Video EEG

[Suman]

Update:

With 750 mg of Keppra twice a day, and 50 mg Seroquel twice a day, my son continues to have tonic clonics every 8th day. The neurologist wants to increase the Keppra as much as our son can tolerate. This is the max that he can..
The other options given were - Briviact, Phenobarbital.

This time the neurologist told us though my son's seizures were originating in the pre frontal cortex, they quickly spread to all parts if the brain.

He also added that in general people with autism, when the brain undergoes a change from puberty to adulthood, seizures may happen. What no ones knows if these episodes will stop or continue.

He ruled out CBD. The internet gives all kinds of information, I'm not sure what to do. I want to take him off of all the AEDs. I feel there is no point in giving the AEDs when he continues to have seizures and bad side effects.

Thank you for reading.. that was a mom's ramble!

 

[Phils mum]

Hi Suman,
I really feel for you, we are in exactly the same position with our 25yr old non verbal autistic son, I know we have corresponded before. He is currently on keppra, vimpat & tegretol, they all have the side effects and seizures seem worse than ever. The keppra seems to have a little control over seizures but the rage is very hard to live with. We tried to change to vimpat but the grand mal came back, however the vimpat has calmed his rage episodes, hence we are on all 3 meds still.
He has developed nasty partial seizures though which he has every day, and now has to wear pull ups due to loss of bladder control, we also have grand mal about every 8 days.
I would like to take him off meds as well, but I'm just too scared.
I keep reading everyone's great posts here & trying to tweak things, he finally had an MRI which came back normal, EEG was very abnormal - showed front left temporal lobe seizures - not that it helps knowing that.

 

[Suman]

Karen,

We are in so similar positions, wish there was something to wave away the seizures. My son is bigger than me and my husband and when he gets into a rage, I gotta run and protect myself in my car. My son was such a gentle boy, with a big smile on his face. I feel so bad that on my hand I give him all the meds to swallow and on the other I complain about the side effects!
Yes I can totally relate to taking off the meds. and being scared. I tell myself every day, I'm scared already, what worse can happen? Then again, just because I'm scared, I still need to be level headed and do the 'right thing'. I'm still searching for the 'right thing'. Guess I ought to take a stance and make it the 'right thing'.. one day when I'm smart enough to have and understood the research that's been done.

Sorry guys.. that was another ramble and am too peeved to 'proof read'. Any teachers out there.. bet you're thinking 'proof reading id dead'!!

-Suman

 

[Phils mum]

Hi Suman,
Yes it's very frustrating, even sadder that your son used to be passive & happy. Is he 'nasty' all the time? We also had a passive happy boy until seizures/meds, it took him awhile to get used to Vimpat but it has definitely helped temper the keppra rage - we still get rage but only for short bursts. Another symptom we have is swollen cheek/temple after meds. Neuro keeps telling me he has hit his head but I know this is not true, the swelling comes and goes - I have recently discovered that this maybe an uncommon side effect of medication, but I don't know which one that he is on that is doing it.
Anyway we just have to keep going and hope to land in a better place soon.
Take care,
Karen ☺