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My ds has these events. They only last a minute but they have an aura. He calls them headaches. I call them seizures per visual observations. First neuro called them delirium. One doctor calls them tics. Another neuro calls them a movement disorder. Another neuro called them partial complex seizures. Last neuro called them seizures and then changed his mind and gave me a referral to another doctor. Sleep study calls them night terrors? But he has them during the day.

 

We chose to medicate to make it stop. Depakote fixed it for years and then stopped working. Keppra works now but makes him difficult and takes so long to kick in. I have to use a neuro to get keppra prescription. They are getting worse every 15 min 24/7 every time they break through.

 

Have you seen this?

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Can you describe them?

 

My ds has these events. They only last a minute but they have an aura. He calls them headaches. I call them seizures per visual observations. First neuro called them delirium. One doctor calls them tics. Another neuro calls them a movement disorder. Another neuro called them partial complex seizures. Last neuro called them seizures and then changed his mind and gave me a referral to another doctor. Sleep study calls them night terrors? But he has them during the day.

 

We chose to medicate to make it stop. Depakote fixed it for years and then stopped working. Keppra works now but makes him difficult and takes so long to kick in. I have to use a neuro to get keppra prescription. They are getting worse every 15 min 24/7 every time they break through.

 

Have you seen this?

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I'd also like to know what they look like. I have seen the gamut of seizures through my work. I can't see mistaking a night terror for a seizure! That is truly just odd. I'd have run from that doctors office.

 

Night terrors happen at a certain point in a sleep cycle - usually 90 minutes after falling asleep. My son's are like clockwork! There were times he had them during naps when he was younger, but not often.

 

If there is a question of seizures, I'd definitely ask for a 24 hour EEG to be done. I know tons of people who live with chronic seizures and do okay, but if it were my child, I'd want to know for sure WTH was going on! Also, there are loads of different seizure meds and I've realized that everyone responds differently to each one. And none are without side effects. I'd want to know what type of seizure and how often before trying the meds.

 

Best of luck!!!

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I've never heard of night terrors happening while someone is awake so I don't think that is it. My oldest had night terrors and it was not seizure like. It involved screaming, thrashing and appearing to be awake, but the child is asleep. It would last for the upwards of 15 minutes.

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Additional info: The aura scares him and he runs for safe place. Then he does this repetitive movement thing for about 1 min and makes a noise. I have him drop to the ground so that he doesn't run into anything.

 

2 MRIs - normal

1 sleep study - showed up as parasomnia awakening possible night terrors

5 ekg - showed up once as a partial bundle block - repeated at children's hospital - everything fine

 

3 eegs - 1- one at ER - no event

2- children's hospital - no event

3- 3-day ambulatory at home - original neuro said yes put on Keppra - fixes it - doctor moves

 

New neuro says he does not see it on original 3 day eeg and put son in hospital for 1 week to retest and get off keppra - level is too high. Only one event in hospital - doctor says yes. Off meds - YES. DS gets sick one month later and now has them 1/hour 24/7. DS has one in doctor's office one month later and neuro says no and gives me referral.

 

Nothing else to tell. Have you seen this?

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Additional info: The aura scares him and he runs for safe place. Then he does this repetitive movement thing for about 1 min and makes a noise. I have him drop to the ground so that he doesn't run into anything.

 

2 MRIs - normal

1 sleep study - showed up as parasomnia awakening possible night terrors

5 ekg - showed up once as a partial bundle block - repeated at children's hospital - everything fine

 

3 eegs - 1- one at ER - no event

2- children's hospital - no event

3- 3-day ambulatory at home - original neuro said yes put on Keppra - fixes it - doctor moves

 

New neuro says he does not see it on original 3 day eeg and put son in hospital for 1 week to retest and get off keppra - level is too high. Only one event in hospital - doctor says yes. Off meds - YES. DS gets sick one month later and now has them 1/hour 24/7. DS has one in doctor's office one month later and neuro says no and gives me referral.

 

Nothing else to tell. Have you seen this?

 

That sounds more like tic to me. If you can TELL him to drop to the ground and he does this... then it's not a seizure. Someone cannot respond to you during a seizure. They cannot respond to commands.

