UPDATE--Re: Begging for HELP! Seizures--EEGs vs. MEEGs and SPECT

June 11, 2009

I wanted to update all of you wonderful parents who have been so incredibly

helpful and generous with your knowledge on our situation regarding seizures and

regression with our son.

We have scheduled a 24 hr. EEG for next weekend. I have no doubt that my son was

indeed having seizures. But the weird thing is, after all that regressive

behavior (total red flags for seizures in terms of confused motor planning,

spacing out on where he is/what he is doing, tired all the time, unable to put

shoes on, clumsiness, sudden and completely socially withdrawn, slurred speech

and mumbling, non-sensical speech, cognitive processing very slow.... etc.

etc.!!!) he suddenly in the last 3 days has bounced back completely to where he

was before. The only thing we changed is that I cut out the time release

Melatonin he was receiving (strong dose- 5.5 mg) because I heard it can cause

seizures.

Does this make sense to any of you? Because he had this major, very

serious/severe regression at age 4,, we are still taking this very seriously and

think we need to do the EEG, but how weird is it that he can be so completely

regressing one week and snap back to the previous level of functioning???

Just trying to understand. We will do the EEG for LKS and also for absence

seizures, although we are afraid the stress may hurt him more than the tests

will yeild info at this point. Can seizures come and go so quickly?

And if he's doing well now, what's the chance of catching something on the

EEG??? I believe he has ongoing bouts of seizures, subclinical perhaps, but I

think they are part of his overall history and developmental issues..... The

question is of course how to best find out about them and treat them!

Wanted to also share with you all that I have had a terrifically difficult time

finding Neuros who use other diagnostics like the MEEG or QEEG. Almost

nonexisitent it seems. Dr. Frye in Houston does MEEGs and Rob Coben in

Long Island does QEEGs. Duffy at The Children's Hospital in Boston now

only does standard EEGs apparently...

Any thoughts about this are greatly appreciated...!

Thank you again very much everyone for all of your help!!!!!!

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