Medicines for Atypical Absence Seizures???

Deana - posted on 06/07/2010 ( 28 moms have responded )

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Hi!

Anyone else has a child with Atypical Absence Seizures? I'd love to find out what meds they are on or which ones worked/didn't work......



Thanks in Advance!

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Jammie - posted on 07/17/2012

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Hi. I am new to this forum. I have had success treating my daughters absence seizures naturally. She has been seizure free for almost 2 years. She is now 5 1/2. Started her sezures not long after turning 3. In short she had six to seven seizures a day that usually presented as a slight physical jerking of the chin/head followed by a short trance like state and then depending on the duration would either pop right out of it or be fatigued to the point of having to sleep. I have not read the post here to deeply but if any of you are interested in what we tried I would be happy to share. I remember how desperate I felt hoping for something and felt a responsibility to connect back with others that my be experiencing something similar to what we went throught.

Keila - posted on 03/15/2013

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Hi Jammie,



I have a daughter who will be 8 in July and has just being diagnosed with childhood epilepsy or absence seizures. They prescribed Sodium Valproate in Syrup which is full of additives which i am completly against. We try to live a health life style, just natural medicines. She never took an antibiotic or other medicines and we are 90% vegan. I got very interested to know about the treatment you gave to your daughters as I am searching everywhere about an alternative to traditional medicines. Could you share with me?

Many thanks, keila

Jammie - posted on 07/17/2012

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Hi. I am new to this forum. I have had success treating my daughters absence seizures naturally. She has been seizure free for almost 2 years. She is now 5 1/2. Started her sezures not long after turning 3. In short she had six to seven seizures a day that usually presented as a slight physical jerking of the chin/head followed by a short trance like state and then depending on the duration would either pop right out of it or be fatigued to the point of having to sleep. I have not read the post here to deeply but if any of you are interested in what we tried I would be happy to share. I remember how desperate I felt hoping for something and felt a responsibility to connect back with others that my be experiencing something similar to what we went throught.

Sonyak - posted on 04/18/2012

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Hi again!
Well Monday was day 13 and ended our streak of no seizures....Alexander had a seizure in the morning before we even got to the neuro. They are hopeful that the dose may still be the correct one and opted to change from 20mg in the evening to 15mg in the evening and 5mg in the am. And we took his depakote from 1000mg in the eve and 500 in the am to 1250last nite all together. We begin to wean him off the remaining lamictal next week. Needless to say, he had another mild 5 minute seizure this morning. These are the types where his eyes can't focus on us and he is 'forced' to look away either down or to the side. The doc is hopeful that these seizures are caused by the lamictal and we need to see in about 3 weeks when he is totally off that if these seizures go away. So though we saw 2 seizures now, I am still hopeful that this clobazam will control what's left once he is off the other meds... Fingers crossed. I wish you all luck with your children. This is such a terrible 'illness' to have with meds being a hit or miss situation and life totally in turmoil. Forums like this really do give support and info to all. Thanks to all of you again.

Rosalin - posted on 07/28/2012

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hi am new to this post my name is rosalin my daughter has absence seizure for about a year now they have on zarontin i really dont like the side effects can you help thanks

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Katherine - posted on 10/07/2014

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My daughter is 10 years old. She has Atypical Absence Seizures. She takes 125mg of Depakote 5 pills a day. (2 in the morning, 1 in the afternoon and 2 at night). Her last seizure was on December 28, 2013. She was staring off, not responding to simple questions, clenching her hands and rubbing her top and bottom feet repeatedly.  She needed Diastat to come out of the seizure. It lasted more than 10 minutes. She threw up about 2 minutes into the seizure.
Her last seizure before this one was on January 3, 2013. Prior to that she had not had a seizure in almost 2 years.

