Wow Ken,
I think it totaly stinks how slow they are moving on your wife. I would think with her condition worsening that they would be more proactive. If the meds are making her worse have they tried tappering off?
Sorry you don't have much family support. You need to try and take care of yourself too. Your wife must be so frustrated and scared too.
By the way I think there are a lot of family members on this site and not just us moms :)
Sincerly,
Jamie (mom of Megan age 10)
--- In epilepsy@yahoogroups.com, Ken Wallace <ken@...> wrote:
>
> Jamie -
>
> Thank you. I agree August seems like a long time, but apparently the seizure
> center has limited beds and many people to evaluate. She did an 24-hour
> ambulatory EEG and MRI last year, but this was before she started having
> obvious seizures. All the neuro saw was "seizure activity," but the
> diagnosis went no further since the minor issues and we didn't even know the
> fuzziness and confusion were seizures. We thought they were side effects
> from some medications she takes for insomnia. He didn't prescribe any
> antiseizure meds.
>
> I asked if we can do some tests before the inpatient video monitoring study
> (another ambulatory EEG for a few days) and was essentially told no).
>
> We have some support. Her mom stays with her sometimes, but does not like to
> be alone, so if I want to go out, I have to bring in a nurse assistant to
> sit with her.
>
> And no, we get no such luck getting quick appointments¡K
>
> As far as adjusting meds, we're doing that now, but you have to go up so
> slowly and she has issues whenever we change the meds (more seizures).
>
> Ken
>
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