Another Seizure...

Jack had another seizure last night. It was a lot like the last one with the altered personality and repetative/robot like behaviors. He vomited right before and several times after...we gave him diastat about 5 minutes into the siezure. He did not have a fever, he didn't sleep much at all last night, but is out like a light now...probably due to the diastat.

I had Jason fax the following to his neurologist this morning:

Last night Jack had another seizure. He was restless over night, but no other seizures. Please call after you've had the chance to review this note.

9:00 pm -- vomit
9:20 pm -- lip smacking, swallowing hard, repeating "all done" -- he's not there, he won't smile and is staring a lot.
9:25 pm -- diastat (5 mg) given

Observations during this seizure: He could answer questions but very robot-like. No smile or personality. I took a small digital video of me interacting with Jack and asking him questions. No jerking or body movements. He had a slight tremor in his left hand when I asked him to hold the pen. (He does not use his right hand functionally so it's hard to say if it was one sided). His heart was racing.

Diastat seemed to take effect after about 10 minutes,

9:40 pm -- lying on couch with pillow and blanket. Awake, slight drool. Very sedate -- similar to previous post ictal states and reactions to diastat.
10:20 pm -- vomit
10:35 pm -- vomit
10:52 pm -- last vomit

He didn't sleep very well but is resting this morning with no fever and no more vomiting.

Previous seizures:

January 26, 2007 -- started with vomit, big seizure, jerking, turing blue, rapid/erratic breathing, heart racing, very high fever 104. Called 911 and transported to Medical Center ER. He was given diastat in the ambulance. Found out he had pneumonia. Released after about 12 hours of observation. We saw you in the ER this day. We rescheduled his March 29th neurology appointment to March 20th.

March 20, 2007 -- we were on our way to our neurology appointment and Jack vomited in the car. I called your office from my cell phone to cancel the appointment. We got home and around 9:00/9:30 am Jack was on his bed breathing erratically and convulsing. I gave diastat immediately. The seizure stopped instantly and he slept for quite a while. He had vomited and had loose stools. Our pediatrician felt he had the stomach flu. When we rescheduled the neurology appointment the only opening was in July 2007.

May 11, 2007 -- this seizure was a lot like his most recent.
9:15 am -- small vomit
9:30 am -- acting very strange, blank look, still answering questions, but humming repeatedly and tossing his blanket up and down. His heart is racing. Called neurology and spoke to Joanne, asked to have you call me because I thought Jack could be having a seizure.
9:53 am -- normal temperature. He's now picking at the sofa.
10:05 am - teeth grinding. I called his pediatrician at this point and asked if it sounded like a seizure. She said absolutely and told us to go ahead and give him diastat.
10:10 am -- diastat given.
11:00 am -- My husband arrives home from work and we decide to take him to Medical Center's ER. We spent 13 hours in the ER. They find a sinus infection on the CT scan. The Peds resident talks to you on the phone around 8:30 pm. We are discharged at 3:00 am.

Prior to January 2007, Jack had only ever had two or three small starting spells, nothing like what I described above. We are scheduled to see you in the UPC next week on June 12th.

I hate playing phone tag and leaving messages especially after that nasty nurse's call last week. I did call and thankfully got the "nice nurse" and told her to be on the look out for a fax from us. I also breifly described what happened.

I also called his ped and she said let him rest now and call with an update later -- if he seems ill, she'll squeeze us in.

I must go -- but I wanted to ask for your thoughts and prayers...I'll update later this afternoon. Thanks for listening.

*~*~Edited to add*~*~

Here's the update after tons of calls this morning!

Jack is fine, he is not ill and will not need to see the ped. Jack's smiling, laughing, playing, singing and eating/drinking as usual. The neuro called back and we went over the notes I sent. I highly suggest sending notes before a phone call -- it helped keep my poor brain organized! He said it looks like Jack is having a seizure right around an hour after his meds are given. We give meds every 12 hours. He said his levels probably get too low and the dose doesn't have time to take effect. We are changing his meds from 2 times daily to 3 times daily to keep a more steady amount of meds in his system...starting tomorrow. We are to go for labs a week from today, the day before our scheduled neuro appointment.

I am not sending Jack to school tomorrow to try and keep him healthy for his surgery on Wednesday. So he only has one week of school between now and July 9th. Starting on July 9th I am going to have his nurse meet us here at the house and ride the bus with Jack to and from school. I also scheduled her till 5 pm so she can help with Jack for about an hour after school. I thought maybe she could feed him a snack, and perhaps give him a bath (both of which he looooves) and both of which would be a huge help if I had assistance.

I am so tired. I haven't slept in soooo long! I am just relieved that Jack is doing well. I think it's an easy dinner tonight...pasta and sauce maybe?

Thanks for your thoughts. I will keep you posted!