MidwestMama
New
- Messages
- 14
- Reaction score
- 0
- Points
- 0
My son, 17, has primary generalized convulsive epilepsy (as well as autism and ADHD). The epilepsy was diagnosed at age 5. First med was Dilantin (discontinued because of gum hyperplasia); 2nd was Trileptal (discontinued -- explanation later); and 3rd (very effective to date) is Depakote, 750 mg./day. No other meds for his other conditions.
His pediatric neurologist, whom we’ll call Dr. Smith and whom my son sees once a year, keeps revisiting the topic of taking my son off his meds. There was a time when I was receptive to this idea, and we did in fact try it. But it did not go well, and I am frankly at a loss as to why Dr. Smith would keep suggesting it, given my son’s history. Dr. Smith is never coercive, and he says, “It’s just something to think about -- I respect whatever you decide.” Except that the subject keeps coming up. My son and I both like Dr. Smith as a person, but I am not understanding Dr. Smith’s professional judgment here and am wondering if we should find a new neurologist.
Some background:
In 2005, a year after my son had been diagnosed, we changed pediatric neurologists due to a change in insurance. The new doctor, whom we’ll call Dr. Jones, did an EEG. Based on the results, he felt that the previous diagnosis had been incorrect and that my son should be on a different anticonvulsant -- in his words, “Trileptal isn’t doing anything for him.” So a plan was set in motion to wean my son off Trileptal and to start him on Lamictal. Unfortunately, the Trileptal was apparently doing more than Dr. Jones gave it credit for, and the Lamictal did not build up quickly enough in my son’s system to compensate for the loss of the Trileptal. My son went into status epilepticus and was seizing off and on for 17 hours. After a frantic search to find a hospital bed for him (we were living in the New York City metropolitan area, and even there they could not find a bed for him), he was finally transferred by ambulance to Yale Children’s Hospital. The doctors there were finally able to stop the seizures. My son was put on Depakote, and he stayed in the hospital for several days for observation. It was a horribly traumatic event for all of us, and it took several weeks following his release before my son seemed like himself again.
The Depakote proved to be extremely effective, and my son was seizure-free for several years.
In 2011, we had moved to a new state and were now seeing Dr. Smith. In 2012 Dr. Smith first presented the idea of discontinuing my son’s meds -- a trial run. It seemed reasonable to me -- my son had been seizure-free for several years; some children do outgrow their epilepsy; and medication (especially a heavy-duty one like an anticonvulsant) should be given only when absolutely needed. Dr. Smith did everything I think could have been expected -- extended EEGs, a careful plan of tapering the dosage gradually, and warnings about what to watch for. The process began in early April, and by mid-June my son was completely off his medication. In September, while getting out of the shower, he had a seizure -- he fell to the floor (hitting his head on the tub and gashing it so badly that the ER physician insisted on a CT scan) and had a grand mal seizure. We went to the ER, where he was evaluated and placed back on Depakote (at an increased dosage of 750 mg.) immediately. What was remarkable about this seizure was 1) the length of time it took for him to communicate normally afterward (90 minutes after the seizure ended), and 2) the aftermath. For three weeks afterward, my son experienced mood swings, increased anger and anxiety, and temporary loss of cognitive function: letter reversals when writing; and difficulty with simple reading comprehension, handwriting, following written directions, mental math (which was previously easy for him), and math skills that he had learned in recent months. He also could not remember the steps involved in making his favorite dish, something that he had been able to do from memory.
I mentioned this to Dr. Smith, who recommended a neuropsychological evaluation. The evaluation was very thorough and very informative, but the information it yielded was not really surprising (we already knew he was on the autism spectrum and that his executive functioning was quite impaired). It explained much of why he behaves as he does and what his strengths and weaknesses in learning are -- but it did not address (and perhaps could not have) the cognitive fallout from his seizure. Eventually that fallout seemed to resolve. My son has continued on Depakote since then and has been seizure-free for nearly 4 years.
Given the episode in 2005 and the episode in 2012, both of which occurred following a change in medication, it seems obvious to me as a layperson -- not to mention as a mother -- that my son needs medication for his epilepsy. We found one that works very well, and we did the right thing by experimenting to see how my son did without it (i.e., not well). I realize that, as Dr. Jones put it in 2005, “Depakote is not aspirin.” But a seizure is not a headache, either. It seems obvious to me -- again, as a layperson -- that my son is not outgrowing his epilepsy. And yet Dr. Smith once again told me that he wanted me “just to think about” taking my son off his meds; he said that because my son’s EEGs are normal (he has one every couple of years), he doesn’t think the Depakote “is really doing anything for him.” As a layperson but as someone who knows my son’s history, I disagree -- the Depakote is in all likelihood preventing what happened in 2005 and 2012. And given the aftermath of the last seizure (the head injury *and* the loss of memory for several weeks), I do not view a seizure as an essentially benign neurological “accident” after which one can just dust oneself off and continue merrily on one’s way. Given the choice between medication that has prevented any seizures when my son has been on it and no medication, during which time my son had two significant seizures -- it’s a very simple choice to me and to my son.
So why is the choice not so simple to Dr. Smith?
Neurologists -- at least, the ones we’ve seen -- seem to have a curious perspective that views seizures as the “essentially benign neurological ‘accident’” I mentioned earlier -- “Anticonvulsants are heavy-duty meds. Let’s not give them to your kid if we don’t have to. So your kid has a seizure. Seizures happen! Lighten up!” At best, the doctor thinks seizures are a clinical fascination; it’s like the meteorologist who can’t wait for the next big storm. At worst, the doctor is cavalier about a serious medical event and/or is too removed from the reality of seizures and has never witnessed his child, or anyone else’s, in a prolonged episode of uncontrollable status.
