Has anyone experienced or know anyone that has expe similar seizures?

Posted by dvintage @dvintage, Apr 14 8:52pm

My 9 year old son started having seizures when he was around 5 (that we know of). We have had EEGs MRIs and any and all testing done. They have yet to find anything wrong or any abnormal brain activity. He experiences what he calls tingling in his right arm and right leg when it happens (mostly right leg). The seizures tend to last only a second, or an hour and not really anywhere in between. He said it feels almost like a shock when it comes on but can not really describe it. He is fully aware and can answer detailed questions during it. He can walk if he absolutely has to but it causes his right leg to not function well. His right thigh will have a small spasm during it as well. It used to make him fall when he was younger, but as he has gotten older he will kind of act like he's going to fall but doesn't. Lately his right leg has been bothering him even when he is not having a seizure and his gate has been off almost all the time. Other then this issue he is very healthy, very active and athletic. He plays sports and does very well at them. He has had days where he has had upwards of 30 "quick " seizures (lasting only a second) and has had days where he has had 4 or 5 "long" seizures (lasting around an hour). An average day for him is a seizure at around 5am and another one around 5pm. 2 is the average but somedays he has 3 or 4, and some days only 1. It is a very rare occasion if he makes it 24 hours without a long seizure (once every couple of months maybe). We are trying to find someone out there with a similar case. He has tried several meds (like 7 probably) and a few seem to help but not stop them. And by help I mean instead of having seizures all day long he has a few a day. He also has had a VNS put in about a year ago and it has done nothing so far. We have no answers from our doctors even after several hospital stays, EEGs, a trip to Seattle ect. The reaction is always the same, kind of a shoulder shrug and a "we haven't seen this before" response.

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Chris Gautier OR Santosha | @santosha | May 6 6:51am

Hi @fraidyfreund
My accident was a different kind of accident at 5 years of age. I was at my grandfather's place in France in his small village and he unadvisedly left some medications in his bedroom (night table) where I was sleeping. I thought they were sweeties and put them in my mouth having a convulsion. When my mother found me in that state, she took me to the village hospital. But the doctor there had already much wine (it was a Sunday after lunchtime) and he did the wrong procedures, and I went into a comma. I was then transferred to a decent hospital in a bigger city in France. Back home, my mother has taken me to several doctors and there seemed to be no consequences of this accident. But when I became a teenager, the seizures (auras and complex partial seizures) started to appear. Differently from a tonic-clonic seizure, those seizures were pretty silent and light at that time and lasted very few seconds. When I was diagnosed with temporal lobe epilepsy in 2019 at the age of 48 years, one doctor said that my seizures took 7 years to manifest because there is a silent and latent period for epilepsy to develop itself.
Curious to know, how long after this car accident your son suffered, did this tonic-clonic seizure happen? Did it manifest in a short period of time after his car accident?
Chris (@santosha)

fraidyfreund | @fraidyfreund | May 6 9:01am

My son walked out of car that was a total loss without a scratch. Everything was fine till next morning he get a grand mal. Other than that seizure he never got more symptoms. 48 hr EEG revealed some spikes and video showed some eye fluttering after being induced by phototherapy. Although I never saw any flutters and still dont see it he was put on Depakote.

Chris Gautier OR Santosha | @santosha | May 7 6:56am

In reply to @fraidyfreund "My son walked out of car that was a total loss without a scratch. Everything was..." + (show)

Thank you @fraidyfreund for sharing this with us.
I am very sorry for this episode. Perhaps he had epilepsy before and this car accident has worsened his epilepsy?
As I have shared, I lived 35 years or more with epilepsy without knowing it. It was only after burnout that my epilepsy has shown its face clearly.
My best wishes!
Chris (@santosha)

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