12yo male diagnosed with seizures but experiencing strange behavior

Posted by mgashaj @mgashaj, Wed, Sep 25 9:17am

12yo male with no family history of chronic seizures was diagnosed by his doctor with chronic seizures. His last episode was him sitting at a dinner table, when all of the sudden he experienced what he believed to be a bright light coming towards him. He completely zoned out, terrified of this light approaching him, and was drenched in sweat in the following minutes. He did not experience a seizure at this time, as his family was nearby him and were able to speak to him and calm him down. Has anyone had a similar experience? This is very strange behavior, and we believe there may be something else to it other than chronic seizures.

Some additional information: the child also experienced a very short migraine like head pain immediately after the “bright light”.

Liked by Leonard

Good Morning, first of all sorry your family has to go through this,… just wanted to let you know you are not alone my son when he was 7 or 8 started seeing strange things & having strange behaviors (seeing bugs in drinking cups, opening all the cabinet doors ect…) After he was placed on seizure meds this seemed to get better. But it has been a long worrisome journey & it is not over…. So keep your heads lifted up & wishing you and your family the best!!!!

Liked by Lisa Lucier, Leonard

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@caseybach

Good Morning, first of all sorry your family has to go through this,… just wanted to let you know you are not alone my son when he was 7 or 8 started seeing strange things & having strange behaviors (seeing bugs in drinking cups, opening all the cabinet doors ect…) After he was placed on seizure meds this seemed to get better. But it has been a long worrisome journey & it is not over…. So keep your heads lifted up & wishing you and your family the best!!!!

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What was the diagnosis and medication if you dont mind me asking?

Liked by Leonard

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He has been on several medications since then the latest three are onfi, keppra, oxycarbazepine. Dr. says Intractable seizures mainly from the right side. However, I am not buying that diagnosis yet…he's only 15.

Liked by Lisa Lucier, Leonard

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@mgashaj
Hi there,
Although numerous things may cause one to see lights seizures are certainly a possibility.
I’ve had Epilepsy for 52 years so my mind is more geared towards the possibility of seizures.
The symptoms you describe are consistent with a Focal Aware Seizure (old terminology “Simple Partial”) Did he have any other symptoms? Did he seem to be aware of his surroundings or was he able to communicate? Is he on any seizure medication? Has he had an EEG? What was the doctors diagnosis? Can you describe any other seizures if he’s had any previously.
Good luck,
Jake

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He was on on Keppra for 18 months (full dose for 12 months and half does for 6 months) and stopped 6 weeks ago. He has had multipe EEGs, doctors have confirmed nothing suspicious in any of them, and have given no specific diagnosis. His last seizure was in March of 2018, and the seizures then consisted of lost speech, speaking nonsense, eyes rolling back, and shaking. This new episode he had the other day was the only one that consisted of the bright light & sweating. Thank you in advance for your help!

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@mgashaj

He was on on Keppra for 18 months (full dose for 12 months and half does for 6 months) and stopped 6 weeks ago. He has had multipe EEGs, doctors have confirmed nothing suspicious in any of them, and have given no specific diagnosis. His last seizure was in March of 2018, and the seizures then consisted of lost speech, speaking nonsense, eyes rolling back, and shaking. This new episode he had the other day was the only one that consisted of the bright light & sweating. Thank you in advance for your help!

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@mgashaj
I can’t help but wonder if the discontinuation of the Keppra 6 weeks ago played a role in his latest seizure. Close to half of seizure patients have Post-Ictal headaches. His apparent normal EEG’s don’t mean he doesn’t have a seizure disorder. Even if he had a seizure hours prior to the EEG recording any electrical seizure activity would be very rare. Approximately half of all EEG’s in seizure patients are normal even though these patients have seizures. Many have seizure activity without experiencing obvious seizure symptoms. I’m assuming your son’s EEG’s were Routine office ones. For more definitive results a sleep deprived EEG where the person stays up the night before the test or maybe an Ambulatory EEG that records all day and night, perhaps longer, or the gold standard Video Telemetry, EEG and video for a few days to a week or so should be the most beneficial.
Perhaps someone on these Epilepsy Forums will have some ideas.
https://www.epilepsy.com/
https://www.coping-with-epilepsy.com/
Jake

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@caseybach

He has been on several medications since then the latest three are onfi, keppra, oxycarbazepine. Dr. says Intractable seizures mainly from the right side. However, I am not buying that diagnosis yet…he's only 15.

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Hi, @caseybach – how are your son's current meds working for him? Is he experiencing any side effects from them?

Hoping that @crstyday40 @dawn_giacabazi @patrassi will have some perspectives to share about your son and his diagnosis with chronic seizures and the recent experience of a bright light coming toward him and getting very sweaty.

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