13 year old with different types of seizures

jaysmom

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hi to everyone, tis sounds like a great place to get some info, support and feedback. glad to have found it.
my 13 yr old boy was diagnosed benign rolandic epilepsy a few years ago. he has different kinds of seizures like facial seizures ...zoneing out and speaking garbled up words....confusion to where he is and what he is doing....grand mal when sleeping etc. he is going for a repeat eeg this weekend as he has been having drop attacks also. no warning ~just loosing consiousness and hitting the floor, wetting himself. no convulsing.
we have tried the wait and see approach, the high vitamin appraoach, and now the tegretol twice a day. he has been on tegretol for a year now and although the seizures that he was having seem to be gone, he is still having these drop attack things. he has had 3 in the last year.
very frusterating.
i would love some input if you have some, nice to not be alone!
jays mom
 

skillefer

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I believe the drop attacks are called atonic seizures. It sounds like Jay has several different types of seizures. This actually isn't unusual. so he may need to be put on another medication as well. Welcome to CWE. :) Feel free to ask questions, chime in, or vent if you need to in the padded room. :) Oh! and check out the library here at the site. It has some great info on complimentary and alternative therapies. ANd check out the epilepsy 101 thread in my signature. It has some great info. on seizures.
 

jaysmom

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i thought that BRE was certain seizures at certain times...he sure isnt following the rules on that one. that is what is confusing. i try to read everything i can and understand them but the drop attacks are kinda freaky. hopefully get some more answers after this eeg on sunday. he has a real hard time staying asleep as well. falls asleep right away for the most part and then is up every couple hours, i wonder if there is seizures in the night that wakes him. that is comon with BRE i guess. any input on melatonin for sleeping?
 

sixpack

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Yes those drop attacks are terrifying!!!!! My daughter started pulling those last year. She used to just have complex partials. Her first was a tonic/clonic, but medicated it was complex partials. Then last year she started the atonic (drops), tonic/clonics and tonics. She was in the ER 3X in 8months from injuries due to atonic> To tell you I was freaked would be an understatement. She had another EEG in September which did, indeed, show atonics on the EEG. Her doc added her 3rd seizure med--Depakote ER. Since then she has had ZERO atonic, tonic/clonic or tonic seizures. Her complex partials have even become milder. Now she'll just run about the room aimlessly for a minute or less then she's fine. Today she went to the neuro and we are going to get her off one of the meds--Keppra. So now she'll only be on two meds.

So what your doc should do is maybe try a different med or add one to his tegretol. BTW Linds was on tegretol for a while. It lost it's efficacy after a while so we changed the meds.
 

jaysmom

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after having dealt with a few drop attacks, not quite so scary but the only problem i find is A, he gets hurt on the way down and B, he is the same hight as me and only 20 pounds lighter, i cant catch him and/or lift him when he is unconsious. last time he passed out in the garbage can in the bath room and he was all twisted up so i had to move him....he is getting to big!
 

sixpack

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I completely agree. Drops happen so darned fast. My daughter had a seizure on the stairs---6 staples to the head. She whacked her nose on her wooden footboard on the bed in the night---swollen and nearly broken nose. Then she walked into the family room and planted her face into the hardwood floor and broke one of her front upper teeth at the gum line. She needed oral surgery. There have been other drops but she was unhurt or I was there by her side when it happened. So I totally understand. That's why I've found the Depakote ER a Godsend. Her drops have stopped atleast for now.
 
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Just wanted to say hello and welcome to CWE!

I hope you find the support and information you need.

I wish you and your son seizure-free days ahead. :agree:

-Julie :)
 

jaysmom

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thank you julie, it is sure nice to know that there are other people in the world that you can relate too. been kinda lonely these last few years. sounds like you have your hands full too.
 

RobinN

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Hi Jaysmom - My daughter began to have seizures at the age of 14.
We went the med route and with each medication came different types of seizures.

Rebecca has tonic clonic seizures and now is med free. She is controlled better than when she was on AEDs with nutritional changes, and neurofeedback.

I agree it is a lonely place to be, and CWE is a great place to realize you are not alone.
 

jaysmom

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Hi Robin,
i have done so much reading that i get all confused....unfortunately, i live in a small town that is 4 hours away to the nearest eeg machine and i believe that i am about 12 hours away from childrens hospital where one can see a neurologist. there is one pediatrician here and that is our only option. it makes it real frusterating when you have multiple questions. jason has had 3 or 4 occasions where he is standing there and completely goes unconsious and hits the floor and sometimes wets himself. No convulsions though....unfortunately, i cant find anything to read on that, my family doc thinks it probably is not seizure activity and my pediatrician says yes, so off we go for another eeg to see what has changed since his last one. any reading i can do on it only talks about drop attacks. but that states that you dont loose consiousness, only muscle tone. he truly is out for the count for like 30 secs though. i am lost. i guess i will just have to wait till sunday when he gets his eeg and maybe some answers.
im glad that you daughter is off meds and feeling better. i have never herad of neurofeedback till today, a tid bit of info on that would be neat to read if you dont mind? what kind of nutritional changes did you need to make?
input is great!
jays mom, chrissy
 

Meetz1064

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You spoke

of melatonin for sleeping........and I use it. I happen to use it because my pineal gland no longer makes it, so I have to take it, period. (There's a cyst in my gland)...

