Laughing seizures

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My son has just been diagnosed Benign Focal Epilepsy and whenever has a seizure his upper body goes stiff , his head jerks to the side his eyelashes flutter and it looks as if he is laughing , he is going back to school tomorrow for half days after having nearly 4 weeks off . It has been trial and error with the meds he was having 3 drops of Clonazepan morning and night and they were literally sucking the life right out of him, he was so drowsy and dizzy there was no way he could function properly at school so now i have had to cut it back to 2 drops what a difference , he is more alert but still dizzy now and then , he is also on 18 ml of tegretol morning and night ,the clonazepan is just a coverage until the tegretol kicks in . Anyway i am worried sick ,about sending him back to school incase he has a seizure in the playground and that the other kids will just think he is laughing and being silly and he will lose his balance and hit his head . I know i cannot wrap him up in cotton wool forever his teacher knows what to look out for and she has told all the kids in the class ,and the Principle has informned all of the other teachers , but i still cannot shake this worrying feeling i have . I was wondering if anyone else has experienced these sorts of seizures where the child looks like they are laughing ?
 

donnajane

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I can understand how scary it is for you. My little man has more of the "silent" seziures which don't draw attention although he has also had drop seziures and tonic clonic.
Have you spoken to his teacher re your fears? I am a teacher and had one of my 16 yr old students have his first seizure, a month ago, in class, a tonic clonic. He was so embaressed and worried about what the other kids would think so I asked him if he would like me to speak to the class which I did and he said he couldn't believe how much support the other kids gave him and how they were worried for him not laughing at him. For me I don't really think kids mean to be nasty or laugh it's just their way of handling things they don't understand or which make them scared or uncomfortable and once they understand they are way more accepting. Just an idea.
Hope he has a good day back at school.
Donna
 
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Hi Donnajane,

Thank you for replying to my post he had a good day at school even though he is still very tired from the meds , the first aid teacher came and seen me today and asked me was it ok if he put a photo of my Son in the staff room and sick bay with a description of what sort of seizures he is having to alert all the teachers and to put an action plan in place , i was so happy about this it has given me peace of mind as i was a bit teary eyed this morning at the thought of him going back to school and that i wouldnt be there to help him if he had another sezuire .I seen the other children showing concern for my Son as to why he has be absent from school for so long ,and he said he told them he was having seizures and they thought that was very interesting but his teacher had filled them in as well and told the kids to alert her if they see him having one . I never knew that there were so many types of seizures out there by silent ones do you mean absent seizures ? Thanks so much for sharing your experiences with me it has given me peace of mind to know that i am not going through this alone .

Many Blessings to you Loap:)
 

donnajane

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That is wonderful news about him having a great day. My little man has absence ones, or his eyes will just flutter briefly, an uncontrolled spasm at times, becomes confused. Other times he has what his nureo calls a brown out where he can't do something as one part of his brain is basically "blacked" out. Often it's his walking which thankfully comes good after 30minutes (has gone on for 24hrs though), his speech so he looks normal, acts normal, can understand you but can't speak it becomes total bable - usually you can understnad a lot of what he says. Most people think of seziures as Tonic Clonics, I know I did until my son started having different types of seizures. He's only 28months so at the moment things like this are not obvious but as he gets older if it is still happening it will be and that is my worry that we help him as much as we can now to understand what is happening to hopefully help these events become less.
Once again so glad he had a great day and kids do understand and a lot more caring than I think we give them credit for if they know what is going on.
Donna
 

KarenB

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Livingonaprayer, when you say "laughing seizure" -- do you mean he is actually making giggling or laughing sounds, or is his face freezing into a grimace/grin kind of thing but he's silent??

The reason I'm asking is that giggling spells (when nothing is funny) is a kind of seizure called gelastic. We had to deal with those last year. I can give a whole lot more info, but just wanted to get more info on what's actually happening to him when he has a seizure.
 
