epilepsy question - eyelid myoclonia?

[hazeyjane]

Ds (3.6) has just seen his paed, who watched a video of ds's eyelid flickering and said he thought it could be eyelid myoclonia with absences.

Has anyone any experience of this?

He is arranging an eeg (ds had one a 2, but there was nothing of significance) and contacting a neurologist at John Radcliffe.

Ds also had an episode at xmas, where he got very cold (we were outside) - he lost tone, and was very floppy, his eyes started flickering and rolling up, and he was unresponsive when I touched his nose. When he had warmed up he was ok. Paed thought this also sounded seizure related, but I didn't ask - would this be a stronger version of the above seizures or a different sort altogether?

Thankyou zzzzz, I was hoping you would be around I think we were expecting it, tbh, as paed says the last year has seen an increase in seizure like activity.

The thing at xmas scared me because the only way I can describe it was like watching him 'shut down', it was horrible.

Do you know of any good resources wrt info about epilepsy - I have always followed your initial advice to me about recording stuff and writing a seizure diary (which paed complimented me on!), but feel like I need to do some reading up (without too much random googling)

Sorry to hear you are feeling useless, zzzzz. I hope your girl is getting on ok - that must have been a terrifying time for you all.

I have ordered the young epilepsy guide for parents, and rung gp so she is up to date. Thankyou

Hi hazyjane, it is worrying, but keeping notes really is the best thing, and our neuro wants us to film it, but have not manage to yet. There are a few different types, but I only really know ds's ds has complex partial seizures with occasional secondary generalised, they do not happen very often, between 3-7 weeks last between 10-40 secs ( but can reoccur a number of times in a 24 h period), he turns grey and lip smacks, sometimes garbles. Once he had one walking to school, he carried on walking whilst having it while I supported him as goes limp. He is completely unresponsive during the time, then after he comes round he has a deep hour for a least several hours.

We were told depending on how the body reacts during the seizure you can locate which part of the brain is the source, hence wanting us to record it. We use to have warnings - loss of appetite and lie in, having them when tired, stressed or I'll, but now no warnings.

As zzzzz mentioned epilepsy nurses, they are brilliant and more accessible then the consultants, she has helped a lot. I tracked ours down looking on the nhs website in our area, glad I did. Otherwise I have not found any good sources yet. The search continues...

Thankyou Spiraling.

I will ask our gp about epilepsy nurses, ds has a community nurse, so she may know.

I spoke to preschool about it today, and they wanted to know if there were any guidelines on when they should seek help, and what to do, in those instances.

Spiraling - has your ds had an EEG which showed seizures occurring?

I saw a school nurse and she filled in an epilepsy action plan for the school, how the epilepsy presents itself and what to do with ds, which was send him to the office for a sleep and so they can keep a close eye on him. The staff at school have also had epilepsy training, however, ds teacher did not realise he was having a seizure his class mates did. I would ask the community nurse and also ask the consultant secretary if she knows.

Ds had an EEG did not find anything, the second one they caught it, but this day he was continuing seizing every time they moved him which was a lot, 3 in twenty minutes. As infrequent makes it hard to catch, good to know they could not induce one I guess. We were not allowed to leave the hospital them until he started his medication. Still trying to find one that works.

You learn to chase people and ring, otherwise it all takes a lot of time.