Kate - posted on 10/17/2013

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My daughter was diagnosed four years ago. Shes 8 now and has been seizure free for 6 months!!! i'm coming in on these conversations to offer advice, hope and comfort to those still in the thick of it! I chose not to medicate - i know not everyone has that option and every case if different but if anyone would like any support or advice on how i did things please contact me at kate@sjstaringmoments.com

Marcie - posted on 03/15/2013

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If you are looking for a more natural route you could always try the keto diet http://www.charliefoundation.org. It does have to be started in the hospital though as it can be very dangerous to do alone. My son tried it and it didn't work for him but I think it has a bunch to do with his perticular disorder. There are people that are only on it for a year or two and are able to come off it with remarkable results...plus some are even medicine free while on the diet and after it. I would also check out www.ketocook.com it is a Charlie foundation approved website for recipes and it helped me a lot! Ask your neurologist if your interested and see if they can set you up with a ketoginic dietician. My opinion, anything is worth a shot and the keto diet is probably the most effective natural route :). Hope this helps!

Keila - posted on 03/15/2013

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Hi Jammie,

I have a daughter who will be 8 in July and has just being diagnosed with childhood epilepsy or absence seizures. They prescribed Sodium Valproate in Syrup which is full of additives which i am completly against. We try to live a health life style, just natural medicines. She never took an antibiotic or other medicines and we are 90% vegan. I got very interested to know about the treatment you gave to your daughters as I am searching everywhere about an alternative to traditional medicines. Could you share with me?
Many thanks, keila

Tammie - posted on 03/14/2013

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Have you learned anything or have any medications helped? My son was just diagnosed with Atypical absence too. He has no other issues.

Alisa - posted on 01/27/2013

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My brother has a very severe form for Atypical Absense Seizures and requires high doses of Tegretol to control them.

He has been on Tegretol from infancy up to age 31 now, and it works. About 4 years ago (after 25 years of relying in Tegretol to control the seizures he began having severe problems. The medication became less and less effective, and the seizures were far worse than they were before his seizures were brought under control, and became more dangerous. At the same time, his kidney's began shutting down due to the high doses of Tegretol he had taken for so many years. It took us nearly 1 year to find a neurologist who was able to treat him and resolve the issue. The neurologist added Lamictal to my brothers medication, which complemented the Tegretol and made it more effective in smaller doses. This has so far been 100% effective in controlling about 90% of my brothers seizure activity, and completely preventing the worst types of seizures from occurring at all in the past three years.

Melinda - posted on 09/15/2012

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Hi! I am new to the post. I just found out that my child has abence seizures. I have my first appointment with a neurologist on Monday. Can anyone tell me what to expect and what I should ask? Recommendations on Medications? Thank you.

Kandis - posted on 04/17/2012

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My dd was diagnosed with Absence Seizures last june. We tried Zarontin which caused horrible I mean horrible nightmares! We tried Depakote and at almost toxic levels it was of no help and made her gain alot of weight. Then we tried Lamictal it sort of helped but it really affected her personality, she became very depressed then at christmas time they added Amantadine to the Lamictal it took a month but what a difference! For about 2 months the seizures had quit until spring break when she a had a grand mal seizure which we have contributed to not enough sleep and she hadnt taken her meds. We have to keep her on a very strict sleep pattern so they started her on Melatonin to help her get into a deeper phase of sleep at night and to actually sleep. Her grades have slipped and she seems to be getting forgetful. We go back in a few week to see her nuero to see what we can do.

Deana - posted on 04/11/2012

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Thank you Sonyak...you and your family too, although I wouldn't wish it upon anyone, it's always good to have support that truly understands what it takes to deal with all of this!

Sonyak - posted on 04/11/2012

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got it! well like i said...will be back after monday's appt and let you know. thanks again for posting...really is a great place to exchange info...wish you, your family and Sarah all the best!

Deana - posted on 04/11/2012

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sorry, atypical absence seizures...hers also last a long time--longest time 21 min. shortest 7min... same here... "normal otherwise" in every other area, started out of the blue when she was 5years old... blessings!

