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Around April we got the formal diagnosis that Finelybgoode has epilepsy. He had been having infrequent seizures for a few months and always at night (well 530am each and every time to be precise) and having gone through the tests they think it is a particular type of childhood epilepsy that generally causes seizures at night or just when waking up.
Due tot he infrequent nature of them at the time the consultant thought it was best not to medicate however he has since had more seizures and they are scaring the shit out of him and us and the consultant has now mooted medication.
Ob course we will chat it through with them but has anyone got experience of such medication - any side effects etc?
I have adult onset temporal lobe epilepsy, so not really the same but: epilepsy medication is a bit hit or miss, and it can take a bit of tinkering to get it right. You might find the first drug doesn't work or causes unpleasant side effects and he needs to change once or twice. It will depend on the nature of the epilepsy, and also on the consultant neurologist!
Sounds like it may be something he grows out of, hope so and good luck and best wishes to finlayb. Btw I am fine, stable on one simple drug, no siezures or weirdness for 15 years.
Murray
I was diagnosed with epilepsy at 16 after two seizures a month apart, but was fortunate that the first attempt at medicating has controlled the seizures completely for the past 20 years. In my opinion, if your lad is of an age where he can safely swallow pills as required, the benefits of medically controlling the seizures would far outweigh any potential drawbacks (again, this is based on my own experience of no ill-effects of my own medication).
Whilst at the moment your son's seizures have happened at 5.30am, presumably in the safety of your home, there is the risk that they may happen at times when you are not in as familiar an environment, or even when he is in the care of someone other than yourselves. As a parent now I think I'd want to minimise that risk, even if the medication was in the initial stages a bit of a pain to get used to.
Phil
Yes I didn't mean to sound negative about medication. I agree with Phil above, In your situation, as a parent I'd be happy to follow the advice and medicate.
I've taken (think it's an old drug) Epilim since the age of 15/16 and had no side effects - no effect on alcohol etc. Sounds similar to mine - always at night. Keep a log of when they are, plus if he was asleep as this will help him when he eventually needs/wants a driving license. Mine (I think) were caused by being over tired / stress. I continue to take the medication (couple of tablets a day) with no side effects (25 years later) and don't think I've had a fit in years.
The initial fits were horrible, battering my head against whatever was nearby, and feeling like the worst hangover for days.. spewing etc. Later fits weren't as bad.. think I learnt what they felt like whilst half asleep and just went with them rather than trying to panic and fight them, so they didn't take as big a toll on my body.
Possibly make sure nothing too hard (bedside table etc) is by the bed as he may fall out and headbutt it a few times before you hear what's going on (been there, got the scars!)
Hope this helps 🙂
I’ve taken (think it’s an old drug) Epilim since the age of 15/16
I was on that too from around 10 years old following absences/seizures (petit mal). Wasn't great at taking the meds particularly at some uni so probably did drag on longer than it could have but, around 25 years old, i did get far stricter with taking the epilim and, over the course of several years, had my medication reduced gradually and by 30 i was 'cured'. Been that way for 15years now with no relapses. Saying that, my twin brother is still on Epilim now