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Jonathan Newton 06-05-2008 04:59 PM

My daughters PWS
Hi - just thought I would post a photo of my daughter PWS - any feedback or comments welcome. Would ideally like to post before and after but dont have first treatment untill december!!!.

Jonathan Newton 06-05-2008 05:03 PM

2 Attachment(s)
pics attached..................................

nickbar 06-05-2008 05:35 PM

DId you say she had MRi with contrast to rule out Sturge Weber Syndrome?

If you need more information, please let me know and I can direct you to the SWS Community.

Laser will probably be very beneficial for your daughter. I know December seems like a long time to wait...but it will be here before you know it. Enjoy your baby as they grow up so quickly. I know the UNKNOWN is often the hardest part. Hang in there.


Jonathan Newton 06-05-2008 06:13 PM

Thanks foe the nice reply Corinne , we have an MRI booked for next month - her eyes have been tested and the results came back all clear.
You are right - it is the unknown waiting to see how effective lasers are that is an agonizing wait!!!.

Superchikk 06-23-2008 01:52 AM

We also had to wait what seemed like forever for our first treatment. Our son was 8 months old for his first. It will come quicker than you think!

And our Doctor promised us the whole thing would be harder on me and my Husband than it was on my son...she was right. :)

kgregory 03-22-2010 01:16 AM

I just thought it might be reassuring to let you know that I was born with a PWS, and at age 15, it is almost completely gone because of treatments :)

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