Ok i read your description again. Seems your concern is with treatment not hte detection? An EEG will tell you rather well what type of seizure it is and where it is localized. The problem is, that information isnt really enough to find the best medication (although it can help). The problem is with the medications and knowing ahead of time what will be most effective. This isnt so much an issue with detecting the type of seizure however and has more to do with personal biochemistry.
I'm a bit confused with what exactly your concerns with current detection methods are. An EEG is a pretty definitive tool for pinpointing the exact type (classification) of a seizure and is remarkably hard to misread (A layperson can read an EEG with about 15 minutes of training for differentiating the types of seizures). Is your main complaint the lack of treatment, not detection, or is it with the actual electrodes which are often pulled off by autistics as you remarked?
My son started hitting and biting himself I think around 3 1/2 years old, yeast treatments have finally made the head punching and slapping go away completely, but he still bites himself. He is 6 now. When did you notice his first seizure? My son has them usually during sleep, if he is awake the seizures make him angry for a few hours or longer.
@KaiserVadin Atonic are very tricky seizures. Lamictal, Klonipin, depakote and sometimes Keppra, are used for atonic seizures. Often, in some kind of combination or with adjunct therapies. Have U seen a doctor?
aww poor jamie, he's so sweet, i've seen some videos of him. i have aspergers so i know what its like to have autism. jamies a trooper! tell him i said hello! :)
Oh Kim, its so wonderful how you calmly let him know, "I've got you" and then reassure him with your hands-on and your voice. Folks that have never had a seizure may not realize how VITAL that is. Someone reacting frantically or screaming might actually make the seizure worse and certainly scare or embarrass the person seizing. His eyes are so filled with love when he looks at you.
Yes this may be related to the medication- new types of epilepsy commonly occur with them, absence seizures and more. That only shows are insufficiently tailored these drugs are. There is also something called kindling. A seizure may increase the likelihood that more seizures will occur. Repeated stimulation "lowers the threshold" for more seizures to occur. In the kindling model, seizures begin to occur spontaneously after repeated subconvulsive stimuli.
@Skymaker69 Interesting!! Doctor just added low dose of depakote for now, until we get him into a sleep study. Still waiting to hear from the sleep study people...referral was made by neurologist. Depakote, however, makes me nervous, as it caused hyperammonia in Jamey last time he was on it...but it's good for atonic seizures...maybe lactalose will counter hyperammonia?
@monjanse. He started punching head around 2 years old. Since then, he's had over 23 behavioral assessments, countless interventions, been on clonidine, prozac, naltrexone, risperdol, etc...etc...What we do know is continual PRO-active interventions, doing ALL we can to keep him comfortable seem to at least keep the punching minimal, unless he gets sick. We're trying HTP and other things natural again, so we'll see how that goes. Very complex, multiple antecedents that fluctuate daily.
He looks so scared when you're walking him to the kitchen - you can tell he just wants his Mom. The look on his face broke my heart. But luckily he recoverd quite quickly and was able to enjoy dinner with your family. I don't want to pry, but what type of Epilepsy does he have?
@MiraculousMoments He used to have just absence seizures, then some myoclonic types, but very well controlled. I think years of head punching has worsened seizure disorder. Miraculously, medical exams never show serious damage. That's a miracle. Even docs can't explain it. Though, i'm sure there's slight concussions or soft tissue issues. We aggressively mitigate injuries, so hopefully, that has helped reduce damage. Now, appears to have mixed seizure types. Come and go, just like his SIB!
HI KIM my 5yr old does the same thing after waking up.He is on keppra and trileptal iam trying to get respite but its going to take 1yr theres a waiting list.He is really aggressive its hard to take care of him .Well Jamie is a really happy person and you are a great mother.
@jondata90 ONE year? Are they crazy? Videotape your son and show it the people who are telling you to wait one year for respite. I'm so sorry. Trileptal, that's interesting. I heard that was a good anti-convulsant for some people. Does it help reduce the seizures? Such a delicate balance mixed epilepsy..like trying to prevent, control and contain forest fires....
My son has atonic seizures. I believe it is caused by vitamin deficiencies and allergies.My son has an adverse reaction to any form of casein,like yogurt or milk, and even coconut milk. I give him a daily regimen of zinc,Vitamin B-6,B-12, Vitamin E,Barley Grass,magnesium,Cod liver oil pills(source of Vitamin D),flaxseed oil pills, and Valerian Root (calms his tense muscles) In the past,
@Darkeiko Interesting. My son has been tested for allergies. The only result was allergy to dust mites. He is not allergic to gluten or casein, though I find giving him 50% gluten free foods helps his digestion, which in turn, keep him happy and comfortable, which raise seizure and self injurious threshold. Ironically, the nicotine patch has been most therapeutic in helping reduce self injurious episodes. He has a paradoxical effect on valerian. Barley grass is excellent. Good for you!
I agree with xforeverlongingx.... he is a very attractive young man. luv the "don't film me" look from bro at the end!
almostangelic00 7 months ago
Stay strong!!
itschar1ietime 9 months ago
Poor kid, damn... and he looks like a model! I hope he's doing better :(
XforeverlongingX 10 months ago
The Combating Autism Act of 2006 (P.L. 109-416) and Autism Phenome Project are interesting developments in autism research
kgaccount 11 months ago
Does Jamey need to wear diaper's becuse of his disease
dinkleman25p 11 months ago
@dinkleman25p He is extremely tactile defensive. Though we try to get him to go on toilet, sitting on toliet triggers self abusive behaviors.
kgaccount 11 months ago
Ok i read your description again. Seems your concern is with treatment not hte detection? An EEG will tell you rather well what type of seizure it is and where it is localized. The problem is, that information isnt really enough to find the best medication (although it can help). The problem is with the medications and knowing ahead of time what will be most effective. This isnt so much an issue with detecting the type of seizure however and has more to do with personal biochemistry.
