Dtr diagnosed as a toddler with absence seizures and since then has acquired other kinds of seizures - simple and complex partial seizures with generalization. She takes Topamax as other medicines cause too much aggression. Lately, she has begun swearing during seizures and throwing things and remembers nothing. Adolescence is hard enough but this adds an extra layer she has trouble coping with. Hope that we can read the comments on this board together and she can become stronger and better able to handle her more complicated life's path.
New member with 13 year old dtr with seizures
- Thread starter bobette
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Hi bobette! My daughter is 11, 12 next month and was diagnosed with a seizure disorder last summer. The first med we tried didnt work and the Neuro didnt listen to me and help much so we switched Drs and got a diagnosis and a new med. She has been doing well since. I hope that you get some answers. Maybe your Dr needs to run more tests to see if her seizures have changed, and look at changing her meds. There are several alternatives to Topamax.
KarenB
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I wonder -- has your neurologist tested your daughter for GLUT-1 deficiency?
Two recent studies have found that 12 to 13% of children that begin having absence seizures before age 4 have GLUT-1 Deficiency. What happens is that their brain becomes starved of energy -- this causes seizures (usually starting as absence seizures, which often progress to other types), and often developmental issues -- especially with gross motor and fine motor abilities. This type of epilepsy does not respond well to any meds.
The treatment of choice for this type of epilepsy is the Ketogenic diet, which converts the brain's energy source from glucose to ketones. Once the brain begins getting the needed energy, the seizures subside, and often disappear altogehter.
Another type of epilepsy that tends to be progressive in children is temporal lobe epilepsy (which is what my son has). He has had tonic-clonic seizures since age 1, and more recently tonic and gelastic seizures. He was on Topomax for years, and that controlled the seizures for several years, then stopped working. We then worked our way through a number of meds that didn't work but caused a lot of aggression (the ones worse for aggression were Trileptal, Diazepam, and Keppra). Then he went on the Ketogenic Diet, and after 6 weeks became seizure free and stayed seizure free for one year. However, he then had a relapse (which coincided with signs of early puberty), and we had a really hard time getting things back under control. During this time, he began having psychotic like episodes during or immediately after a seizure -- crazy laughter, and things like jumping up and running full speed into a closed door. This started in August 2012. We finally got everything under control by tweaking the diet and adding Zonegran (his only seizure med right now). He hasn't had a seizure now for one month.
So...it may be that puberty is causing a lot of trouble for your daughter, as is often the case with seizures.
Two recent studies have found that 12 to 13% of children that begin having absence seizures before age 4 have GLUT-1 Deficiency. What happens is that their brain becomes starved of energy -- this causes seizures (usually starting as absence seizures, which often progress to other types), and often developmental issues -- especially with gross motor and fine motor abilities. This type of epilepsy does not respond well to any meds.
The treatment of choice for this type of epilepsy is the Ketogenic diet, which converts the brain's energy source from glucose to ketones. Once the brain begins getting the needed energy, the seizures subside, and often disappear altogehter.
Another type of epilepsy that tends to be progressive in children is temporal lobe epilepsy (which is what my son has). He has had tonic-clonic seizures since age 1, and more recently tonic and gelastic seizures. He was on Topomax for years, and that controlled the seizures for several years, then stopped working. We then worked our way through a number of meds that didn't work but caused a lot of aggression (the ones worse for aggression were Trileptal, Diazepam, and Keppra). Then he went on the Ketogenic Diet, and after 6 weeks became seizure free and stayed seizure free for one year. However, he then had a relapse (which coincided with signs of early puberty), and we had a really hard time getting things back under control. During this time, he began having psychotic like episodes during or immediately after a seizure -- crazy laughter, and things like jumping up and running full speed into a closed door. This started in August 2012. We finally got everything under control by tweaking the diet and adding Zonegran (his only seizure med right now). He hasn't had a seizure now for one month.
So...it may be that puberty is causing a lot of trouble for your daughter, as is often the case with seizures.
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