RE: NIH findings so far/Berni/Cindy

August 21, 2004

Yes, Cindy, the comprehensiveness of the workup is a huge help....all

areas identified. With absorbing so much info I can well understand

that you did not request prognosis. Also with so much " stuff " they

themselves may not even have a guestimate.

With Heart block, in adults it is usually treated with a pacemaker but I

cannot remember which type of heart block requires a pacer. Perhaps in

adolescents this is not necessary and they just keep an eye on it. I

would have thought it would be discussed if it was a strong possibility.

Many people manage very well for many yrs. with a pacer.

At least now you know how to handle activity level I expect.

Bernie

Re: NIH findings so far/Bernie

Hi Bernie, I have the Bloodtest results with me. And the

electrocardiogram. The made a copy of the MRI for me to bring home, but

it hasn't been read by the radiologist yet. I don't think they normally

do that, but because Dylan has some back issues that need more work up,

they let me have them. And yes, they did discuss with us how each

problem could affect him, and what added work up needed to be done at

home. They help the best they can with all the findings and give you

names of Drs' in your area if they know any. I knew going in that they

don't treat, but just like I thought, they are wonderful about getting

all the information out in the open and a list of follow up tests

needed. They did not make an educated guess about his future, but

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