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Livingonaprayer, when you say "laughing seizure" -- do you mean he is actually making giggling or laughing sounds, or is his face freezing into a grimace/grin kind of thing but he's silent??

The reason I'm asking is that giggling spells (when nothing is funny) is a kind of seizure called gelastic. We had to deal with those last year. I can give a whole lot more info, but just wanted to get more info on what's actually happening to him when he has a seizure.
Hi Karen ,

What happens is he jerks to one side his eyelids flutter and makes a laughing sound , his face actually looks relaxed, but after it his breathing sounds as if he is phsycially drained for a about 20 seconds . When the first seizure happened i thought he was actually playing around at first but i knew something wasnt right when he started to lose his balance that was the most frightening part when dealing with these sort of seizures .
 

KarenB

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OK, well that doesn't sound like a gelastic as much as a tonic seizure, with the upper part of his body going stiff. The deep breathing afterward is probably because his lungs have constricted during the seizure and he's getting his breath back. Sometimes a seizure is preceded by a sort of vocalization -- although I haven't heard of a giggle before. When our son has a tonic, he'll scream out right as the seizure starts, and then go stiff (but if he's standing up, sometimes he can still stand and even walk a little bit), and then after (usually just about 10 seconds) he sort of melts to the floor. Often he'll want to sleep for an hour or so after even a brief episode. Fortunately, have brought them under control with the Ketogenic diet and Zonegran. No seizures since January! :)
 
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hi Karen ,

My son has just started taking tegretol tablets 2 weeks ago and i have only seen him have one seizuire since, How old is your little one ? My Son is 10 and has to have a brain scan in august apparently this one looks further into the brain to find out for sure what is cauing ther seizures to happen as he already had one last year that came back clear . He also had a generalised seizuire which is a grand mal That was the most frightenng ever . I truly never realised how many different types of seuzres there are .
 

KarenB

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Jonathan is 9 years old. He began having seizures at age one (grand mal or tonic-clonic). The seizures were controlled for 3 1/2 years with Topomax (only one seizure during that time). Then, when he was 5, they came back again, and gradually got worse and worse. Went through numerous meds, to no avail. That's when he started having the tonic seizures in addition to the grand mal. Finally put him on the Ketogenic diet, and that gave him seizure freedom for one year and even med free. Then he had a couple serious intestinal viral illnesses and had a relapse (because he wasn't absorbing the fats correctly, probably, but there may have also been some sort of brain involvement with the virus. All kinds of seizures -- tonic-clonic (grand mal), gelastic seizures (giggling spells when nothing funny, sometimes interspersed with crying), and tonic seizures. Anyway, it took us 10 months of tweaking the diet and working with different meds, but finally have seizure freedom again, praise the Lord!!
 
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Dear Karen ,

I am so happy to here that your son Jonathan is seizure free, i also have a son namned Jonathan who is 6 it it my eldest son Ethan who has the epilepsy we have just been back to the doctors today as he has been suffering from blurred vison headaches and dizzyness and i am wondering if it is a side effect from the tegretol tablets that he has been taking for 3 weeks now . He hasnt been sleeping properly either ,and he said that his breathing felt funny as well .I have to take him back later today and have a blood test done as well . I am being told many different things from my gp and the hospital , they are saying it is a childhood form of epilesy and they are using different terms have you ever heard of a generalised seizure? it is another term for grand mal apparently, it is very confusing to me , they say my son is having partial focal seizuires and one generalised seizure . I have never heard of the medication your son has been taking i wonder if that is because we are in different countries ? My Son has put on alot of weight as he was previoulsy on tegretol liquid before the tablets , the hospital are very concerned so i have to watch what he eats and make sure he is getting plenty of excercise not that i wast doing that before but you know how it is . I just cant wait until he has this brain scan in august so we will know for sure what is actually causing these seizures to happen the Doctors said he would be sezuire free on the tablets but he said he is still having them at school and i seen him have one at home . I know its all trial and error with the meds as well . All we can do is take each day as it comes . :)
 

KarenB

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A generalized seizure involves the whole brain, while a partial seizure involves just one part. Usually, in a generalized seizure, it will start in one section of the brain (in Jon's case, it's usually his right temporal lobe) and then radiate to other parts of the brain.

