Re: Classical EDS too?/betty

August 21, 2004

Thank you Betty. I have to be strong. He can't do this on his own.

Seems people keep asking about the Echo findings. I'll post that separately with

a new title so it doesn't get lost by members that don't read all emails.

Cindylouwho

RE: Classical EDS too?/NIH report

>

> Hi Cindy:

> How are you....particularly in view of all this information, but you

> have been very worried and just knew a great deal was going on with

> Dylan. Now you have the info to move ahead with possible treatments and

> much greater understanding of the core problems. Know thine enemy, so

> to speak.

>

> Do you know if it is standard practice for study participants to

> receive a preliminary report( by e-mail I assume) and especially in this

> short time? I have always found Dr.'s notes to be devoid of reference

> to the gravity of or prognosis for a patient....just factual. I suspect

> this preliminary report is indicative of their concern. They do talk of

> the need for prompt work-up and recommendations and identify the AV

> Block as the No. 1 item and also the autonomic dysfunction. I believe

> you said he had an echo and MRA of the Aorta so perhaps those tests are

> normal since there was no mention of abnormality in this report,

> particularly as the AV block was identified. Here's hoping!!

>

> It seems unusual that they chose not to do an MRI of the cervical or

> thoracic spine despite the abnormalities they and you observed.

>

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