Hi everyone. Since I don't quite know how to start, let me start like this:
It's been two weeks since my wife took our 11 month old son (youngest of two) to the emergency room. And I still can't put words to the feelings that I've been through since. Me? Well, I'm just your not very average 38 yr old dad. Not very interesting on the whole. My son however quickly became very interesting since it turns out not only does he have epilepsy, he has some weirdo rare form of it as well. Listen to this:
He gets 2 second myoclonic attacks (arms raising and jerking, head falling forward and eyelids fluttering) when he - get this - hits his head. And sometime when he is really surprised by a loud and sharp noise (like for example when he bangs the lid on one of the boxes in his room. Ever thought of how often a one yr old hits their head? Let me know because believe me - I can tell you. Anyway, he was put on clobazam (bensodiazepines being an all time favorite for doctors everywhere) which didn't do one thing and while we are waiting for the results of the MRI they want to put him on valproic acid.
Let's back up a bit. Ok. So he gets about 20 to 30 of these on an average day (yeah, we keep track). Every now and then there is an unexplainable one but generally it's either hitting himself in the head with a hard object, banging his head against a hard object or trying to steal his own pacifier and just giving himself a seizure. You get the idea. The thing is that they don't really seem to bother him. In fact, they seem more like the pause button on an old school VCR. He can be laughing hysterically, bang himself in the head, seize for two seconds and then go right back to laughing as if nothing happened. Tired? Drowsy? Angry? No way. So what's the problem you ask? Well, if he has what we think he has (and the doctors seem to agree although they are hesitant to say anything at all most of time, mainly due to the fact that the MRI results are important for the differential diagnosis but considering that he walks a bit and talks quite a lot I consider his neuro development to be par/above par for his age so screw them for now) then we are looking at Benign myoclonic epilepsy in infants, or rather a subset which is lovingly referred to as Reflex myoclonic epilepsy in infants (or RMEI for short for you acronym lovers out there, you know who you are). It has a pretty good prognosis. In fact almost all kids with it become seizure free and without signs of mental retardation. But then again it's rare. It's hysterically rare. It's so rare that nobody at our rather large hospital has EVER seen it. In fact they didn't even know it existed until they met this little fellow.
So the problem is that I am looking at a kid who is obviously undisturbed by the seizures and wondering what the hell I am supposed to do. Bensodiazepines and valproic acid have notoriously nasty side effects, the latter can cause liver failure in children under the age of 2 and both of them affect memory and other cognitive functions.
In a 1 yr old? In the most expansive phase of their development I am supposed to stuff him full of AEDs?
I... Well, I don't sleep much these days. My job, nay my whole reason for being is to ensure that his safety is guaranteed. That he is being looked out for. And here I have to make a very, VERY hard choice. There are cases in the studies of children that have not taken any AEDs. The outcome is the same for them as for the ones on medication. But they are very few, too few to be statistically significant. On the other hand there are numerous studies that show the negative effects on the drugs in question. As well as potentially lethal side effects.
I am sure there are parents out there, perhaps even in here who have been in my situation. Who have sat with their head in their hands and cried and wondered what the right choice is. I don't expect you to answer my question, I think that is for me (and my wife) to do. But how have you dealt with it? And of course all your thoughts on the subject are appreciated.
And again hi. It felt good writing these words, I am quiet way too much these days.
It's been two weeks since my wife took our 11 month old son (youngest of two) to the emergency room. And I still can't put words to the feelings that I've been through since. Me? Well, I'm just your not very average 38 yr old dad. Not very interesting on the whole. My son however quickly became very interesting since it turns out not only does he have epilepsy, he has some weirdo rare form of it as well. Listen to this:
He gets 2 second myoclonic attacks (arms raising and jerking, head falling forward and eyelids fluttering) when he - get this - hits his head. And sometime when he is really surprised by a loud and sharp noise (like for example when he bangs the lid on one of the boxes in his room. Ever thought of how often a one yr old hits their head? Let me know because believe me - I can tell you. Anyway, he was put on clobazam (bensodiazepines being an all time favorite for doctors everywhere) which didn't do one thing and while we are waiting for the results of the MRI they want to put him on valproic acid.
Let's back up a bit. Ok. So he gets about 20 to 30 of these on an average day (yeah, we keep track). Every now and then there is an unexplainable one but generally it's either hitting himself in the head with a hard object, banging his head against a hard object or trying to steal his own pacifier and just giving himself a seizure. You get the idea. The thing is that they don't really seem to bother him. In fact, they seem more like the pause button on an old school VCR. He can be laughing hysterically, bang himself in the head, seize for two seconds and then go right back to laughing as if nothing happened. Tired? Drowsy? Angry? No way. So what's the problem you ask? Well, if he has what we think he has (and the doctors seem to agree although they are hesitant to say anything at all most of time, mainly due to the fact that the MRI results are important for the differential diagnosis but considering that he walks a bit and talks quite a lot I consider his neuro development to be par/above par for his age so screw them for now) then we are looking at Benign myoclonic epilepsy in infants, or rather a subset which is lovingly referred to as Reflex myoclonic epilepsy in infants (or RMEI for short for you acronym lovers out there, you know who you are). It has a pretty good prognosis. In fact almost all kids with it become seizure free and without signs of mental retardation. But then again it's rare. It's hysterically rare. It's so rare that nobody at our rather large hospital has EVER seen it. In fact they didn't even know it existed until they met this little fellow.
So the problem is that I am looking at a kid who is obviously undisturbed by the seizures and wondering what the hell I am supposed to do. Bensodiazepines and valproic acid have notoriously nasty side effects, the latter can cause liver failure in children under the age of 2 and both of them affect memory and other cognitive functions.
In a 1 yr old? In the most expansive phase of their development I am supposed to stuff him full of AEDs?
I... Well, I don't sleep much these days. My job, nay my whole reason for being is to ensure that his safety is guaranteed. That he is being looked out for. And here I have to make a very, VERY hard choice. There are cases in the studies of children that have not taken any AEDs. The outcome is the same for them as for the ones on medication. But they are very few, too few to be statistically significant. On the other hand there are numerous studies that show the negative effects on the drugs in question. As well as potentially lethal side effects.
I am sure there are parents out there, perhaps even in here who have been in my situation. Who have sat with their head in their hands and cried and wondered what the right choice is. I don't expect you to answer my question, I think that is for me (and my wife) to do. But how have you dealt with it? And of course all your thoughts on the subject are appreciated.
And again hi. It felt good writing these words, I am quiet way too much these days.