Hello all,
Can anybody with BRE in their lives tell me what time intervals they tend to have between seizures? My daughter just had another seizure tonight, making it five in a row. She has never had five in a row before; usually three, when it has been a longer period without seizures. Otherwise, she gets them on the average of every four weeks. She recently had an eight week gap, which is on the longer side for her; but, as we've been working on different therapies, I'm made nervous by this recent spate of seizures.
My daughter Z was diagnosed with BRE three years ago. This is a focal seizure disorder in which seizures are triggered during sleep. We have other sleep disorders in the family: apnea, even isolated paralysis incidents associated with narcolepsy. Sleep problems are our specialty. Benign Rolandic Epilepsy is usually not treated with medication.
When our health plan changed and we got a new neurologist a year and a half ago, she questioned whether the "B" for benign should really be there, and told us to put Z on Keppra. I was reluctant, but we agreed to try a small dose. Over the next year and a half, the doses kept increasing every time we went in. The seizures didn't stop. I did some calculations recently and found that the seizure frequency and duration for both before and after Keppra were the same. Keppra was making Z miserable; she no longer wanted to talk to her friends, took pleasure in almost nothing, and was incredibly slow to speak (had an IQ of over 150 when all this started. She's always been methodical, but she now literally couldn't finish any of the sections of the standardized tests she had finished in previous years, getting 60% of her prior scores. Brain damage or Keppra? We decided to take her off the drug. We tapered doses down over four weeks, keeping her on a new, ketogenic diet the whole time. Changes in Keppra dosages had often precipitated seizures before, so we wanted to do something protective. We used a lower ratio so that
She went eight weeks without a seizure, the longest gap she'd had in a while. I charted and calculated the ratios of all her foods, keeping her at a 3 to 1 ratio (in calories; 2.5 to 1 in grams) as that was the ratio recommended by Dr. Perlmutter for general brain health. We weren't going to be able to see the new neurologist for two months, so I didn't want to do something extreme like a 4 to 1, which would require a dietician's help and doctor's surveillance. We had used urine test strips to make sure she was in ketosis; we started neurofeedback and removed casein from her diet as an extra precaution. Z got the light back in her eye, her old, affectionate ways came rushing back, she was a champ about the new dietary restrictions, and I felt like a rock star. She had been completely off Keppra for a week, her neurofeedback was reporting a reduction in the range of
Then she fell asleep in the neurofeedback chair and seized for two minutes.
She had a tiny little solo in her school choir concert that night; she got her coordination back in time to do it. She then had these smaller, 20 second partials every night since--four nights. We have managed to move up our neurologist appointment, but it's still two weeks away. I have been a mess, wondering whether I should take her to clinical levels of the ketogenic diet (3 to 1 or 4 to 1 ratios of grams fat to grams protein and carbohydrate combined--our ratio is based on calories, so slightly lower/safer)
I'm beginning to wonder if my use of hemp oil in the early days of her new diet was part of what was helping. We ran out recently. Her neurofeedback doctor gave me a prescription yesterday for CBD hemp--thank God we live in Washington--and I plan to fill it tomorrow if I can (I don't really understand how it's done, and can't quite believe it til I get it).
I know that the short seizures are less damaging. Still: I can never sleep well while I'm listening for bumps on the wall, and I am longing for some hive mind reassurance about the nature of BRE.
Thank you!
Can anybody with BRE in their lives tell me what time intervals they tend to have between seizures? My daughter just had another seizure tonight, making it five in a row. She has never had five in a row before; usually three, when it has been a longer period without seizures. Otherwise, she gets them on the average of every four weeks. She recently had an eight week gap, which is on the longer side for her; but, as we've been working on different therapies, I'm made nervous by this recent spate of seizures.
My daughter Z was diagnosed with BRE three years ago. This is a focal seizure disorder in which seizures are triggered during sleep. We have other sleep disorders in the family: apnea, even isolated paralysis incidents associated with narcolepsy. Sleep problems are our specialty. Benign Rolandic Epilepsy is usually not treated with medication.
When our health plan changed and we got a new neurologist a year and a half ago, she questioned whether the "B" for benign should really be there, and told us to put Z on Keppra. I was reluctant, but we agreed to try a small dose. Over the next year and a half, the doses kept increasing every time we went in. The seizures didn't stop. I did some calculations recently and found that the seizure frequency and duration for both before and after Keppra were the same. Keppra was making Z miserable; she no longer wanted to talk to her friends, took pleasure in almost nothing, and was incredibly slow to speak (had an IQ of over 150 when all this started. She's always been methodical, but she now literally couldn't finish any of the sections of the standardized tests she had finished in previous years, getting 60% of her prior scores. Brain damage or Keppra? We decided to take her off the drug. We tapered doses down over four weeks, keeping her on a new, ketogenic diet the whole time. Changes in Keppra dosages had often precipitated seizures before, so we wanted to do something protective. We used a lower ratio so that
She went eight weeks without a seizure, the longest gap she'd had in a while. I charted and calculated the ratios of all her foods, keeping her at a 3 to 1 ratio (in calories; 2.5 to 1 in grams) as that was the ratio recommended by Dr. Perlmutter for general brain health. We weren't going to be able to see the new neurologist for two months, so I didn't want to do something extreme like a 4 to 1, which would require a dietician's help and doctor's surveillance. We had used urine test strips to make sure she was in ketosis; we started neurofeedback and removed casein from her diet as an extra precaution. Z got the light back in her eye, her old, affectionate ways came rushing back, she was a champ about the new dietary restrictions, and I felt like a rock star. She had been completely off Keppra for a week, her neurofeedback was reporting a reduction in the range of
Then she fell asleep in the neurofeedback chair and seized for two minutes.
She had a tiny little solo in her school choir concert that night; she got her coordination back in time to do it. She then had these smaller, 20 second partials every night since--four nights. We have managed to move up our neurologist appointment, but it's still two weeks away. I have been a mess, wondering whether I should take her to clinical levels of the ketogenic diet (3 to 1 or 4 to 1 ratios of grams fat to grams protein and carbohydrate combined--our ratio is based on calories, so slightly lower/safer)
I'm beginning to wonder if my use of hemp oil in the early days of her new diet was part of what was helping. We ran out recently. Her neurofeedback doctor gave me a prescription yesterday for CBD hemp--thank God we live in Washington--and I plan to fill it tomorrow if I can (I don't really understand how it's done, and can't quite believe it til I get it).
I know that the short seizures are less damaging. Still: I can never sleep well while I'm listening for bumps on the wall, and I am longing for some hive mind reassurance about the nature of BRE.
Thank you!