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Should we go to an Epilepsy Center?--need advice and opinions
Mon, 02/20/2006 - 07:16Topic: Parents & Caregivers
My 14 year old son has just been diagnosed with simple and complex partial seizures (temporal lobe). He may have been having the simples for several years, intermittently, but suddenly developed complex ones and has had several in a two-week time frame. Very sudden and scary.
The neurologist was very kind, but totally dismissive and only spent about five minutes explaining anything to us.
We have (thankfully) very good health insurance and can choose our own providers.
Three hours away, in St. Louis, is an Epilepsy Center (Washington University) that does everything from First Seizure diagnosis/counseling to Intractable Cases. On the website, they say they give "extensive education" to new patients/parents.
As far as I know, my son has not even had basic bloodwork done. They took blood at the ER, but other than hearing it was "normal" I have no idea what they even looked at.
I feel like this condition at the very least, warrants us finding out everything we can. I don't want to freak my son out, or overreact.
Is it the right thing to do, seeking a "second opinion" and expertise, or should we wait and see how he does?
Thanks,
Leslie
Comments
Re: Re: Re: Re: Should we go to an Epilepsy Center?--need advice
Submitted by guitarmomma on Mon, 2006-02-20 - 17:46
It is hard to tell if his new behavior is from the seizures or the new medication. I would call the neuro to update him and see what he says.
I have found with my own kids as well as others that I have been around, sometimes we see more seizures when first starting a medication. It is as if they are fighting the medication before things settle down.
I hope things work out ok for him and this medication. Hang in there. It usually takes 4-6 weeks to get accostumed to the med and have side effects level off if they are going to...
Gin
Re: Re: Re: Re: Re: Should we go to an Epilepsy Center?--need ad
Submitted by land1968 on Mon, 2006-02-20 - 19:23
The neuro told us to go to half tablets 2x a day for a week and then go back to the "full dose." Which is making me nervous, seizure wise, but I don't know what else to do since I couldn't in good conscience send him to school all dopey. He is a dramatic kid anyhow and it's hard to say whether or not he's exaggerating.
Leslie
Re: Re: Re: Should we go to an Epilepsy Center?--need advice and
Submitted by land1968 on Mon, 2006-02-20 - 10:50
Yes, he did start Keppra, 250 mg twice a day. The first three days (Thursday, Friday, Saturday) were fine. He didn't have any complex seizures but still has the simple ones and many, many "auras" (I understand these might actually be small seizures?) However, yesterday and today, he seems quite drunk-ish. Very goofy and can't focus. He doesn't like it and neither do I. Is this normal?