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KarenB KarenB is offline

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  • About KarenB
    Seizure Background
    My son (now 11) began having grand mal (tonic clonic) seizures just a couple days after his first birthday -- after falling forward and bumping his head on the edge of the mirror.

    EEGs that have captured his seizures show they are partial complex, beginning in right temporal lobe, and then sometimes generalizing.

    His tonic-clonic seizures have stopped since he started Zonegran in the Fall 2012.

    He also has a sort of tonic seizure in which he'll scream out two or three times, and then stiffen and stare with a look of horror for about 10 seconds, and sometimes part of his body will twitch, or his fingers will rub each other. Often, after these seizures he'll become a bit manic -- grinning and dancing or running around like a drunk person. Even though these are brief seizures, they tend to knock him out -- he'll often sleep for one or two hours after this sort of seizure. He has this sort of seizure frequently -- sometimes as many as 2 or 3 (up to 9) a day, but after a lot of tweaking meds, diet and supplements, these have pretty much faded away. He hasn't had a tonic seizure since January 2012.

    He also (very rarely) has gelastic seizures (giggling spells).

    Jonathan was born prematurely with Down Syndrome. He had loss of oxygen during birth process, and was in ICU for 3 weeks with various complications.

    After getting out of ICU, he had a healthy first year, and was hitting all his milestones in spite of having Down Syndrome.

    His seizures began 2 days after his first birthday. His first med was Keppra, which didn't work. He still did well developmentally.

    Just before his 2nd birthday, he was put on Topomax. This DID work quite well. He went 2 years without any seizures at all. This was a wonderful time for him developmentally. He learned to walk, and learn to speak in sentences, and was bilingual in English and Chinese. He was potty trained, and went to regular preschool.

    Just at the point that the doctor was saying, "Well, lets do another EEG and think about weaning" - he had another one on his 4th birthday. But then he went another year and a half with no seizures. And continued to progress developmentally. Delayed, of course, because of Down Syndrome, but making progress.

    When he was 5 1/2 he began having seizures again. His Topomax was increased. The seizures were not frequent -- only every 2 or 3 months. But this year, he began to lose his language. We had been living in Asia (where he was born) but came to the U.S. when he was 6 1/2. At this point, following his DTaP vaccine, his seizures began to increase. Topomax was increased with no effect, except that he lost even more language.

    Eventually, Jon was having several seizures a week. Neurologist weaned off Topomax and put on Trileptal. No effect on seizures, but he developed what seemed very like Autism at this point. Lots of stimming, if he was in Walmart, would get overstimulated, and throw hands over his head and make loud repetitive grunts, he became very hyperactive, and quite violent -- to the point that the principle was trying to kick him out of school -- and this the boy who had been so sweet and laid back and well behaved in kindergarten just one year earlier.

    Weaned off Trileptal and put on Lamictal. He had an allergic reaction -- skin rash, plus vomiting and diarrhea. Then Depakote, which didn't seem to help the seizures, but put him in a zombie state. But at least he didn't have what we called the "Trileptal Terrors".

    Just after Jon turned 7, he initiated the Ketogenic diet -- classic, 4:1 ratio. It took about 6 weeks to kick in, but then he went 11 months without any seizures.

    After being seizure free for about 4 months, his doctors weaned him off the Depakote, because his liver enzymes were getting quite high, and he also had a blood disorder they thought was caused by the Depakote. His teacher said it was like "turning on a light bulb" as he came off the Depakote. He finally lost his hand tremors and was able to make good strides in fine motor skills. He was able to learn to feed himself (hands shook too much before).

    By his 8th birthday, Jon was seizure free and med free. Then, 2 months later, after having a normal EEG, his nutritionist made some changes to his diet, because he'd had an intestinal virus and lost too much weight. She increased his carbohydrates, and he began having some breakthrough seizures -- one about every 3 or 4 weeks. I guess once seizures start back, it's hard to control. We worked hard to bring them under control, reverting back to the 4:1 ratio.

    Then, in the Fall of 2012 he began having several tonic/clonic and tonic seizures every night and began having daytime photosensitive seizures. During this time he also was having frequent diarrhea, which made us suspect there was a link between his GI issues and his seizures

    From August 2012, we have been working hard with his team (neurolgist, nutritionist, GI doc, and endocrinologist) to get the seizures (and diarrhea) stopped. In addition to Zonegran, Jon was also put on Diazepam and then Keppra, but has now been weaned off of those (they didn't seem to help). The Zonegran has definitely been working, as has been the diet.

    In January 2013, he started going longer periods (a week or so) without having seizures, and most of the seizures seemed to be related to the Keppra wean.

    As of July 2015, Jonathan has been seizure free for 2 1/2 years. He is almost med free -- just 25 mg of Zonegran a day. He continues on the Ketogenic Diet at a much lower ratio (2.5:1).
    Treatments
    Ketogenic Diet - classic, Johns Hopkins protocol, 2.5:1 ratio. Zonegran 25 mg/day. Also several supplements: Nutrivene D, fish oil, magnesium. We recently added probiotics back in.
    Location
    Rochester, NY

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  • Last Activity: 01-14-2017 03:16 PM
  • Join Date: 01-01-2011
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