justflyingin
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Hello,
My son, 20, has recently been diagnosed with epilepsy. He had his first official seizure in March, and then two in April. He is a college student and seriously sleep deprived (works night shift on security sometimes--this means he gets interrupted sleep). He is in college in SC.
I am an American living in Poland, so I've felt frustrated. We recently went back to the states for a month where I discovered this forum which has been wonderful, BTW.
My son has been put on Keppra for the seizures. His seizures have only come in the night, while he is sleeping, and seem to be related to his sleep cycle (he wonders if it is related to REM disorder?). The Keppra is doing terrible things to his memory and in one class, where he had a 98% average, his last two tests were 50% and then a C (not sure the percentage). He squeaked out with an A-, since he started out so high. He hates the effects of the drug on his system as he said it is making it almost impossible to memorize anything!
He has 500 mg (Keppra), and the doctor told him to take 2 a day. He only took one a day until he had another seizure. Then, he started taking two a day--one am, one pm.
The medicine hasn't completely stopped the seizures (grand mal type) that I began to wonder if there is something we can begin to look for that might help him --some natural method of control. All of his tests have come back completely normal--his sleep deprived test and his MRI, etc. Everything.
So, I've begun to read here. I'm not completely through Robin's daughter's story, Rebecca, yet, but am eagerly reading it. I've learned so much already. Because my learning curve is so great, I've not read more than an hour at time since things can be frustrating when you don't know what things are (abbreviations, types of seizures, etc.) I bought a couple books by a Dr. named Devinsky, since I've known so little about the problem called epilepsy.
So far the doctors haven't been able to help him at all. All we have to show is at least $7000 in hospital bills for the three times they've taken him to the ER. We don't have this kind of money nor does he (we happen to be missionaries and are running a charitable organization--but it isn't a "big money" operation). So, we can't live with ER bills piling up (his insurance only covers up to $1500 per er visit and one of those alone was 5000 for the hospital and $800 for the ambulance.)
My point is--we must find a better solution. The medicine didn't completely stop his seizures and he even had one when he wasn't sleep deprived at all (after school was out). So, if the medicine isn't helping him get rid of the seizures, he is willing to try to find something else because the side effects of the medicine are completely undesirable.
He is working at a camp this summer as a counselor. He will not be sleeping in the same room as the guys he is counseling (someone else will do that every night for him) but hopes to have a good summer. He got his Keppra filled and using a generic was $85. That was a big shock for him since he had to pay for it completely out of pocket. He is weaning himself off it and is down to 1/2 of a pill once a day now.
I thought I'd work on getting him some magnesium, since I've been reading that possibly that is something that might help. He's not had a whole lot of seizures, so it is difficult to see a pattern...he had three last week in a row--Sunday, Monday and Tuesday, but nothing since. Before that, he had maybe had a total of 5.
He did take a big fall on an ice skating rink last summer, and that may be the trigger that has lowered his ability to withstand sleep deprivation, etc. On the other hand, the neurologists can find nothing wrong, and so...
I read on here that often finding the right medicine is a matter of trying different things until you find the one that works for you. Since I care more about my son than any doctor ever will, I figured that I'd at least read about it. He has almost no access to the internet this summer (he gets to use a computer about once a week for an hour), but he can call us on Sundays and Monday mornings, so I can tell him what I've learned then.
Because he is so far away, I've felt not a little frustrated. I'm sure most of you have felt that way even if you are close by!
I'll continue to read here and learn. I have much to learn.
My son, 20, has recently been diagnosed with epilepsy. He had his first official seizure in March, and then two in April. He is a college student and seriously sleep deprived (works night shift on security sometimes--this means he gets interrupted sleep). He is in college in SC.
I am an American living in Poland, so I've felt frustrated. We recently went back to the states for a month where I discovered this forum which has been wonderful, BTW.
My son has been put on Keppra for the seizures. His seizures have only come in the night, while he is sleeping, and seem to be related to his sleep cycle (he wonders if it is related to REM disorder?). The Keppra is doing terrible things to his memory and in one class, where he had a 98% average, his last two tests were 50% and then a C (not sure the percentage). He squeaked out with an A-, since he started out so high. He hates the effects of the drug on his system as he said it is making it almost impossible to memorize anything!
He has 500 mg (Keppra), and the doctor told him to take 2 a day. He only took one a day until he had another seizure. Then, he started taking two a day--one am, one pm.
The medicine hasn't completely stopped the seizures (grand mal type) that I began to wonder if there is something we can begin to look for that might help him --some natural method of control. All of his tests have come back completely normal--his sleep deprived test and his MRI, etc. Everything.
So, I've begun to read here. I'm not completely through Robin's daughter's story, Rebecca, yet, but am eagerly reading it. I've learned so much already. Because my learning curve is so great, I've not read more than an hour at time since things can be frustrating when you don't know what things are (abbreviations, types of seizures, etc.) I bought a couple books by a Dr. named Devinsky, since I've known so little about the problem called epilepsy.
So far the doctors haven't been able to help him at all. All we have to show is at least $7000 in hospital bills for the three times they've taken him to the ER. We don't have this kind of money nor does he (we happen to be missionaries and are running a charitable organization--but it isn't a "big money" operation). So, we can't live with ER bills piling up (his insurance only covers up to $1500 per er visit and one of those alone was 5000 for the hospital and $800 for the ambulance.)
My point is--we must find a better solution. The medicine didn't completely stop his seizures and he even had one when he wasn't sleep deprived at all (after school was out). So, if the medicine isn't helping him get rid of the seizures, he is willing to try to find something else because the side effects of the medicine are completely undesirable.
He is working at a camp this summer as a counselor. He will not be sleeping in the same room as the guys he is counseling (someone else will do that every night for him) but hopes to have a good summer. He got his Keppra filled and using a generic was $85. That was a big shock for him since he had to pay for it completely out of pocket. He is weaning himself off it and is down to 1/2 of a pill once a day now.
I thought I'd work on getting him some magnesium, since I've been reading that possibly that is something that might help. He's not had a whole lot of seizures, so it is difficult to see a pattern...he had three last week in a row--Sunday, Monday and Tuesday, but nothing since. Before that, he had maybe had a total of 5.
He did take a big fall on an ice skating rink last summer, and that may be the trigger that has lowered his ability to withstand sleep deprivation, etc. On the other hand, the neurologists can find nothing wrong, and so...
I read on here that often finding the right medicine is a matter of trying different things until you find the one that works for you. Since I care more about my son than any doctor ever will, I figured that I'd at least read about it. He has almost no access to the internet this summer (he gets to use a computer about once a week for an hour), but he can call us on Sundays and Monday mornings, so I can tell him what I've learned then.
Because he is so far away, I've felt not a little frustrated. I'm sure most of you have felt that way even if you are close by!
I'll continue to read here and learn. I have much to learn.
