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Re: Ariella

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We went through years of trauma, not getting a diagnosis, and not knowing

what was wrong with my older daughter.

We went to the Diagnostic Center at Children's Hospital of Philadelphia,

and finally, we got a diagnosis that made sense.

I'm glad you checked it out.

Here is a link to an article that might interest you. The doctors that

diagnosed my daughter are the ones who were able to diagnose the child

profiled here...

http://www.nytimes.com/2008/06/15/magazine/15diagnosis-t.html?ref=magazine

You should consider having that testing with the tilt table. It will give

you data that may be able to tell if Gareth has dysautonomia or not.

> **

>

>

> <<Dysautonomia>>

>

> Hi, Everyone....Ariella....I have never heard of this and Googled to read

> about it. It sure fits Gareth to a T....right down to the neuro-vaso

> syncopes, pneumonias, connective tissue background, and lack of energy in

> the

> afternoon. I will ask this new Cardiologist what he thinks. They did

> recommend that Gareth do the tilt table and I said I saw no reason to

> subject him

> to that since we knew he had the OH. Thanks for the information....it's

> much appreciated.

>

> Take care, Everyone.

> Margaret

> Mom to Gareth 23 y/o, DS/ASD/OCD

>

>

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Margaret: I just read about Gareth being admitted to hospital again - I'm so

sorry. Thinking of you, and hoping that you and the docs will be able to get

him stabilized.

Sue, Mom to Milly, 23yrs, DS & Autism

>

> <<Dysautonomia>>

>

> Hi, Everyone....Ariella....I have never heard of this and Googled to read

> about it. It sure fits Gareth to a T....right down to the neuro-vaso

> syncopes, pneumonias, connective tissue background, and lack of energy in the

> afternoon. I will ask this new Cardiologist what he thinks. They did

> recommend that Gareth do the tilt table and I said I saw no reason to subject

him

> to that since we knew he had the OH. Thanks for the information....it's

> much appreciated.

>

> Take care, Everyone.

> Margaret

> Mom to Gareth 23 y/o, DS/ASD/OCD

>

>

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  • 5 months later...
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Ariella,

You're fine. It is a disturbing book. It's great that you are sensitive enough

to be hurt by it! That's an important quality in our world - to point out what's

hurtful and to never forget.

I know you understand that.

Thanks for helping us not forget.

Joan

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