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Since it's been 2 weeks since Andrew's diagnosis, I thought I'd check in with you all.

Andrew had another seizure Jan 25. His 17yo big brother was watching him at the time. He was sitting at the kitchen table waiting for his lunch, when he turn quiet, fell off his chair, and had partial body twitches, including his face. In his words-"big shivers all other-even my head was shaking". Apparently the twitches weren't very big, but I guess they felt big to him. He doesn't remember the fall, but he remembers being on the floor, and the twitching. Unfortunately I wasn't there at the time, so I had to rely on what my 17yo son could tell me. He says the whole event lasted about a min. Andrew seemed a little of sorts afterwards, but not too bad. I'm relieved the seizure was short lived, and my older son didn't have to administer his rescue meds. My older son took the whole thing pretty good. He didn't even realize it was a seizure at first so by the time he did, it was almost over. One amazing thing about that day is how much Andrew remembers in the 24 hours before the seizure, even today, 3 weeks later. Things that most little boys would have no interest in remembering, he remembers in fine detail.

We started him on valproic acid 150mg/2xday about 2 weeks ago, with the intention of increasing it if needed. He seems to be adjusting well which I am relieved about.

So now he's had 4 seizures in 7 months that have been during the day. At least that we remember and can confirm. I do remember him having other partials about 18 months ago too. I just didn't know what I was witnessing was a seizure at the time. Because his diagnosis is BRE, I was wondering if maybe I could be missing some of seizures that may be happening during the night. After googling night time seizures, I now know that he's definitely having them at night too. How often I'm really not sure of. At his Ped app't a few weeks ago, I asked if he's night time repetitive ticks and jerks could be seizure related but he said no. Now I know they probably most surely are.

I find I'm still living in the hyper state of alterness alot of the time. I need to quit it before it drives me crazy. I worry what his future holds. From what I've read the benign part of BRE epilepsy isn't always so benign after all. Many of these kids develop learning difficulties, speech and behavior problems. I now want to get him assessed and see where he's at so if anything, we can keep a close eye on his development and learning. He already sees a speech pathologist regularly for a slight delay. I'm still awaiting an app't date with the PE. The children's hospital phoned me once to confirm some info and set up a file for Andrew but that's been it so far. I imagine it will still be at least a few months away yet.

I've also just recently put 2+2 together and realized that my 14yo daughter has been having simple partials for the last few years as well. I always though it must have been a pinched nerve, or a result her migraines. I've taken her to the Dr for headaches and I guess he missed the signs too. She normally gets a bad headache, then her tongue and arm go numb/paralyzed. She gets deja vu feels quite often with this as well. She either can't talk at all for a min or 2, or can't say the word she's wants to say. Last time she was trying to say the word "cheese" and it came out "headband". Ever heard of that before? So now I know she's had simple partials as well. This has happened maybe a half of a dozen times in the 18 months or so. Last time being about 4 months ago. Pretty minor, but worth a mention to the PE. If it happens again, I'll take her in for an assessment as well.
 
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masterjen

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One way to determine if Andrew and your daughter have nocturnal seizures is to set up a baby monitor or security camera in their rooms, ones that work in the dark. Many have the ability to record to an SD card or directly to a computer so you can view the recording in the morning.
 

Nakamova

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Hi Katy, thanks for the update.

Sorry to hear about Andrew's seizure. I hope the med helps get them under control. It's great that you are keeping informed, and have picked up on your daughter's seizures too. Can you ask her to keep a journal to record any times she experiences unusual sensations? Partials can take a lot of different forms, so a journal would be helpful in determining the extent and frequency of her symptoms. When she is able to see a neuro that info will be useful especially when considering whether/how to treat them.
 
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Masterjen-Getting something like a baby video monitor is a great idea. I think I'll look into that. Thank-you for the advice.

Nakamova-Yes, the seizure he had on Jan 25 was before he was on medication. I hope the meds work too. The Ped said to give them a month to fully work, and if he has any break through seizures after that, I'm to contact him and he'll increase his dosage. Having my daughter keep a journal is a great idea. I'll talk to her about that and make sure that she follows through. I've been keeping one for Andrew too.

Thank-you everyone for taking the time to read and respond to my post. As a parent, this is all still pretty new, stressful and confusing in a lot of ways.
 
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Forgot to mention that I'm pretty sure he had another one this morning before waking up. I've been monitoring him closer in the hour or two after he goes to sleep/ before he wakes up when I'm able too. Part of my hyper-alertness. When he seems especially out of sorts, I have him sleep with us. This morning he seems really tired and slow, lying on the couch with a pillow and blanket watching a movie. He does have a bad cold though too. That could also be why he's so fatigued. Definitely going to start researching video monitors.
 

Nakamova

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Having a fever or infection can lower seizure threshold, so it's possible that his cold or fatigue triggered a seizure. As you know it can be tough to tell.

I hope you remember to take care of yourself too. :)
 
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