My son was recently diagnosed with myoclonic seizures and absent seizures

Amanda - posted on 06/25/2011 ( 8 moms have responded )

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Would love to hear from anyone who has dealt with these kinds of seizures. My son is two yrs old and right now he's on keppra and we just got up to his full dosage but is still continuing to have seizures everyday. Any help would would be a amazing. Thanks Amanda

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Lisa - posted on 06/29/2011

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Hi Amanda,

My son Dylan is 11 and has Juvenile Myoclonic Absence epilepsy(Tassinari).He was diagnosed in 2008.His Intractable epilepsy has never been controlled. He has been on every medication under the sun. In addition to the Ketogentic diet and even prednisone. He still continues to have 50-100 myoclonics daily. He also started having drops (very large myoclonics)that make your limbs go limp. Sometimes he will fall to the ground, if we are near we will grab him before he hits the greound, As his doctor increased his Lamictal to try to gain some control of his seizure we saw Dylan cry out of control. Making weird faces and turning his body all over. After the 2 hour crying and him falling asleep he woke up fine. Doesn't recall much of anything. This is the 2nd time this has happend. The first time was last week when we increased his Lamictal 50 mg. The 2nd time was today after we increased Lamictal again another 50 mg. After goolong this we found out that thee is another seizure called Dacrystic. It seems that is fits exactly what my son was experiencing. We have been to Duke for a 2nd opinion and now NYU next month for a 3rd opinion. Hang in there i know it is so frustrating, but we have to just take things one day at a time.

Kory - posted on 06/29/2011

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Hi Amanda. My son has had hundreds and hundreds of myoclonic seizures in the three years since he was diagnosed at the age of three. He also has absent, grand mal and lately has started having atonic seizures. He has been on valproic acid and topamax for quite a while and his neurologist has just added keppra to try and control the atonic seizures (we are still in the first week of this med). His seizures have never been totally under control, they get better for a while after a dose increase and pretty soon he starts having them again. They are under way better control than they used to be, but would love to see them totally under control. We are considering putting him on the ketogenic diet. He was started on valproic acid first which helped with the grand mal and absent seizures but did nothing for the myoclonics. It was the topamax that finally stopped him from having 25+ myoclonics seizures a day. He still has some myoclonic seizures but not very many. You could ask his doctor about topamax. I don't know if it will work for your son, but it did help my son with his myoclonic seizures. Hope this helps you. Good luck!

Jamie - posted on 06/29/2011

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My daughter at the age of 5 was diagnosed with Grand Mal and Absent seizures....she has had seizures since the age of 10 months. She is 13 now and on Keppra which control the Grand Mal...Lamictal helps control her absent seizures. Without the Lamictal she would still being having episodes of the absent seizure. Before February she was seizure free for 6 wonderful years...then in Feb she did have one...doctors are saying hormones played a part in it and we had to up her dosage....I would really ask your doctor about Lamictal...without the meds she is now on I could almost bet on her having one every other month if not monthly...good luck!

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Cindy - posted on 01/14/2013

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How is your son doing? My daughter was diagnosed with Myoclonic Absence Epilepsy a little over a year ago. There does not seem to be much info on it. Do you know where I can get some? She is on the Keto diet.and it has really helped but she does quirky things and is developmentally behind

Jennifer - posted on 11/15/2012

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Hi Amanda my 6 yr old son also has myoclonic jerks and myoclonic absence seizures. Like your son my son james is also on Kepra 7 mls per day and 90mg lamotrogine. This combo currently isnt working so we are weaning him of lamotrogine and hoping the Keppra alone will help control the damn seizures. Feel free to message me

Jen x

Cassie - posted on 09/14/2012

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hi Amanda, My son was diagnosed with this also and tried a number of drugs that did nothing. We took him to Cooks childrens hospital where he was re diagnosed with myoclonic absence epilepsy( I know sounds the same but its not) they took him off all medication and started him on 1 of the 2 drugs known to help this Celontin it did ot work so they added depokote Which seemed to help ut not alot so he started him on the 2nd drug known to help Onfi which was at the time only allowed in the usa for 2 months. This combo helped A LOT he went from over 100 seizures a day to 10 or so not perfect but progress! he has not been moved to the full dose yet and so I am very hopefull. I hope this is helpful

Lisa - posted on 06/30/2011

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That is wonderful! I am so glad that she has been seizure free for almost a year. Keppra was probably the worse medicine Dylan was on. He had such bad side effects from it. Klonopin he has been on for a while and doesn't help him much. We are still searching for our right cocktail of meds.

Windy - posted on 06/29/2011

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Our daughter was on keppra at about months old, didn't work put her on tryleptal made worse. Finally klonopin. She stayed on it for awhile all seizures went away. Weened her off and she has been seizure free for almost year now. She is two now.

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