DebeoMorium 1 year ago
I'm a bit confused with what exactly your concerns with current detection methods are. An EEG is a pretty definitive tool for pinpointing the exact type (classification) of a seizure and is remarkably hard to misread (A layperson can read an EEG with about 15 minutes of training for differentiating the types of seizures). Is your main complaint the lack of treatment, not detection, or is it with the actual electrodes which are often pulled off by autistics as you remarked?
DebeoMorium 1 year ago
My son started hitting and biting himself I think around 3 1/2 years old, yeast treatments have finally made the head punching and slapping go away completely, but he still bites himself. He is 6 now. When did you notice his first seizure? My son has them usually during sleep, if he is awake the seizures make him angry for a few hours or longer.
CJEB4 1 year ago
I think i have Atonic Seizures you can be doing anything then bam you just fall on the ground , its really annoying ...
KaiserVadin 1 year ago
@KaiserVadin Atonic are very tricky seizures. Lamictal, Klonipin, depakote and sometimes Keppra, are used for atonic seizures. Often, in some kind of combination or with adjunct therapies. Have U seen a doctor?
kgaccount 1 year ago
@kgaccount i am given XANAX for mine
KaiserVadin 1 year ago
aww poor jamie, he's so sweet, i've seen some videos of him. i have aspergers so i know what its like to have autism. jamies a trooper! tell him i said hello! :)
kaylinsvlog 1 year ago
i also have night time seizures, my heart goes out to you
petejpmc 1 year ago
Oh Kim, its so wonderful how you calmly let him know, "I've got you" and then reassure him with your hands-on and your voice. Folks that have never had a seizure may not realize how VITAL that is. Someone reacting frantically or screaming might actually make the seizure worse and certainly scare or embarrass the person seizing. His eyes are so filled with love when he looks at you.
rubymimosa 1 year ago
Yes this may be related to the medication- new types of epilepsy commonly occur with them, absence seizures and more. That only shows are insufficiently tailored these drugs are. There is also something called kindling. A seizure may increase the likelihood that more seizures will occur. Repeated stimulation "lowers the threshold" for more seizures to occur. In the kindling model, seizures begin to occur spontaneously after repeated subconvulsive stimuli.
Skymaker69 1 year ago
@Skymaker69 Interesting!! Doctor just added low dose of depakote for now, until we get him into a sleep study. Still waiting to hear from the sleep study people...referral was made by neurologist. Depakote, however, makes me nervous, as it caused hyperammonia in Jamey last time he was on it...but it's good for atonic seizures...maybe lactalose will counter hyperammonia?
kgaccount 1 year ago
why has he had years of head punching?
monjanse 1 year ago
@monjanse. He started punching head around 2 years old. Since then, he's had over 23 behavioral assessments, countless interventions, been on clonidine, prozac, naltrexone, risperdol, etc...etc...What we do know is continual PRO-active interventions, doing ALL we can to keep him comfortable seem to at least keep the punching minimal, unless he gets sick. We're trying HTP and other things natural again, so we'll see how that goes. Very complex, multiple antecedents that fluctuate daily.
kgaccount 1 year ago
He looks so scared when you're walking him to the kitchen - you can tell he just wants his Mom. The look on his face broke my heart. But luckily he recoverd quite quickly and was able to enjoy dinner with your family. I don't want to pry, but what type of Epilepsy does he have?
MiraculousMoments 1 year ago
@MiraculousMoments He used to have just absence seizures, then some myoclonic types, but very well controlled. I think years of head punching has worsened seizure disorder. Miraculously, medical exams never show serious damage. That's a miracle. Even docs can't explain it. Though, i'm sure there's slight concussions or soft tissue issues. We aggressively mitigate injuries, so hopefully, that has helped reduce damage. Now, appears to have mixed seizure types. Come and go, just like his SIB!
kgaccount 1 year ago
HI KIM my 5yr old does the same thing after waking up.He is on keppra and trileptal iam trying to get respite but its going to take 1yr theres a waiting list.He is really aggressive its hard to take care of him .Well Jamie is a really happy person and you are a great mother.
KAREN&JOSHUA
jondata90 1 year ago
@jondata90 ONE year? Are they crazy? Videotape your son and show it the people who are telling you to wait one year for respite. I'm so sorry. Trileptal, that's interesting. I heard that was a good anti-convulsant for some people. Does it help reduce the seizures? Such a delicate balance mixed epilepsy..like trying to prevent, control and contain forest fires....
kgaccount 1 year ago
Comment removed
jondata90 1 year ago
My son has atonic seizures. I believe it is caused by vitamin deficiencies and allergies.My son has an adverse reaction to any form of casein,like yogurt or milk, and even coconut milk. I give him a daily regimen of zinc,Vitamin B-6,B-12, Vitamin E,Barley Grass,magnesium,Cod liver oil pills(source of Vitamin D),flaxseed oil pills, and Valerian Root (calms his tense muscles) In the past,
Darkeiko 1 year ago
@Darkeiko Interesting. My son has been tested for allergies. The only result was allergy to dust mites. He is not allergic to gluten or casein, though I find giving him 50% gluten free foods helps his digestion, which in turn, keep him happy and comfortable, which raise seizure and self injurious threshold. Ironically, the nicotine patch has been most therapeutic in helping reduce self injurious episodes. He has a paradoxical effect on valerian. Barley grass is excellent. Good for you!
kgaccount 6 months ago