Sonyak - posted on 04/11/2012

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can i just ask, does she have absence or atypical absence seizures? i was a bit confused by your second post where you just mentioned absence....alexander never had absence seizures (tho i wish it would have been something that simple!) we were even at the point of considering brain surgery, though I am not sure if this would have happened as his PET scan showed glucose uptake in the occipital/parietal areas more so than the temporal areas and the surgeries for temporal regions are most successful. our next step if the clobazam doesn't last (and I pray it does!) is a modified atkins diet....fingers crossed! I will ask abou the zarontin tho on monday as we have another neuro appt then. BTW-Alexander's EEGs while sleeping showed 40-60% seizure activity tho it never affected his sleep or his daily activity. But we always wondered about
the heavy night time 'drooling' in his sleep and he suffered from bed wetting for many years which is now being attributed to these seizures.... He sleeps like a rock tho....never affected him there at all! thanks so much to you and all who contribute to these posts! you have no idea how many hours i have poured over these computer websites since alexander never had any 'typical' seizure controlled by any of the typical meds! and having a child with atypical absence that is not developmentally challenged or has any of the other typical symptoms is also not something i can really get much info on from the computer! thanks again!

Deana - posted on 04/11/2012

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Sonya, your story is very similar to ours...if anything comes up it is a tried and true mix the Depakote AND Zarontin for ATYPICAL SEIZURES-we've seen several pediatric neurologists and they've all said the same thing...these 2 medicines are the most effective and they know the longterm effects of them....-they'll figure out the dose based on weight etc...Sarah's EEG's were similar and this week on Monday she had another good EEG--she's been on Depakote and Zarontin the first round (2 years) and this round and it always stops/controls the seizures. The Dr. has weaned her off of the Zarontin and we are trying just Depakote at this time, I guess the Zarontin can affect sleep at night --since we've decreased the Zarontin she went from waking 3-4 times a night to just once! We'll take it, she's doing great at school and the seizures are staying away at this point! I pray she's growing out of them..... thank you all for your support and input...if anyone ever wants to chat..I'd be happy to chat...we all need to support each other!!!!!!!!!!!!!

Sonyak - posted on 04/11/2012

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Hi there,
My name is sonya and i am new to this website. i am writing because my son out of the blue developed daily seizures about 1 1/2 years ago when he was 11. he would act like a space cadet at times and we could not figure it out till we asked our pediatrician who said he should be evaluated for seizures. he is a normal, above average in school boy who had no head trauma or issues during pregnancy. it has been a long 1 1/2 years...initially we were told complex partial seizures, though the first eeg showed possible atypical absence. we thought that could not be the case since he is a normal child not developmentally delayed in any way. his seizures were never 'normal'....they all lasted at least 5 minutes and normally were 10-20 minutes in length....oe time we had one that lasted just over an hour. We were in NY Columbia Presbyterian-Morgan Stanley Children's Hospital with intermittent trips to Children's Hospital Boston. In April and May we cried daily waiting for results of genetic testing which we thought would bring bad news that he was dying. Everything came back ok there. He was on Depakote at first, Keppra, Keppra ER, Keppra generic, Trileptal (generic), Topimirate, Lamictal,
and Depakote again. NOTHING WORKED! In the fall of 2011 he missed 6 weeks of school and was hospitalized for 2 of those weeks. They told me he had PSYCHOSOMATIC seizures since most of his '20 minute+" seizures showed no EEG correlation. So we went to a psychologist who threw zoloft into the mix. His acne got so bad from the trileptal he now has deep acne scars (at age 11!) And the trileptal was maxed out so that he had additional double vison, blurry vision, unsteady gait, etc. We began going up to Boston for second opinions because nothing worked and things got worse. In school he went from good student to fighting to get him an IEP (individual education plan).
LONG STORY SHORT - Alexander had an irregular EEG from the get go and no one could really 'see' the seizures activity because of the irregularity (though he is a normal kid!!!)
FINALLY someone thought his slight head bobs and confused states were possibly ATYPICAL ABSENcE SEIZURES. In November 2011 CLOBAZAM was approved for use in the US after a trial in October showed significant improvement in seizure activity for kids with Lennox Gastaut Syndrome (which includes atypical absence seizure activity). Alexander started Clobazam 3 weeks ago. HE HAS BEEN SEIZURE FREE SINCE APRIL 2!!! We are ecstatic!
He had up to 5 seizures a day lasting on average 10 minutes and spent hours in the school nurse's office sleeping after the episodes. I know clobazam has it's downside, but for us this is the first med that works!!! After a year and 1/2 of daily multiple seizures, it was worth the try. Thank God it is available now in the US! Good luck!

