Aggravation and answered prayer?

July 21, 2004

The nightmare of Dylan¹s medical care when he developed all of the seizures

or tics continues.

Now we find out that the lab (the one where we waited for an hour and a half

with a child who neurologically could not be still) misread the requisition

and only ran one of the three tests ordered. No wonder I have not been able

to track down the results.

I then informed the neurologist¹s nurse all that has happened in the last

few weeks since these involuntary muscle movements began. She passed on the

message to the doc and today my answer was, ³No need to redo the labs, and

as far as the behaviors he needs to go see a psychiatrist.² I am furious,

Dylan definitely has his mannerisms, but what he experienced in that week

was not a behavior. It was so clearly an involuntary movement if anyone

would bother to look instead of just assuming it was a behavior. If one of

my other kids started this every one would have been doing back flips trying

to figure out what was going on.

On the plus side, when all of this happened in the prayer I sent to my

church I asked prayers for guidance on where to find answers. Since that

time every single piece has easily fallen into place for Dylan to go see

Judith Bluestone with Handle Institute; appt with Judith, funding, travel,

and even the conflicting eye doctor¹s appt being rescheduled by the doctor,

not by me. I have to trust that is where he needs to go now, especially

since it is so opposite of the horrible medical care he has received. It is

not as if I expect her to magically make him function like my other kids,

but I do believe she can stabilize his nervous system, so he doesn¹t have

such dramatic changes in state and function. The pediatrician is the only

one who has responded as if he believed there was something different going

on, unfortunately he sent us to the ER, where they dismissed us, so he did

not get to see them. I am also sure that if he had not seen his CST doc in

the midst of this, he would still be just as out of control.

His appt is Aug. 26th, I can hardly wait.

Kim L

Mom to Dylan 8 CHaRGE, Kayla 13, Tyler 16, wife to Roy

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