God bless you Robin. I know you are having an awful time with Zach. My advice is
pursue the seizure theory and get Zach on some sort of medicication. We have an
excellent Pediatric Neurologist here in Memphis and his name is J.T. Jabbour. He
is a LeBonnheur Children Hospital, Pedoneuro Clinic. He has helped me get help
for a nephewof mine. Maybe your folks here could contact him and he could refer
you to someone in your area. J.T.'s a great human being and would be very
helpful.

Bobby

Robin Frisch wrote:

> Hi Everyone,
> I have no words for how much it means to me how you are all putting your
> heads together for ZAch. I am a children's museum consultant and I had
> appointments today or I would have written back sooner. Unfortunately, making
> a living still has to happen even when I can hardly concentrate on anything .
> . .
>
> Anyway, Yvonne, what you wrote makes so much sense to me. When Zach used to
> have seizures, his face would always get somewhat flushed first, they came on
> when he was hot; either overheated from the sun or a fever.
>
> Through out all this we have noticed the same thing that we tried to tell the
> doctors, before the "psychosis" talk starts, his face gets flushed and hot,
> then it is at it's worst.
>
> Also, this may have nothing to do with it, but his blood pressure has been
> higher lately, much higher than it has ever been before, approx. 170/90 at
> times, and he is 15 years old, 5'4" and weights approx. 135 lbs.
>
> He was doing a little better a few days ago, and we thought whatever made
> this happen, the symptoms are depression and they said schizoid affective
> disorder, so let them treat the symptoms, which they are with Luvox and
> Seraquel, and we thought maybe the meds are "kicking in". I was still scared
> because I thought and think, if I don't figure out why this happened, how can
> I keep it from happening again??
>
> Well, yesterday and today he is not so good again, so I am thinking the
> medicines are not treating the true problem. We wanted them to put him back
> on Phenobarbital again, because somewhat instinctively I thought this could
> have been connected to his seizures of long ago, but they did not seem to
> think that was a good plan.
>
> He did have a cat scan, an MRI, and a 72 hour EEG at the University of
> Chicago Hospital 2 weeks ago. U of C  wanted to put him on an experimental
> anti-convulsant drug that would make him gain 45-60 pounds, and to me that
> would be devastating to his self esteem, plus all the transferring from
> wheelchair to walker that he does.  I said no. They never explained exactly
> what was in his EEG report to recommend this, I have requested a copy of the
> report. The neurologist just said there were some things there that could be
> artifacts or could be something else, but he was not more explicit than that.
>
> His MRI showed a great deal of periventricular white matter, which the
> neurologist just said is CP. I do have that report, and it says on there that
> clinical correlation is advised with these results, and I asked the
> neurologist about that, but he just said that it is just CP.
>
> I called Mayo Clinic, they said I could take him there if I would like, but I
> am not sure if I should put ZAch through all that again, plus I don't know if
> there is enough evidence of a neurological reason, rather than what the
> psychiatrists are saying. What a mess!
>
> I am trying to figure it all out, I really am.
>
> Meanwhile, ZAch sounded miserable and anguished again today, and asked if I
> could just come get him out of there. I think my heart is breaking.
> Robin