Alicia - posted on 11/16/2011

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We have a 10 year old with Atypical Absence Seizures and no other kinds of seizures. We have not gotten seizure control. Lamictal works the best for us. Tried Depakote, Felbatol, and one other all in conjuction with lamictal. He has about 1 an hour still-2 years after being diagnosed.

Amber - posted on 06/26/2010

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My 3 year old son has absence seizures and is on Trileptal. They have had to up his dose even tho his weight has not changed bc he was getting break threw seizures at school, and the level was to low in his blood. But other than that it has worked great he has been on it for about 6 months now

Teryl - posted on 06/10/2010

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I myself have this type of seizure. I am 28 years old and have had seizures since I was 9. I also have an eleven month old son. I am not writing this to scare you, but just to let you know things will be ok even if meds do not cure your child completely. I am currently taking topamax and lamictal and for the most part I do ok, but have never been fully cured. I can't drive, but I do have a full time job that my mom takes me to 5 days a week, and takes care of my son while I am there. I have a wonderful husband that helps me out if I need to be anywhere. Like I mentioned before this was not to scare you, but if your son does not beat his seizure don't baby him his whole life. Treat him as normal as posible, and he will be a better and stronger person than you would ever imagine. Good luck and God Bless!

Renee - posted on 06/09/2010

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I took Tegretol for mine that worked great for a long time but i had to have brain surgery for mine in 87.

Theresa - posted on 06/08/2010

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My middle son is almost 5. He is on Lamictal for his absence seizures and has had some break through seizures so the dosing is being altered to help. My son is also autistic, has ADHD, and has a mild form of Cerebral Palsy.

Kathi - posted on 06/07/2010

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My son, Jonah, has been on Trileptal right from the start. We've had to increase his dose as he grows, but I've been very happy with it. I also have an emergency kit of rectal Valium just in case. Different doctors give different directions with it. Jonah's is for a seizure that lasts more than 2 minutes. His first EEG after the initial grand mal seizure, he was awake and talking and showing seizure activity on the EEG. The tech told me she'd never seen spikes that high on someone who was alert, talking, and oriented.

Meg - posted on 06/07/2010

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my daughter was put on a new RX... VIMPAT ... it is working very well ... she is making progress in all areas and is alot less forgetful. This drug is rather new @ 1 to 2 years on the general market.. I am told it works great for many...

hope this helps... : )

Deana - posted on 06/07/2010

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Thank you. My daughter Sarah is 8 and her absence seizures have come back. The first time around (2.5yrs ago) Depakote and Zarontin worked but had some terrible side effects that affected her schoolwork and home life. This time around I was hoping to get away from them but tried just the Zarontin (dropped the Depakote) and Viola she had a 3-5 min. Absence and a 3-5 min Grand Mal (her first one of those ever!) Scary stuff...so now we are trying to "tweek" the dosages but truthfully I just want her off of them completely and try something new! Dr. is telling me the tried and true meds for atypical absence seizures are Depakote and Zarontin... would love everyone's input!

Kathi - posted on 06/07/2010

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My son has absence seizures, but wasn't put on medicine until he had his first grand mal seizure. They kept blaming the absence seizures on other things. He has autism also. He is on Trileptal, and it has worked very well. It has controlled the partial complex and absence seizures very well.

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