myoclonic epilepsy

[mojo_b49]

I know this is a bit of a long shot, but does anyone have experience of a toddler with this condition? My little boy was diagnosed with it a few months ago, his medication doesn't seem to be having any effect, just wondered if anyone knows anything about it. I have read up about it quite a lot but it would be nice to hear from someone who has experienced it

[Jules001]

my son has this condition, although he is 17. He had his one and only seizure at school when he was 15. He takes the lowest dose of Lamictal (Lamotrigine) possible and so far since taking it he has had no further seizures. He has had a couple of hand jerks, but this is when he has been tired or been using the computer for a long time. My son is also photo-sensitive. We were told at the hospital that the dosage of the medication would need to be built up to the dose he now takes, so it would seem that the medication isn't fully effective until it is at the right level, it is also based on age and weight so will need further readjustments. If you are concerned in anyway, I would suggest either going to your GP or making an appointment to see the Paediatric(sp) Consultant.

[mojo_b49]

Thanks, we are trying to get hold of the consultant at the moment as it is a long time till our next appointment, due to the fact that he needs a brain scan and they are waiting for a new mri scanner! He is only two years old, we are hoping he will grow out of it. Have they told you whether this is likely with your son?

[Jules001]

they have said that he might grow out of it and when we went for our last appointment they tried to get him to stop taking the tablets, but he said he didn't feel ready as it wasn't a good time, with exams and learning to drive etc. He recently had quite a bad hand jerking session as he was overtired when we were travelling on holiday so we know that he isn't ready to come off the medication yet

[motherhen]

Hi mojo ,both my kids have epilepsy .they have had it since they were 14 ,my daughter is now 22 and my son nearly 21.I also have it but been clear of fits for 20yrs.my girl is under the nuerology hospital in queens st london as she couldn't get them under control.If your not happy see if your GP can refere your son . they did wonders for my girl.

[mojo_b49]

Thanks motherhen, we have been in touch with the consultant again and he has increased the dosage so we are waiting to see if that has any effect. We live in Manchester so London would be a bit of a trek, but worth bearing in mind if we don't see any improvement

[*Red*Queen*]

I also have epilepsy, had it since I was 16, now 29,  still have regular fits, but waiting for the results of MRI scan *fingers crossed*  I'm thankful that my 3 girls don't have it.

Good luck to your little boy, I hope they get his medication sorted soon :) xx