an experts opinion. She has it on her left side of her scalp, left eye lid. also has a couple of lighter color ones on her right side in her scalp. She has one on her neck and shoulder. The darker one is on her eye. These seem to be getting lighter in color. ( Not around eyelid though) It appears that there is good skin peeking through. Does that mean it might not be PWS?

I have also read where it is better to start treatment before 6 months. First of all, I want a good physician. But am having a hard time finding one that would accept medicaid and also one that would do treatment for an infant. Do you know if there is financial help for someone like my daughter? Any advice would so be appreciated!
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