And yes, it does help........I use 10 mcg I believe.....but I will be going up to 20 soon, I think........

Take care!

Meetz
:rock:
 

RobinN

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Hi Robin,
i have done so much reading that i get all confused....unfortunately, i live in a small town that is 4 hours away to the nearest eeg machine and i believe that i am about 12 hours away from childrens hospital where one can see a neurologist. there is one pediatrician here and that is our only option. it makes it real frusterating when you have multiple questions.
I can imagine.
I live in a big city and it is still difficult to find someone that will listen, and not just treat as if all are textbook cases. Each is unique and should be treated as such. If you have a good pediatrician, you should be okay with quite a lot you will find online and from some current books. Your pediatrician can request tests and medication if you find that necessary. It is highly recommended to stay on monotherapy if at all possible.

jason has had 3 or 4 occasions where he is standing there and completely goes unconsious and hits the floor and sometimes wets himself. No convulsions though....unfortunately, i cant find anything to read on that, my family doc thinks it probably is not seizure activity and my pediatrician says yes,
I learned that there are tonic seizures and there are clonic seizures. Then there are the type that my daughter has which are tonic clonic.
Tonic seizures are brief seizures (usually <60 seconds) consisting of the sudden onset of increased tone in the extensor muscles.7-9 If standing, the patient typically falls to the ground. These seizures are invariably longer than myoclonic seizures. Occasionally tonic seizures terminate with a clonic phase.

The degree to which consciousness is impaired is often difficult to assess. In seizures lasting longer than a few seconds, impairment of consciousness is usually apparent.

Postictal impairment with confusion, tiredness, and headache is common. The degree of postictal impairment is usually related to the duration of the seizure.

Electromyographic activity is dramatically increased in tonic seizures.

Tonic seizures are frequently seen in patients with the Lennox-Gastaut syndrome, a disorder consisting of mixed seizure types, mental retardation, and the EEG findings of a slow spike-and-wave pattern.10-12 Seizures are usually more frequent at night.
http://professionals.epilepsy.com/page/generalized_tonic.html

so off we go for another eeg to see what has changed since his last one.
Just know that EEGs are only a tool. Sometimes they just do not tell you what is going on. For example, my daughter had one that was positive (according to the neurologist) and she had three more that were negative.
She continued to have tonic clonic seizures. Just because they do not see activity it doesn't mean what is occuring isn't happening. My daughter's seizures seem to be triggered by a drop in blood sugar. This has taken 2 yrs to have someone listen to me, but we have finally had tests which confirm this. Just remember there are many many reasons for seizure episodes.

any reading i can do on it only talks about drop attacks. but that states that you dont loose consiousness, only muscle tone. he truly is out for the count for like 30 secs though. i am lost. i guess i will just have to wait till sunday when he gets his eeg and maybe some answers.
I think the above information from www.epilepsy.com explains this.

im glad that you daughter is off meds and feeling better.
I am too, though we are not out of the woods yet.
i have never herad of neurofeedback till today, a tid bit of info on that would be neat to read if you dont mind?
http://www.coping-with-epilepsy.com/forums/tags/neurofeedback.html
My daughter has been seen at:
www.eeginstitute.com

what kind of nutritional changes did you need to make?
http://www.coping-with-epilepsy.com/forums/tags/diet.html
http://www.coping-with-epilepsy.com/forums/tags/gard+diet.html
just to give you a little bit of reading :roflmao:

input is great!
jays mom, chrissy
I agree... glad you found us
 
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Hi :hello: Welcome to CWE. It's really great to have you here :) RobinN has shared some great links with you. I'd just encourage you to search through the library for alternative methods and therapies to try. I'd exhaust all of these before pursuing more meds.
 

brain

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Yes ... it will be worth it all - small things DO count!

:hello:

And welcome to CWE, it's strange you mention what
your son is going through, for it is awfully similar in a lot
of ways what I had went through when I was younger.
But I agree 100% in regards to Atonics; especially when
they happen without any warnings whatsoever - just
*Bang* out of the blue.

The greatest thing is that your son is being treated, as
it is been said - the earlier they catch it; the better the
future will be for children. Unfortunately, it wasn't for my
case (as I'm an "old hag" now - LOL!).

As for bed wetting - don't punish the child, make sure
the Doctor knows about it - for it is highly possible that
the child is having nocturnal in their sleep. I had to have
bed railings to keep me in my bed. It is ironic you had
posted this for I had been watching the old slides and
videos of myself since I was a baby and growing up, it
was there all the time, only they had missed it! But
consider yourself fortunate! Times have changed! If
there were such thing as a time warp machine, I'd surely
would have used it, it would have been worth the 12
hour drive; for it would have saved me much of the
"hellish" nightmares I've had to endure all in my life!

