Just when you think things may be settling into the usual crazy routines....something new pops up. That always seems to be the case with Ashley's seizures. We find a medication, or multiple medications, that help for a while - sometimes a long while. Then out the the blue, things change.
For the last week or so, Ashley has been 'jerky'. Usually early in the morning and again at night before bedtime. At first, I didn't know a better way to describe it than the word 'jerky' or strong 'twitches'. She'll be sitting and playing or watching TV, and her upper body will jerk - equally on both sides. I've also seen it start up again during dinner.
These jerks don't seem to bother her, and in fact, sometimes she seems to think they are funny. And to someone not used to the many types of seizures, it can look a little funny. But knowing how Ashley's seizures have changed over her life - different types, shorter or longer, etc. - seizures were the first thing that popped into my mind.
So, after picking the brain of my dear friend, Lynnette, who has also addressed the 'jerks', I believe what Ashley is experiencing is myoclonic seizures.
So, do we need more medicine? Different medicine? Less medicine? I guess the neurologist will answer those questions for me. Has anyone else had experience with these types of seizures? I would love to hear from you...
Could it be EPS? An allergic reaction to medication which can surface even after long durations of the same meds and with med changes.
ReplyDeleteI wish I had some advice to give or more knowledge about seizures. My husband's cousin has hydrocephaelus and tends to have lots of seizures but I haven't seen any of them myself.
ReplyDeleteI really hope the neurologist can provide some good answers for you.
I would tend to go by how many she's having and how much effect they're having on her life in deciding whether or not to treat. If her other seizure types are under pretty good control with whatever she's taking now, I might think twice about upping a particular med or adding a new one to the mix. Kind of like, if it ain't broke, don't fix it.
ReplyDeleteI am most definitely NOT a fan of a whole lot of drugs on board as they tend to just add new issues (whether it's behavior problems, difficulties learning or just plain zonking the person out). Then again, I don't know Ashley's seizure disorder so I don't know whether a new seizure type is often a sign of things spiralling out of control or not. If it was, you might want to be a bit more proactive.
We had one experience with myoclonics from hell many many years ago. The Blue Jay had never had them before (and only once since I believe) but once in the midst of a week-long seizure cluster, the myoclonics started. The problem was she was having them pretty well constantly. She was in hospital at the time and not doing much else but it was still no way to live.
And yet the biggest problem was at night. The child absolutely could not get ANY sleep because the minute she started to fall asleep they would jerk her awake. Our neuro was out of town but we finally got them under control (at least in the night) by giving her ... can't remember exactly what class of drugs it was now, a sleeping pill that wasn't a sleeping pill I think the dr said, I think it was called immovane or innovane) at night just so she could sleep.