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Old 09-10-2010, 09:41 PM
teardrop2 teardrop2 is offline
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Join Date: Jul 2010
Posts: 21
Default please help

please is there anyone who can help me in the dilemma -

my son has PWS 1/3 of face, no SW, no GLAUCOMA for now. The doctor is determined to start treating PWS only at 2, he says because of general anestesia - he will not put the child under risk...

but i read everywhere - is this TRUE AT ALL - that earlier is better.

We only have one chance(by insurance) - that is wait until 2 years....otherwise we must go abroad and pay everything by overselves....

DO YOU THINK IS WORTHWILE or the effect would probably the same if we wait until the child is 2.? I can't even make a compromise with doctor to start at 1 year.

I can not imagine living 2 years and looking the condition getting worse, and not do anything, but wait. Is this good? What would you think? Please do share your opinion.
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Old 09-11-2010, 01:34 AM
kaykay kaykay is offline
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Join Date: May 2006
Posts: 233

i know this won't help much, but if insurance will cover it, wait the two years. I know you are worried about your baby's health. You are a parent an anxious which is understandable. I think its best you hear from the experts if 2 years will make a difference. my pws didn't thicken until later on if that is a concern.

I am not a parent. But if there are no immediate health threats an he is fine, i would wait. Even when he's two he won't know he's any different yet either.

Enjoy your baby, montior his health but let him be a baby cause you are going to be more stressed out than him over this. You need your engeries to take care of him so relax. Keep up to date with the doctor if anything changes.
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Old 09-13-2010, 06:23 PM
Talans Mommy Talans Mommy is offline
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Join Date: Jun 2010
Posts: 14

From what all the Specialists have told us, waiting a while will not make it any harder to remove the pws. Our Specialists are waiting until our son is 1 year old to start treatment. Those on the face are MUCH easier to remove/lighten then those on the legs. So, we won't get GREAT results like you probably will. I think you are fine to wait.

Just think, if you push it and there is a problem with the treatments that is life threatening due to having your child put under so young, that will be horrible. I know that having a PWS on the face is probably harder than our sons on his leg. But, don't do anything that could put your child's life at risk.
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Old 09-21-2010, 02:12 AM
nickbar nickbar is offline
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Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,054

I would highly recommend contacting Dr. Nelson or Dr. Gernomous on the ask the expert. They can give you information on why starting early can be benefitial in the long run....and the options
Corinne Barinaga
VBF Director of Family Services
vbfadvocate @ live. com (no spaces)
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