Neurologist/Seizures??? Help Please!

June 6, 2003

Hi everyone. I am sitting here crying and feel like I am at my wits' end and I

don't know what to do. I'll try to keep this short but am very emotional right

now and feeling like nobody cares that my son is having seizures so I may

ramble. Evan is Autistic and has SID so I know it's difficult for him to visit

with anyone in the medical field.....I already know that Lots of us on these

lists go throught that, right? So, here goes....

Back in April, his pediatrician referred to us to Child Neurology Associates

because we suspect (as does the pediatrician) that he is having absence seizures

and behavioral seizures. We went to see the Neurologist and had an EEG and an

MRI scheduled. The EEG was supposed to be in the office on 5/14. We went in

and they gave Evan chloral hydrate to sedate him. NOT. I didn't know until it

was too late that some autistic children have the complete opposite reaction

from chloral hydrate and Evan did. He had the worst rage/meltdown I've ever

seen in my life. So, the next day we (the Neuro's office and I) decided on an

in-hospital EEG. That was 3 weeks ago and they have not been able to schedule

it yet. I was told, today, that " the hospital is not scheduling them right

now " . That's it.....nothing else. No suggestions as to what to do in the

meantime. No, I don't believe that. Anyway, he had his MRI and that came back

normal. In the meantime, I was told about another neurologist in Athens and he

was highly recommended by many people. I called

there Tuesday and was told that Evan's pediatrician has to make the first

appointment for him. That's fine.....understood.....no problem. Evan's

pediatrician called there and they can't see him until sometime in August. Ok -

what do I do now? Evan is having seizures and even I ( " just a mom " ) know that

seizures, no matter what type, are not good for you. I'm crying out of

frustration and concern for my son. What do I do?

Love, prayers and heart hugs,

Debbie (GA), Mom to Evan (4.5 y/o with ToF, PA, RBBB, Autism Spectrum Disorder,

SID, Asthma); (13 months old and HH and NT?); and my 3 angel babies whom

I will finally see when God says it's time!

9:1-3

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