Do I need to contact the paed?

[lou031205]

DD1 (3.6) was dx with Epilepsy in January, drop attacks & some absences.

She had an MRI in March - widespread cortical dysplasia. Paed wrote that this increases the need to be aggressive in monitoring/treating the seizures. She currently takes 5mls Epilim morning and night.

About 10 days ago she had a 'turn' - vacant look, mouth moving as if she had something caught in her teeth & was trying to dislodge it - quite subtle but not responding for about 30 seconds. Yesterday, she had the same thing, and again this morning while waiting to go into preschool.

She has come home from preschool & begged to go to bed. When I said no, she has fallen asleep half-sitting, half-standing, leaning against the sofa next to me.

She hasn't had anything noticeable since January, but now 3 episodes quite close together that we have noticed. Possibly more that we haven't.

Do I need to phone the paed's secretary as we don't see him again until Mid-August, or do we just wait until then?

No, don't wait. Phone straight away while its fresh in your mind (not that you'll forget, but it's a long time till August). Even if all they do is record it. DSs neuro has told us to phone EVERY time there is even a subtle change. Have her on speed dial now

agree with feelingbetter. don't wait till next month.

OK, thanks. I did try to phone earlier, but it went to answerphone, and I started to doubt myself in the meantime.

Also could have an underlying infection triggering them

On my to do list now for the morning, alongside the Blue Badge appeal.

Also write it down every time anything happens as it is so easy to forget.

Date
Time
How long it lasted
Where she was
What she was doing

Paed says to go up to 6mls BD of Epilim. He says at a push he can go to 6.5mls given DD's weight, but that is the limit.

What would be next? Are absence seizures important to control?

Lou, can I ask what your DD weighs?
That is the same dose as my 1 yr old (very chubby tall) DS!

As I understand it, and I may not understand it too well , absence seizures are not a problem on their own, but it is important to record and control them when they come along with other seizures in littlies like ours as part of a bigger epilepsy picture .

Are you getting a new EEG done? Or see how it goes till next appointment?

Good Luck x

14.4kg, feelingbetter. He has told us to take it up to 6mls, then see how she does. Next appt is 19th Aug. We can phone if still getting seizures.