Vascular Birthmarks Foundation Forum - View Single Post - Many questions.....
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Old 07-28-2005, 12:07 AM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 533
Default Re: Many questions.....

Hi Jeni,

I agree with Elena, you must keep check of glaucoma. I have SWS but not glaucoma. I have to get my eyes check normally every year but since I have been having other eye problems I have been getting it checked every time I see the doctor which is twice a month.

Just so you know the PWS getting darker is a normal thing. When ever your child is hot, cold, angry, crying, or any other kind of activity that makes her blood pump more it will happen. In the summer time blood pressure rises and that will do it as well. I can not even feel it, I have to look in the mirror just to tell.
She should always have sunscreen on when she is outside because the sun can prolong having to get laser treatment. The laser has to work harder to go thur the skin if it is tanned.

I suggest being trueful with your daughter about what is happening with her PWS. Let her know that it is normal for that to happen and she will not be able to do anything about it except to continue laser treatment. (it is reverse sycology) She is at the same again I started laser treatment 18 years ago. This will make her want to continue laser treatment as she gets older. I took some breaks from it but I kept doing it. I have had well over a hundred treatments now I am sure I lost count after awhile.

That is just my opinion of laser treatments after all these years it did more good for me then I know, but knowing about my condition at a very early age has helped me get past this years so far and has helped me to be able to share my feelings about it over the internet. If you where sitting across from me right now I would not have told you half the things I talk about on this group because I bottle up my feelings, but online I do not feel judged like I am out in the public.

I hope this helps and if you have any other questions please ask we are all here for you.

Hank
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