Re: Advice appreciated/BARBARA

[Guest guest]

Forgot to send this to your attention the first time! SORRY!

> Hi Barbara,

> Thanks for taking the time to respond. You're not being a

downer,

> just truthful! I'm afraid of the same thing....I know several

others

> have experienced this as well. How wonderful it would be if our

> resourceful kids whose bodies can figure out ways around all of

these

> treatments could figure out a way around these seizures!!!!!!! I

have

> a mom that has e-mailed me personally (she doesn't post to the

group

> anymore) that says they could always figure out what was causing

the

> breakthroughs - so I keep letting that inspire me. Her son went to

> Hopkins, so I often wonder if we just need to pack up and head

north

> to Baltimore and quit fooling around. No guarantees, I know, and

> reality soon reminds me that financially we can't do that. My

> husband has open enrollment on his insurance this month, and we're

> considering choosing the option to be able to go out of

network...it

> would still be very expensive, but worth every penny if it would

make

> a difference in trying to fix this.

> As I've told Rhonda, I've often wondered if we can't figure this

> out if we could give Macie a break from the diet and try it again

> later with more success. Wonder if anyone has tried that?

> We will still keep tinkering and hope to hit the jackpot. She

is

> still better now than she was pre-diet and on meds.

>

> Thanks, Barbara

> Best wishes to you and Jake,

>

> Glenna