Glued to the Video Monitor

[Kerum]

I introduced myself in "the Foyer" a little earlier today. I'm not sure if I can tell a short story...LOL. First seizure was a couple of minutes long at a friends house. The night before his "sleep deprived" EEG, he had a 15+ minute seizure that started out as a complex partial and caused a secondary generalized Tonic-Clonic. SCARY stuff...and even scarier when I found out that this was considered dangerous.

Two known breakthrough seizures last summer and his meds were bumped up. No known break through seizures since then, but his seizures have always happened right after falling asleep.

About 4-5 weeks ago, he stumbled down the stairs saying he was scared but couldn't say what he was scared of. He wasn't using his right hand and when I turned the light on, the right side of his face was drooping like he'd had a stroke. I knew it had been a seizure and researched it to make sure. Todd's Paralysis from what I understand. Called Neuro the next day (a Friday) and was called back with a squeezed in EEG appt for that Monday. No increase in meds though.

This past Monday, I got a call from his teacher at school and she said something was wrong with him. She described what was happening and it sounded like a different kind of seizure. Called my husband to get him from school (I was 40 minutes away and wasn't sure if it would turn into another one at school). Called neuro and wasn't called back until the next day. They increased his meds and we gave that first increase to him on Wednesday night.

Tonight, as I'm looking around these forums, I saw him having another seizure on the video monitor (Thank God my husband went out and bought one before he left on a 2 week work trip to Japan!!!). Went up there and he seized for about 2 minutes. I think he would have rolled back over to go to sleep since he almost did, but since I was there talking to him he sat up. (I feel that if he CAN tell that I'm there or at least SOMEONE is there, that it might make him feel more comfortable...sort of like someone in a coma). He had the same thing with the paralysis, I made sure he was ok and had him drink some water and then told him he could go back to sleep if he wanted.

Now, I am thinking that he may have been having seizures all along and we just didn't know it. There were no loud sounds on the monitor (he sometimes has a "hiccuping" noise or gagging noise during his seizures) and it just sounded like snoring when I got to the room.

I don't understand why his neuro has never done a sleep EEG like all night. I also want another MRI done to make sure nothing else is going on. He had white spots on the left side of his brain in the first one. His EEG shows a temporal parietal focus. When we are there with him in the room, the screen shows a TON of squiggly lines. HUGE. I wonder if it's just the way the screen is situated. Wouldn't they tell us if he's having seizure activity that much?

Thanks for reading this far if you got this far! I know that most kids outgrown their seizures. Still hoping he does, but have been told that his chances are low with the abnormal MRI.

 

[Nakamova]

These are all good questions to ask his neurologist. Clearly your son's seizures aren't being controlled well by the med/dosage that he is on. They need to be re-evaluated. As for the "squiggly lines" on his EEG -- they aren't necessarily abnormal. Squiggly lines show up at different times for different reasons, not all of them seizure-related. What's most important are the actual clinical seizures your son is having, and finding a way to control them. Often it can take trying more than one medication before finding one that does the trick. You may also want to look into neurofeedback. More info here: http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/

 

[Maidenminx]

For what it's worth, my understanding of eeg's is as follows. All eeg's create wiggly lines, even in neuro typical people. In a normally functioning brain will produce evenly spaced peaks in the peaks of the wiggles. Seizure activity will be more erratic.

 

[Kerum]

I had assumed the EEG lines were normal until I started researching on the internet and saw pictures of abnormal EEGs during seizures. I figured the brain did crazy things during sleep.

I tried to post a link, but it wouldn't let me, so I can't show you an example. :-(

Again, it may be nothing. I hate doing medical research on the internet, but appts are always so far away and if I didn't do some research, I wouldn't know what to ask about, etc. I am usually not a worrisome mom...LOL...but I think right now I seem like a basket case!

I do think my son's neuro is good at what he does, but I also know that he's the only one in the area that takes Tricare. "In the area" means the next closest one is 76 miles away. He's busy and it has always seemed like our son was well-controlled, my gut is telling me that we were probably wrong to assume that. I wonder if a longer EEG wouldn't tell us more or maybe uncover something we didn't know about. The nighttime ones scare me since I have no way of knowing if he's having one right now when I'm asleep. It's almost midnight my time and I hate going to sleep right now. He's had a couple of other episodes where I see him tense up or have a few jerks and then he rolls over and everything is calm for a bit, then it happens again. An overnight EEG would tell me if I was worrying for nothing or if these episodes are something. Sigh...

 

[Nakamova]

I agree that you should push for an overnight EEG, and/or a sooner appointment with his neuro. I know how frustrating it can be trying to get the neurologist to talk to you between appointments, but it can't hurt to be aggressive about getting in touch -- and it may well help with your son's health and your peace of mind.

 

[donnajane]

Thankyou so much for sharing your sons experience. I have a 16month old with at this stage undiagnosed seizures. He is not on medication but has had some pretty scary ones happening. He had one, I think I posted re it, about 2 weeks ago which sounded a bit similar to your sons. When he woke up his left hand was stuck on his face his eyes started to roll and he couldn't stand etc. His carers at childcare helped him stand and he stood there not moving at all for quite a few minutes, hand still over his eye. When he did eventually move he took a step and fell to the ground and the child care worker said it was like he didn't know how to get up. His was not right for quite awhile.They said it was so strange like he had had a mini stroke. In the past his events have been smaller and a variety of seizure types. So far we have had 5 EEG's 4 all OK and on the 5th they found he had a slowing of brain waves on the back right of his brain, his nureo thinks that what might be causing why he sometimes has issues with the left side of his body and his eyes also rolled back once or twice with the flashing lights but he said he could not see much difference in his brain waves during these episodes. He is booked for an MRI on 13th JUly. We asked Nureo to push it earlier but so far no luck. His Nureo thinks his lattest longer version was either his brain not waking up properly or a longer seizure. Its pretty scary stuff to us. I borrowed a night monitor for awhile and it was a real insight watching how much he moved around in bed, we knew he had very broken sleep but now we could see why. I have now ordered one and am going to try an record what he is doing to show his Nureo.
I hope you can get some answers with your son soon.
Donnajane