Me again...Kindergartner with pws. - Page 2 - Vascular Birthmarks Foundation Forum
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Old 12-31-2005, 10:12 PM
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Default Re: Me again...Kindergartner with pws.

Hi Brad.
My daughter is in pre k now. She is 4 1/2. She has been on maintenance treatments since she was about 2 years of age.
The decision to go to maintenance was not an easy one to make. The main reason why her Doctor and I discussed maintenence, was because we were seeing no additional fading to her pws. Her Doctor felt that with the current laser technology, this is as much fading as we were going to see. We agreed on yearly for medical reasons to help keep the pws at bay. If I saw progression during that first year, I would have went back sooner, but thankfully we did not.
Corinne is 100 percent correct about getting a second and if needed, a third opinion. I have to be honest in saying that I did not bring my daughter to another doctor for another opinion. My reasons are because her Doctor is one of the best in the Vascular abnormalities field and I felt that he was correct in his assessment. ALso, she has had wonderful fading, more than I ever hoped for. I went into treatments knowing that most pws does not fade 100 percent. There have been very few total eradications since the 1970's. I do not want to "push the envelope" so to speak. These are only my reasons though.........
I have been considering the possibility of trying a IPL laser such as the Photoderm but I would not consider that until she was much older.
I agree with Hank 100 perecnt about needing a person who does not see your little one every day, to give you an honest opinion about fading. I had to do that also. It is so hard to be objective when you see them everyday....
Good luck.....
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Old 01-01-2006, 04:37 PM
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Default Re: Me again...Kindergartner with pws.

Thanks so much for the feedback. It really helps us. I think we will keep our appointment this week, and ask the doctor some questions about treatments v. maintenance.
Living up in here in the tundra of MN really brings out Jacobs PWS when it's cold. I sometimes wonder if it's a bad idea to let him play outside in the cold because his cheek really turns bright purple in one particular spot.
Again, we appreciate your thoughtful responses. Take care and have a wonderful New Year.

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Old 01-04-2006, 12:49 AM
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Default Re: Me again...Kindergartner with pws.

We live in Il., and although we don't get the amount of snow/cold we get enough lol. What I have discovered this year (thanks to this forum) is I still have to use sunblock on Gabby's PWS. You might notice that it won't darken as much w/the use of sunblock. I can't guarantee that but I know it's helped Gabby.

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Old 01-08-2006, 05:49 PM
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Default Re: Me again...Kindergartner with pws.

Thanks for the tip.* We'll give that a try, and besides, who am I kidding if I really think I can keep a 5 year old from playing outside...
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Old 01-13-2006, 11:42 PM
rhonda rhonda is offline
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Join Date: Jan 2006
Posts: 15
Default Re: Me again...Kindergartner with pws.

Hi Brad,

My son is 9 and in 3rd grade. At the beginning of each school year we sit down with the class and tell them about the procedure and what it will look like when he gets back to school. We even bring a picture taken right after surgery, the PWS is on most of his left cheek. We have had such a positive response from the kids by doing this. They ask fewer questions when he returns to school and are be eased by knowing he's not in pain at that point. It always looks worse than it feels after laser surgery, at least a couple days later anyway. By teaching our son about his pws, it has empowered him greatly. He knows that for a few short weeks after each treatment people will ask him questions and he can answer them with confidence. Good luck. -- Rhonda
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