Generalized seizures can be tonic-clonic (grand mal), absence seizures (blank stare), tonic seizures (body goes rigid), clonic (jerking movements), and atonic (loss of muscle tone -- sometimes results in drop seizures).

Zonegran (Zonisamide) is a fairly new medication. But it is now approved in the U.S., Great Britain, not sure about Canada or Australia. It's action is quite different from other medications, which may explain why it works for Jon, when others don't. I believe it's generally used as an adjunct med (in combo with other meds), but in Jon's case, it's his only med (along with the Ketogenic diet -- which is a medical treatment, often brings seizure freedom without any meds).

Tegretol is an old med, but does come with some nasty side effects. Jon was never on Tegretol, but on Trileptal, which I think is in the same family (he had horrible side effects with it, and it didn't help his seizures).

It's possible that the brain scan (MRI) will not show anything conclusive. That happens more often than not with epilepsy.
 
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Hi Karen ,

My doctor just rang me Ethans dose of 400ml tegretol is to high , so now we have to reduce the dosage , thanks for the descripton of the seizures you really made it all easy to understand Ethans last brain scan was in August last year before he was diagnosed and it was clear yet prior to it he kept telling me he was twitching inside his head and lost feeling in his right arm , have you ever heard of this before ? , I am going to ask my doc about zonegram if it is available over here . Ethan also said to me that his right eye feels funny before he has a seizure as well .
 

donnajane

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Interesting read re Tegretol. We saw the Nureo again on Monday and he has taken our little man off Clobazam so far not so great as it was used for his night time "events" but hoping it is just a settling period. Nureo did say he wondered if Tegretol was working with him and asked me all I could answer was that to us it allowed part of his brain to open that was closed before but that was over a year ago now and maybe that was going to happen anyway. He is still on the Tegretol at the moment. I have written another post re his appointment.
Lets us know how you go with zonegram, I would be very interested.
Donna
 

KarenB

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As far as the twitching inside his head and his arm going numb, I haven't heard of that, but I bet if you go up the the "Kitchen" section here, and ask that question, you'll get a good response.

As far as Zonegran -- different seizure medications work (or don't work) for different patients. I think it has something to do with what is causing the seizures to begin with. So...what works for Jon may not work for other kids.

Also...just yesterday we went to see the medical team, and Jon had lab work before we went, but they forgot to do the electrolyte test, so they did it at the hospital, but we saw the neuro and nutritionist while we were waiting for it to come back. (Zonegran can cause acidosis, but we weren't too worried, because he's been on it now for about 9 months, and had acidosis in the beginning, but it had come under control). Anyway, so after we saw all the docs, and were paying to bill and collecting his meds, the nurse came and said the blood test was back, so went in to see the nutritionist again, and it turns out that his bicarb level was 17!! That's pretty bad acidosis. Of course, it was the end of the working day, and the neuro wasn't available, so we couldn't discuss with him whether we should lower the dose of Zonegran or not. So, the nutritionist gave us a (temporary) plan of increasing his fluid intake (even more), adding in a little more baking soda, and hoping for the best. If we can't get his bicarb levels back up, will probably need to reduce the Zonegran. So, thankfully we have the Ketogenic diet to fall back on.
 
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Interesting read re Tegretol. We saw the Nureo again on Monday and he has taken our little man off Clobazam so far not so great as it was used for his night time "events" but hoping it is just a settling period. Nureo did say he wondered if Tegretol was working with him and asked me all I could answer was that to us it allowed part of his brain to open that was closed before but that was over a year ago now and maybe that was going to happen anyway. He is still on the Tegretol at the moment. I have written another post re his appointment.
Lets us know how you go with zonegram, I would be very interested.
Donna
HI Donna ,

Is your Son :e: having any side affects on tegretol ?
 
