A quick overview of what's been going on first: Becca - since June - has had more and more complex partial seizures despite keppra increases. Luckily, no simple partials which often turn status for her - but still - lots of sezures - enough so to have an inpact on her quality of life that's for sure.

We maxed out on keppra during our move to the DC area. Saw new neuro at Children's National Medical Center- who we like - and started titrating up on lamictal with plans to wean off keppra once that's done. Many of you know that this is a LONG prcess though. We are only on 5mg in AM and 10mg PM of lamictal and still 750mg AM and 750mg PM keppra.

Fast forward to Wed. night: Becca had a sleep deprived eeg scheduled for Thurs. at 0830 in DC at CNMC. Only 3-4 hours of sleep and no food for 8 hours prior allowed. She had 2 seizures late wed. night and four thurs. morning (luckily one during the EEG!). From late Wed. night to Sat. afternoon - despite gettng PLENTY of sleep and food since EEG and two doses of ativan - she has 21 complex partials total. Some longer than others.

We were told to bring her to CNMC ER by neuro on-call only to have him not even come down to see us - talked to him on phone is all. All they did is give her more ativan even though on the phone he acted like we had already given quite a bit. . . asked if we knew CPR for respiratory side effects of dose, etc. . . I was furious. She stopped seizing after they gave her another 2mg ativan and we are home. I had ativan at home for goodness sake. Must we endure DC traffic and all the headaches of an ER experience for more of something we already had. She had wires on her for monitoring, but did not have her hooked to monitor and said they were not worried about it (she was not cooperative with them at all - ativan makes her MEAN mostly.

Anyway - has a sleep deprived EEG messed any of your kiddos up so bad like this? And if so - how long does it take to recover? I am so glad we did not go through this last time she had an EEG, and that she does not seem to need these often. Scary. Now she is a post-avtivan MEAN bear and very wobbly still this morning (her hemi side especially).

THanks for any input you have. We will hopefully see her normal neuro this week and also hear about the EEG.

Hugs,
Kathleen

Just a quick question.

Did they let you give her the meds before the EEG? You said they held food for 8 hours prior. Did they hold her meds too? Last EEG we had the tech told me that she could have her meds prior but didn't tell me that til AFTER we had started the test. Just wondering if maybe missing her dose of keppra and Lamictal might have thrown her for a loop???

Wish I could give you some help but thankfully we haven't been down this road.

Carrie.

They did let me give her her lamictal and keppra at the normal time before the EEG. She was allowed water and this.

Good thinking though - that would make sense.

Thanks,
Kathleen

Oh, man, Kathleen. I am so sorry sweet Becca is having such a tough time. Ugh. I REALLY hate seizures!!

We have never had ths problem- EEGs usually are a temporary cure for Langan's seizures, at least until she gets unhooked from the monitor.

My thoughts, for what they are worth?

-is it possible she is getting sick? Langan always picks up a bug or two at the hospital, and her seizures go haywire a few days before we see the symptoms.

-how much ativan did they give her? We have seen seizures as a result of withdrawal from ativan if we have had to give a large amount and then it is stopped. I know some docs don't believe in the whole withdrawal seizures problem, but we've seen it first-hand.

I hope Becca bounces back soon. I know that ativan grumpiness well. An adult I know told me that it causes her massive headaches the day after she takes it, so I wonder if that's why the kiddos are so unhappy coming off of it??

(((((hugs)))))

I haven't seen that, but... the times Tom has had "trouble" have been when either we've skipped a dose OR when we've been late with a dose. In those cases, our neuro said give it 5 days for things to get back to normal. Not sure if this applies to getting out of whack from lack of sleep? Or ativan?

(((Hugs))) Seizures suck. Hope your neuro has some good advice for you.