SoCalMarisa
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Hi all, I'm new here but not new to Epilepsy. My son had his first Grand Mal 2 years ago October at age 4 and it's been a roller coaster ride since then. He has Benign Rolandic Epilepsy with primarily Nocturnal Seizures. When he doesn't get good sleep he has a seizure. They generally hit after 1am and before 6am, which always makes for a fun night and few days following. Getting his neuro on board with the whole idea that his trigger is being tired was a challenge. Keeping a journal helped. He has had lapses or periods where he was seizure free for up to 9 months, then bam. Of course all tests show normal brain activity. Prior to him having seizures he used to get horrible night terrors. Always typically when he didn't get a nap. Those went away but then the seizures replace the night terrors. (Neuro says no direct correlation-HA!) He's probably the only 6 year old who still gets 3 hour naps. He does not get good sleep and we use Melatonin to help him rest properly. He isn't currently on any of the anti-seizure medication because his seizures are so few and far between. Plus we really don't want to use them if we can get away with altering diet to help him along. But are not completely unwilling to cross that bridge.
When I asked his doctor about diets and foods for epileptics his only comment was the Ketogenic diet really wouldn't affect his type of epilepsy. But he didn't have any suggestions. Now, I'm feeling like I'm teaching the doctor. We are with an HMO and are limited in our choices for Dr.'s and considering his ped. neuro is the head of his department we're kinda in a spot. Our next opt out is May of next year so we need to tough it out with him until then. Luckily my keeping a journal and being adamant about my sons needs has helped in opening the Dr.'s mind that he may not have all the answers. Now we are working together, instead of the mighty Doctor knows best.
Hayden starts first grade in fall and they wanted to keep him back because they were not happy with his cognitive - not understanding that it's an epilepsy thing not a maturity thing and we need to learn how to teach him rather than mask the problem. It's a private school and they really don't have much of a program for children with learning disabilities. So I've bullied them and Hayden starts first grade but he will have a tutor with pull-outs during the day.
My main problem now and that's why I'm here and oh so sorry for the long build up - is he of course is a very hyper boy with an active imagination. I just know when he gets into first, his teacher is going to say he has ADD/ADHD and that he needs to be medicated. [groans] So in speaking with the pediatrician about possibly changing his diet to reduce his hyperactivity she was onboard. Her first response was take him off dairy, which is going to be fun because dairy is his main food group. Milk, yogurt, cheese, ice cream. The boy could quite literally live off dairy. Then she recommended going organic. This is a whole new world for me. We aren't bad eaters here. We eat lots of fruits and vegetables. I do more cooking than preparing. But we are also your typical family who eats your regular commercial foods. I feel sooooo lost. Our first change was to put the boy on Almond Milk for his cereal, which was this past Saturday. I think he looks at is as an adventure because he really enjoys this. Thank the Lord!
He has calmed down a bit and his personality seems more aware. which makes us more interested in changing his diet. What I don't understand is how come his neuro didn't suggest these changes to me in the first place? I understand he is a busy Doctor but how come we didn't receive a welcome to epilepsy packet that included dietary suggestions. & NOW WHAT? Where do I begin? Money of course is tight so we can't just wipe out our pantry and start over. Feeding a family of 4 is a tough thing to do already in this economy. But we do want to make smart changes for our family.
When I asked his pedia about gluten she said he's not autistic so not removing gluten shouldn't be an issue? But I just read on the board that gluten can be an issue?
Why is Soy so bad for Epileptics?
Is goats milk ok or not?
Again sorry for the long post but given that my sons seizures can go a few months with gaps he is not your typical epileptic but he still is one and since we don't see his Dr. very often I'm always full of questions. If you're still here thanks for your help and reading all my yammering on. + I hope I'm in the right forum!
~Marisa
When I asked his doctor about diets and foods for epileptics his only comment was the Ketogenic diet really wouldn't affect his type of epilepsy. But he didn't have any suggestions. Now, I'm feeling like I'm teaching the doctor. We are with an HMO and are limited in our choices for Dr.'s and considering his ped. neuro is the head of his department we're kinda in a spot. Our next opt out is May of next year so we need to tough it out with him until then. Luckily my keeping a journal and being adamant about my sons needs has helped in opening the Dr.'s mind that he may not have all the answers. Now we are working together, instead of the mighty Doctor knows best.
Hayden starts first grade in fall and they wanted to keep him back because they were not happy with his cognitive - not understanding that it's an epilepsy thing not a maturity thing and we need to learn how to teach him rather than mask the problem. It's a private school and they really don't have much of a program for children with learning disabilities. So I've bullied them and Hayden starts first grade but he will have a tutor with pull-outs during the day.
My main problem now and that's why I'm here and oh so sorry for the long build up - is he of course is a very hyper boy with an active imagination. I just know when he gets into first, his teacher is going to say he has ADD/ADHD and that he needs to be medicated. [groans] So in speaking with the pediatrician about possibly changing his diet to reduce his hyperactivity she was onboard. Her first response was take him off dairy, which is going to be fun because dairy is his main food group. Milk, yogurt, cheese, ice cream. The boy could quite literally live off dairy. Then she recommended going organic. This is a whole new world for me. We aren't bad eaters here. We eat lots of fruits and vegetables. I do more cooking than preparing. But we are also your typical family who eats your regular commercial foods. I feel sooooo lost. Our first change was to put the boy on Almond Milk for his cereal, which was this past Saturday. I think he looks at is as an adventure because he really enjoys this. Thank the Lord!
He has calmed down a bit and his personality seems more aware. which makes us more interested in changing his diet. What I don't understand is how come his neuro didn't suggest these changes to me in the first place? I understand he is a busy Doctor but how come we didn't receive a welcome to epilepsy packet that included dietary suggestions. & NOW WHAT? Where do I begin? Money of course is tight so we can't just wipe out our pantry and start over. Feeding a family of 4 is a tough thing to do already in this economy. But we do want to make smart changes for our family.
Here are some questions I have.
When I asked his pedia about gluten she said he's not autistic so not removing gluten shouldn't be an issue? But I just read on the board that gluten can be an issue?
Why is Soy so bad for Epileptics?
Is goats milk ok or not?
Again sorry for the long post but given that my sons seizures can go a few months with gaps he is not your typical epileptic but he still is one and since we don't see his Dr. very often I'm always full of questions. If you're still here thanks for your help and reading all my yammering on. + I hope I'm in the right forum!
~Marisa