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Interesting read re Tegretol. We saw the Nureo again on Monday and he has taken our little man off Clobazam so far not so great as it was used for his night time "events" but hoping it is just a settling period. Nureo did say he wondered if Tegretol was working with him and asked me all I could answer was that to us it allowed part of his brain to open that was closed before but that was over a year ago now and maybe that was going to happen anyway. He is still on the Tegretol at the moment. I have written another post re his appointment.
Lets us know how you go with zonegram, I would be very interested.
Donna
HI Donna ,

Is your Son having any side affects on tegretol ?
 
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As far as the twitching inside his head and his arm going numb, I haven't heard of that, but I bet if you go up the the "Kitchen" section here, and ask that question, you'll get a good response.

As far as Zonegran -- different seizure medications work (or don't work) for different patients. I think it has something to do with what is causing the seizures to begin with. So...what works for Jon may not work for other kids.

Also...just yesterday we went to see the medical team, and Jon had lab work before we went, but they forgot to do the electrolyte test, so they did it at the hospital, but we saw the neuro and nutritionist while we were waiting for it to come back. (Zonegran can cause acidosis, but we weren't too worried, because he's been on it now for about 9 months, and had acidosis in the beginning, but it had come under control). Anyway, so after we saw all the docs, and were paying to bill and collecting his meds, the nurse came and said the blood test was back, so went in to see the nutritionist again, and it turns out that his bicarb level was 17!! That's pretty bad acidosis. Of course, it was the end of the working day, and the neuro wasn't available, so we couldn't discuss with him whether we should lower the dose of Zonegran or not. So, the nutritionist gave us a (temporary) plan of increasing his fluid intake (even more), adding in a little more baking soda, and hoping for the best. If we can't get his bicarb levels back up, will probably need to reduce the Zonegran. So, thankfully we have the Ketogenic diet to fall back on.
Hi Karen ,

I have never heard of acidosis is it to much acid in the body? Ethan has had to have the tegretol reduced , from 800mg to 600mg, i took him back for more blood work first thing in the morning before he had his dose and it came back at 47 the hospital is saying to me that is normal , yet my local gp is saying that the first blood test he had done halfway through his dose(6 hours apart) is to high , and he told me to reduce it by 200ml , and the hospital didnt want to and i said to the doctor from the hospital well why is he having blurred vison dizzyness losing balance? and she said sometimes tegretol does that ,then she said ok reduce it by 200mg . I am so confused i dont want to to reduce the medication if he is going to have more seizures yet i dont want to keep him on it if it is causing him to have these side effects .
 

KarenB

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Yes, acidosis means too much acid in the body. Two seizure meds -- Topomax and Zonegran can cause this problem. It can be quite serious -- leaching calcium from the bones, causing extreme fatique, and can even cause seizures.

As far as the Tegretol, I know what you're saying. We don't want the dangerous side effects, yet we don't want the seizures either. I think I'd go ahead with lowering the dose, though. If meds are at toxic level -- that can be pretty serious. We've had that happen two different times with two different meds, and both times, Jon had serious and permanent complications.
 

donnajane

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Its hard to day if the Tegretol is causing some of his strange behaviors and even his Neurologist is unsure. All we know is that when he initially started it it was like it opened a door in his brain that was closed before. But this may have been going to happen anyway.
I think the Neurologist might start to wean him off the Tegretol when we see him next in November to "see" what happens. I will admit I will be a bit nervous if he does but also think it might be worthwhile to see what happens over a few months if the seizures get worse again and if he closes up even more.

Such a trial and error to get things right but well worth it if it helps our little guy reach his full potential.
Donna
 
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