Hi all,
Firstly, thanks for the interesting posts that I’ve read so far.
I’m hoping that some of you wiser and more experienced people might be able to give me some advice about how to deal with my son’s seizures. In particular I’d like to ask you what you think about the options of either treating them as they occur (which is very infrequently) versus ongoing preventative medication. We really don’t have a good perspective on those issues.
Apologies if this gets long, but the situation is that Matt is 19 and quite severely intellectually disabled. This means that it’s very hard to discuss any health issues and get a useful or accurate answer from him. To give an example, when he got appendicitis he just seemed a bit subdued, and denied he was in pain. But when I gave him a band-aid and asked him to stick it where it hurt. he placed it right over his appendix. We got him straight to hospital and then had to wait the whole day for proper scans, by which time it had burst. They operated that evening and we all then spend nine days there! So the chances of getting information from him about what side effects he might be having from any regular medication are pretty much zip.
We're reluctant to put him on a regular regime of drugs when we'll have difficulty assessing what effect they're having on him. It would also be impossible to tell whether they were working, as a further gap of five or ten years could mean something or nothing. But we also want what's best for him.
His seizures are grand mal style with loud groans, collapsing, extreme facial distortions, body stiffening and twitching, etc. but he has only had a total of seven. The first was when he was 5 and he had the second one three days later. The first subsided within a few minutes but the second required a quick trip to the local hospital for treatment with medication. There was then (roughly speaking) a gap of a year, then another year, then two years, after which it lengthened to five years. By that time he was fourteen. Finally, last Friday (the thirteenth of course!), after another five years, he had another one. When he had the first episodes he had various scans and tests, which showed nothing useful, and we were given a simple kit to allow us to administer midazolam style liquid medication in the event of any further seizures. On a couple of occasions the seizures subsided without intervention and on a couple we administered the medication rectally, which worked pretty quickly.
All previous episodes occurred as he was drifting down into sleep, and the ‘pattern’ seemed to suggest that he might be ‘growing out of it’. But on Friday one happened around 6pm when he was sitting at a table drawing. It also seemed a fair bit more severe than before. The medication didn’t seem to be having the same effect, the seizure kept going, and we ended up going to the hospital again. The episode eventually stopped without further treatment but he’s taken a couple of days to recover and is not quite 100% yet. Of course he’s a lot bigger and more muscular than five years ago and that might partly account for the apparent reduced effectiveness of the dosage. It was reviewed last year, but we’re seeing the GP tomorrow to see what she suggests.
We have not used the ambulance service before, but there is one stationed reasonably close and the staff apparently have the ability to treat seizures with the appropriate medications if our effects don’t seem to be enough. This probably sounds like a lot of fuss for a mere seven seizures, but the last episode was pretty severe, and the fact that it was in the daytime (which never happened before) has given us some concerns about some of his usual daily routines too. He does goes to a Lifeskills program for a few hours a week and they have assured us that their policy is to call immediately for an ambulance if any clients have anything other than minor events. So I think we’d probably be OK to continue as we are.
But you can’t beat hearing from people with experience, so we’d be grateful if you could tell us what you think, based on your own understanding of how it all works.
Thank you for reading,
Chris
Firstly, thanks for the interesting posts that I’ve read so far.
I’m hoping that some of you wiser and more experienced people might be able to give me some advice about how to deal with my son’s seizures. In particular I’d like to ask you what you think about the options of either treating them as they occur (which is very infrequently) versus ongoing preventative medication. We really don’t have a good perspective on those issues.
Apologies if this gets long, but the situation is that Matt is 19 and quite severely intellectually disabled. This means that it’s very hard to discuss any health issues and get a useful or accurate answer from him. To give an example, when he got appendicitis he just seemed a bit subdued, and denied he was in pain. But when I gave him a band-aid and asked him to stick it where it hurt. he placed it right over his appendix. We got him straight to hospital and then had to wait the whole day for proper scans, by which time it had burst. They operated that evening and we all then spend nine days there! So the chances of getting information from him about what side effects he might be having from any regular medication are pretty much zip.
We're reluctant to put him on a regular regime of drugs when we'll have difficulty assessing what effect they're having on him. It would also be impossible to tell whether they were working, as a further gap of five or ten years could mean something or nothing. But we also want what's best for him.
His seizures are grand mal style with loud groans, collapsing, extreme facial distortions, body stiffening and twitching, etc. but he has only had a total of seven. The first was when he was 5 and he had the second one three days later. The first subsided within a few minutes but the second required a quick trip to the local hospital for treatment with medication. There was then (roughly speaking) a gap of a year, then another year, then two years, after which it lengthened to five years. By that time he was fourteen. Finally, last Friday (the thirteenth of course!), after another five years, he had another one. When he had the first episodes he had various scans and tests, which showed nothing useful, and we were given a simple kit to allow us to administer midazolam style liquid medication in the event of any further seizures. On a couple of occasions the seizures subsided without intervention and on a couple we administered the medication rectally, which worked pretty quickly.
All previous episodes occurred as he was drifting down into sleep, and the ‘pattern’ seemed to suggest that he might be ‘growing out of it’. But on Friday one happened around 6pm when he was sitting at a table drawing. It also seemed a fair bit more severe than before. The medication didn’t seem to be having the same effect, the seizure kept going, and we ended up going to the hospital again. The episode eventually stopped without further treatment but he’s taken a couple of days to recover and is not quite 100% yet. Of course he’s a lot bigger and more muscular than five years ago and that might partly account for the apparent reduced effectiveness of the dosage. It was reviewed last year, but we’re seeing the GP tomorrow to see what she suggests.
We have not used the ambulance service before, but there is one stationed reasonably close and the staff apparently have the ability to treat seizures with the appropriate medications if our effects don’t seem to be enough. This probably sounds like a lot of fuss for a mere seven seizures, but the last episode was pretty severe, and the fact that it was in the daytime (which never happened before) has given us some concerns about some of his usual daily routines too. He does goes to a Lifeskills program for a few hours a week and they have assured us that their policy is to call immediately for an ambulance if any clients have anything other than minor events. So I think we’d probably be OK to continue as we are.
But you can’t beat hearing from people with experience, so we’d be grateful if you could tell us what you think, based on your own understanding of how it all works.
Thank you for reading,
Chris
