Cindy- we're back from the NIH Connective Tissue Study in Baltimore (long)

[Guest guest]

In a message dated 6/19/04 10:42:40 AM Eastern Daylight Time,

waltzacrosstexaswithme@... writes:

> . I was so thrilled that Dr. Francomano and Dr. McDonnell acted quickly

> upon my pleading for help for Cindy and Dylan, and called Cindy even before I

> left Baltimore. What an answer to prayer!!!

>

>

Hi Cindy,

I'm so glad that you all will be going to see Clair. When I spoke to her last

fall about Dylan, she told me then that she was very happy to see you all.

She was concerned though that Dylan needed someone that would actually " treat "

him and that her protocol, while helpful hopefully, was not a treatment one.

That is why she was trying to come up with someone for h imto see . I hope that

things are doing a little better for him though I know from the little I've

been able to read recently, it has still been a rough road for both of you. I

think of you all often.

Take care,

[Guest guest]

From: Mdmssmile@... Wrote:

To: ceda

Sent: Saturday, June 19, 2004 8:37 PM

Subject: Cindy- we're back from the NIH Connective Tissue Study in

Baltimore (long)

Hi Cindy,

I'm so glad that you all will be going to see Clair. When I spoke to her last

fall about Dylan, she told me then that she was very happy to see you all.

She was concerned though that Dylan needed someone that would actually " treat "

him and that her protocol, while helpful hopefully, was not a treatment one.

That is why she was trying to come up with someone for h imto see . I hope

that

things are doing a little better for him though I know from the little I've

been able to read recently, it has still been a rough road for both of you. I

think of you all often.

Take care,

***********************************

Thanks Dianna, I don't think the Dr F has put together that Dylan is one and

the same child that you and Lonestar have spoke to her about. I will

meantion you and while we are there. I'll also see her while in Buffalo at

the conferance. She has set aside some time on that Friday to speak to me. He

may or may not get help while there, but I can only hope they have some

suggestions where to send us from there or options for treatment here at home.

They seem interested that his BP and pulse never rise when in extreme pain, and

that this came on so fast. They said they have only seen that a few times

before. We will go in the hope of a chance to get help.

He is about the same as he has been for about 3 months now. We seem to be

going in a straight line for now on the rollercoaster we all ride on.

Thank you for your thoughts.

Cindylouwho