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Original note from Tina:

" i am not sure what is

> going on the drs don't either, i think when all of this over WE the

Parents

> should write a book about this whole ordeal with EE\EG seeing that the dr

> don't know anymore then we do,probley even less. I am not kidding!!!! "

You're right. The doctors don't know what's going on and it's very

discouraging. They just told me yesterday that Shane is a very difficult

case. He's not being fed tubularly, but I can see where this is heading.

I could just cry, and do from time to time to let out the stress. My poor

son is scared and depressed and I feel so helpless in trying to help him.

Oh well, at least I have a place to vent now with people that are going

through it too. And that's a help. Thank you all for that.

Lynn

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