juvenille myclonic epilepsy/tourettes, any experiences please???

[MissTired]

my ds has jerky movements, our camhs nurse is undecided whether its juvenille myclonic epilepsy or tourettes as apparently looks like both, after having read about both and watch youtube videos of people with both im still undecided, can anyone offer any info that might help me stop trying to work it out while we wait to see paed in october!??! anything major that would set them apart that i may be missing???

this jerk things he does are completely involuntary and he is unaware hes done it afterwards too, he is 4 and a half and ha autism and dyspraxia too if that makes any difference!?

hi sorry don't have any experience of Tourette's but ds2 had myoclonic seizures - now controlled by anti-epileptic medication. If he's completely unaware of the jerks (which is also our name for ds2's myoclonic seizures) I would tend towards thinking they are seizures rather than tics, but others might come to educate us further.

Nevertheless an EEG would be the best way of determining which one your ds has - have they referred you for one?

Also it might be worth keeping a diary of how often and when he does them, and whether there seem to be any triggers, as this should be useful for whoever you see in October.

Thinking of you, anyway.

ooh thanks will do a diary good idea, he does them a lot and has only started them since he got his wii - which camhs nurse thinks therefore is a sign of seizures, but they are quite frequent which seems more on the tourette side of things!?!?

how often did your ds have the seizures?

weve not been referred for anything yet hopefully paed will do that in october unless camhs can get her to before then as they are going to speak to paed asap to ask advice and if she will see us about it!

anyone else any experiences they might share with me??

bump again just in case anyone else can help and hasnt seen it

hi again MissTired ds2 had them really frequently until the meds started to work - say about 20 a day although it's hard to count as they definitely come in clusters. So I wouldn't say the frequency necessarily points to Tourette's.

Isn't Tourette's supposed to mean physical and verbal tics together? Does your ds exhibit any of the verbal tics?

Hope someone comes along with more helpful advice. and hope CAMHS helps you with referrals.