My question isn't about what I should do -- I already know that I don't want my son's meds discontinued. The question is -- what could Dr. Smith be thinking and has anyone else been in this situation?
His pediatric neurologist, whom we’ll call Dr. Smith and whom my son sees once a year, keeps revisiting the topic of taking my son off his meds. There was a time when I was receptive to this idea, and we did in fact try it. But it did not go well, and I am frankly at a loss as to why Dr. Smith would keep suggesting it, given my son’s history. Dr. Smith is never coercive, and he says, “It’s just something to think about -- I respect whatever you decide.” Except that the subject keeps coming up. My son and I both like Dr. Smith as a person, but I am not understanding Dr. Smith’s professional judgment here and am wondering if we should find a new neurologist.
Some background:
In 2005, a year after my son had been diagnosed, we changed pediatric neurologists due to a change in insurance. The new doctor, whom we’ll call Dr. Jones, did an EEG. Based on the results, he felt that the previous diagnosis had been incorrect and that my son should be on a different anticonvulsant -- in his words, “Trileptal isn’t doing anything for him.” So a plan was set in motion to wean my son off Trileptal and to start him on Lamictal. Unfortunately, the Trileptal was apparently doing more than Dr. Jones gave it credit for, and the Lamictal did not build up quickly enough in my son’s system to compensate for the loss of the Trileptal. My son went into status epilepticus and was seizing off and on for 17 hours. After a frantic search to find a hospital bed for him (we were living in the New York City metropolitan area, and even there they could not find a bed for him), he was finally transferred by ambulance to Yale Children’s Hospital. The doctors there were finally able to stop the seizures. My son was put on Depakote, and he stayed in the hospital for several days for observation. It was a horribly traumatic event for all of us, and it took several weeks following his release before my son seemed like himself again.
The Depakote proved to be extremely effective, and my son was seizure-free for several years.
In 2011, we had moved to a new state and were now seeing Dr. Smith. In 2012 Dr. Smith first presented the idea of discontinuing my son’s meds -- a trial run. It seemed reasonable to me -- my son had been seizure-free for several years; some children do outgrow their epilepsy; and medication (especially a heavy-duty one like an anticonvulsant) should be given only when absolutely needed. Dr. Smith did everything I think could have been expected -- extended EEGs, a careful plan of tapering the dosage gradually, and warnings about what to watch for. The process began in early April, and by mid-June my son was completely off his medication. In September, while getting out of the shower, he had a seizure -- he fell to the floor (hitting his head on the tub and gashing it so badly that the ER physician insisted on a CT scan) and had a grand mal seizure. We went to the ER, where he was evaluated and placed back on Depakote (at an increased dosage of 750 mg.) immediately. What was remarkable about this seizure was 1) the length of time it took for him to communicate normally afterward (90 minutes after the seizure ended), and 2) the aftermath. For three weeks afterward, my son experienced mood swings, increased anger and anxiety, and temporary loss of cognitive function: letter reversals when writing; and difficulty with simple reading comprehension, handwriting, following written directions, mental math (which was previously easy for him), and math skills that he had learned in recent months. He also could not remember the steps involved in making his favorite dish, something that he had been able to do from memory.
I mentioned this to Dr. Smith, who recommended a neuropsychological evaluation. The evaluation was very thorough and very informative, but the information it yielded was not really surprising (we already knew he was on the autism spectrum and that his executive functioning was quite impaired). It explained much of why he behaves as he does and what his strengths and weaknesses in learning are -- but it did not address (and perhaps could not have) the cognitive fallout from his seizure. Eventually that fallout seemed to resolve. My son has continued on Depakote since then and has been seizure-free for nearly 4 years.
Given the episode in 2005 and the episode in 2012, both of which occurred following a change in medication, it seems obvious to me as a layperson -- not to mention as a mother -- that my son needs medication for his epilepsy. We found one that works very well, and we did the right thing by experimenting to see how my son did without it (i.e., not well). I realize that, as Dr. Jones put it in 2005, “Depakote is not aspirin.” But a seizure is not a headache, either. It seems obvious to me -- again, as a layperson -- that my son is not outgrowing his epilepsy. And yet Dr. Smith once again told me that he wanted me “just to think about” taking my son off his meds; he said that because my son’s EEGs are normal (he has one every couple of years), he doesn’t think the Depakote “is really doing anything for him.” As a layperson but as someone who knows my son’s history, I disagree -- the Depakote is in all likelihood preventing what happened in 2005 and 2012. And given the aftermath of the last seizure (the head injury *and* the loss of memory for several weeks), I do not view a seizure as an essentially benign neurological “accident” after which one can just dust oneself off and continue merrily on one’s way. Given the choice between medication that has prevented any seizures when my son has been on it and no medication, during which time my son had two significant seizures -- it’s a very simple choice to me and to my son.
So why is the choice not so simple to Dr. Smith?
Neurologists -- at least, the ones we’ve seen -- seem to have a curious perspective that views seizures as the “essentially benign neurological ‘accident’” I mentioned earlier -- “Anticonvulsants are heavy-duty meds. Let’s not give them to your kid if we don’t have to. So your kid has a seizure. Seizures happen! Lighten up!” At best, the doctor thinks seizures are a clinical fascination; it’s like the meteorologist who can’t wait for the next big storm. At worst, the doctor is cavalier about a serious medical event and/or is too removed from the reality of seizures and has never witnessed his child, or anyone else’s, in a prolonged episode of uncontrollable status.
My question isn't about what I should do -- I already know that I don't want my son's meds discontinued. The question is -- what could Dr. Smith be thinking and has anyone else been in this situation?
-- but it could've also meant, "I glanced at your chart, and ten others, before I rushed out of the office last night." Your point is a good one -- he may simply need to be reminded of the specifics of the case. 