 

Now, I HAVE dealt with two people that had "running" seizures. I don't really understand it. These were only determined by a very FANTASTIC psychiatrist. The running was actually part of the aura - I guess a fight or flight? What he had told me was the running preceeded the seizure. In the one persons situation, if he was stopped he would get incredibly violent and the whole situation would turn catastrophic. So I'm not clear where the line was drawn between aura and seizure. This reminds me slightly of that. I wish I could remember what exactly he called it. That individual moved out of my region, or I'd see if I could find a record of it :blink:

 

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Hi - I'm wondering if the sleep clinic folk were maybe sort of right with the night terror thing.. bear with me.

 

There is thinking that, the "hallucinations" experienced by schizophrenics are in actuality, wakeful dreaming. If I remember right, it is something along the lines of messed up dopamine interfering with sleep and dreaming cycles causing poeple to dream when awake. Auditory is more usual than visual but wonder if the sleep clinic people were eluding to that. Perhaps he is experiencing a waking night-terror 'cos of dopamine dysregulation due to PANDAS and is reacting with a stress induced tic or even OCD ritual.

 

I'll try and look for some links for that wakeful dreaming stuff when I get a chance....

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My sister has something similiar happen to her. She was diagnosed with Epilepsy as an adult but had seizures in her childhood which she grew out of and came back prior to menopause. She can tell it is about to happen before it starts. She gets a weird feeling right before. Do you happen to live near CT or Washington State?

 

I tell him to drop during the aura part. Then we try to keep him still during the seizure part. He's eyes open w-i-d-e during the seizure part and you cannot interrupt it.
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My ds has these events. They only last a minute but they have an aura. He calls them headaches. I call them seizures per visual observations. First neuro called them delirium. One doctor calls them tics. Another neuro calls them a movement disorder. Another neuro called them partial complex seizures. Last neuro called them seizures and then changed his mind and gave me a referral to another doctor. Sleep study calls them night terrors? But he has them during the day.

 

We chose to medicate to make it stop. Depakote fixed it for years and then stopped working. Keppra works now but makes him difficult and takes so long to kick in. I have to use a neuro to get keppra prescription. They are getting worse every 15 min 24/7 every time they break through.

 

Have you seen this?

 

My 7 yr old had seizures from when she was little. We first noticed them when she wsa 3 but she probably had them younger than that. Hers were where she just stared off for 5-10 seconds (no convulsions) although sometimes she would walk off or try to climb something. They had no aura that we know of. 48 hour video EEG showed that she was having hundreds a day and we could only see the ones that got long enough. I would see about 10-20 a day.

 

Depakote and Tranxene mixture was what finally stopped hers after trying many different types of meds. When she went gluten free, they went away so they now believe the gluten was causing them but of course we don't really know.

 

 

Susan

Edited by Suzan
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my daughter was on lamotrigine for mood but it is for epilepsy, and she had no cognitive or any other side effects.

she has a friend with epilepsy who is on it, and doing well.

also, what about going beyond the neuro's to an epileptologist?

 

hope it all gets sorted out

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My son has the same thing. 6 EEG's all show abnormal brain activity (seizures), but I have been told, like you: "yes it is", "no it isn't." It was affecting our son's moods (abnormal brain waves were in the frontotemporal lobes.) We are treating it is epilepsy with Lamictal (lamotrogine) which helps tremendously (took him off for one eeg, and it was really obvious it had been working, so we put him back on.) It didn't completely do the trick, and neurologist added trileptal (oxcarbazepine.) Another doctor has suggested taking him off, but I have no desire to do so, because it definitely helps.

 

It is possible these seizures/night terrors may be due to PANDAS, but I just can't take the chance anymore, and the meds he is taking are definitely helping.

 

BTW, he has not had night terrors in years, but did have them as a young child (he's 14 now.) But, he does walk and talk in his sleep occasionally. Again, this was helped with the seizure meds.

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They happen in stage 3 sleep. DS had zero stage 4 sleep and only 6.2% REM sleep. I thought maybe he had narcolepsy and then they could still be night terrors. But the doctors say no. Back to square 1. Last neuro is sleep specialist with interest in night seizures at level 4 epilepsy center.

 

Here is the plan: be thankful keppra works and start to treat pandas and hope all this will go away.

Thank you for taking the time to comment. Waiting for lab work and then go back to see Dr B.

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