It is true that seizures can change, it can worsen, just
as much as it can be the opposite - where the child
can outgrow it ~ as I wished it were in my case!

So by all means ... go for it! It would be worth it all,
especially for your own little one!
 

jaysmom

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:hello:

And welcome to CWE, it's strange you mention what
your son is going through, for it is awfully similar in a lot
of ways what I had went through when I was younger.
But I agree 100% in regards to Atonics; especially when
they happen without any warnings whatsoever - just
*Bang* out of the blue.

The greatest thing is that your son is being treated, as
it is been said - the earlier they catch it; the better the
future will be for children. Unfortunately, it wasn't for my
case (as I'm an "old hag" now - LOL!).

As for bed wetting - don't punish the child, make sure
the Doctor knows about it - for it is highly possible that
the child is having nocturnal in their sleep. I had to have
bed railings to keep me in my bed. It is ironic you had
posted this for I had been watching the old slides and
videos of myself since I was a baby and growing up, it
was there all the time, only they had missed it! But
consider yourself fortunate! Times have changed! If
there were such thing as a time warp machine, I'd surely
would have used it, it would have been worth the 12
hour drive; for it would have saved me much of the
"hellish" nightmares I've had to endure all in my life!

It is true that seizures can change, it can worsen, just
as much as it can be the opposite - where the child
can outgrow it ~ as I wished it were in my case!

So by all means ... go for it! It would be worth it all,
especially for your own little one!
holy moly ladies, i have lots of new info to read. THANK YOU!
yes i do understand that an eeg isnt everything and may be wrong but we just cross our fingers and hope that it sheds a little more light. i thought that when diagnosed with one type of epilepsy that that is the way your seizures would be, i am sowly learnign that that isnt the case. jason rarely has the same seizure twice. i will take whatever info you send and research it till i get it, i really do appreciate the input.
as you say about the bed wetting, brain...i would never ever punish him for that, that is definately a red flad that something happened over the night. we told the pediatrician and like he said, no body saw so one would assume that a 10 year old(at the time) mostly likely had a seizure. we dont tell jason that though, he has a hard enough time trying to sleep. we dont want him to worry about falling asleep and haveing a seizure. we just shrugged it off and reminded him to not drink so much before bed. that was the best thing we could think of at the time. he understands now though. he is 13 on monday. i have to step out soon for a few hours now and so birthday shopping (it is only 8am here) and then i will check out the 'library' and see what there is.
thank you again!
 

swimmy

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Hi to JaysMom from another newbie! :hi5:
You have received some invaluable information here, some which has helped me...I knew seizures could change, but wasn't sure about it. This helps some with understanding things that have been going on with my simple partials.

Someone mentioned melatonin...I also take it, with the okay from my neurologist who said many of his patients take it. I have insomnia caused by the Lamictal, but the melatonin has completely wiped that out. Love the stuff!

I hope you have some clearer understanding as to what is going on with your son, and feel at home here--I certainly do!

Anita
 

RobinN

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I wanted to share a conversation I had with Sue Othmer when Rebecca was giving her medical history prior to starting neurofeedback. Sue asked if Rebecca had ever had bladder control issues. The truth was she did. Mostly due to excessive laughing... Not due to seizures.
Sue said that neurofeedback addressed this. I am not sure if it was specifically aimed at those with seizrues, or a brain that is not balanced. Commonly somehow the two go hand in hand.

Rebecca has not had any trouble since beginning NFB.
 

jaysmom

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hi swimmy,
yes great info comin in....i mentioned melatonin as i know a few people and kids that take it and love it. they dont have seizure issues though. i will talk to the doc next time we are in his office. i think it will be worthwhile for jason. poor kid needs more sleep and then perhaps the seizures would back off too. being fatigued sure doesnt help heh? jason is horrified to take another med though. he loves the tegretol as he has no side effects from it and he feels it helps him. we are trying herbal tea before bed and that seems to make a difference for him. normally he falls asleep fine but cant stay asleep. he wakes every couple hours all night. the tea helps him relax more.
 

swimmy

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Hi jaysmom,

Herbal tea is wonderful stuff, isn't it? In fact I think after I post this I'm going to go make me a mug of it!

Regarding the melatonin, I should add that I get a lot of seizure activity when I'm interrupted during sleep. It happens both when I'm interrupted unintentionally (phone call or alarm), as well as when I wake up naturally. When I started taking the melatonin, waking up in the mornng was no longer an issue. I didn't feel sleepy or groggy either, unless I was up during the night for an extended period some reason.
I still get the seizure activity when I nap during the day, but I don't take melatonin at that time.
Anyway, I hope your doctor approves of it's use and Jason can find some relief!
 

Bernard

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