Posted on 03/03/2005 12:53:29 AM PST by lbmorris11
Start a journal to jot down in simple terms daily care and questions so you can cover it all when meeting for Child Development Clinic.
Early Intervention is better in some states and you can get signed up for that now.. It is Govt. so you have to watch out for the clueless liberals working for their grant money but there are also some awesome OT/PT and teachers.
Sign up for respite care, you'll need it.
It will all work out. Let go Let God.
Sound advice.
My son has his fave movies based on true life of those with the same severe disability.
"A Test Of Love"
"My Left Foot"
"Gabby" short for Gabreilla
Those are his personal spirit lifters.
Also he recommends them to new people in his life so they can be educated and he doesn't have to answer the million ??????'s
Everyone here has been so kind. I am checking into everyones links. Their is so much more I don't know then I do. I will keep you posted when I start to get a handle on the nature of the disease. It helps knowing others have walked this road with their kids before us. Not knowing what to do or say, all I can think is may God be with us all.
Hey when you get some research done and start working on your game plan.......if you feel comfortable share some pics, like some of us do.
If you are uncomfortable I respect your privacy and will be here along with others to support you.
Give Gabrialle a hug and a kiss from us!
Yes, if you are not too busy, please keep us updated.
God bless
Hi again,
I am in contact with someone in your situation. I will contact you probably today or tomorrow, by Private Message (PM) when I have more for you, so please watch your Private Messages.
Also,since this is a genetic defect, also look into gene therapy, there have been some successes with gene therapy for immune base genetic defects.
But of all things, do not give up. Continue looking, you may find the information you are looking for on the internet.
Do not be afraid to ask every medical forum you can find on the internet.
You have mail.
Please check your mail here (PM). I have sent you info from someone who has children with Rett Syndrome. Hope it is helpful.
God bless.
More info:
The best doctor in Ohio, according to a mom of daughters with Rett sydrone, is Dr. Max Wiznitzer, he is out of Univercity Hospital in Cleveland, Rainbows Babies and Children.
If you don't live in Ohio, perhaps you can contact his office & ask him who is the best doctor in your state.
Please let me know if you received my PM.
Bump
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