Wednesday, January 21, 2009

We have a diagnosis!!!

So much to our surprise, nearly 2 months after our visit with the geneticist, she calls to inform me that Isaac does have Prader Willi Syndrome. The methylation tests have shown that. It amazed us. We are still in shock. We truly thought we would go on without a diagnosis.

UP NEXT: A visit to a clinic in Columbus, OH to establish a treatment plan. Yay for growth hormone!!!

4 comments:

Bryan said...

So is the insurance company going to be a problem? Also how long is it going to take to get a referral or whatever you need to schedule the appointment in Columbus?

jenrink said...

I'm a PW mom, if you haven't got one already -- ask your insurance company to assign a case manager to your case...they work wonders. Best of luck to you, Isaac looks healthy and adorable.

linds said...

Im a mom with a 6 year old with PW. These time I can remember so clearly, they are tough... they are amazing kids and adults and the joy she bring to everyone around her is something most people couldn't do. As our daughter says "It's just Prader Willi Silly"

If you need anything you can always email
Lindsay
bouwkamp@cogeco.ca

chaserbugsmommy said...

He is getting so big and he did GREAT on Friday!!