Juvenile Myoclonic Epilepsy

[Jules001]

My 16 year son was diagnosed with this in January 2003 after he suffered a seizure out of the blue. He has been on a very low dose of Lamictal to control it and thankfully has suffered no more seizures or involuntary limb jerking. The consultant at the hospital has now suggested that he comes off the medication as it is possible that he may have outgrown the condition. Both my son and myself feel that it is not the right time for him to stop the medication as he will be 17 in a few weeks time and would like to apply for his provisional driving licence and start taking lessons, if he were to come off the tablets and then have a seizure he would not be allowed to drive for a year at least.He is also at college and will sit exams in May/June (so added stress). My question is does anybody have direct experience of stopping the medication and then further seizures occuring and/or growing out of the condition.

[hopalong]

As I understand your son will have to go 5 years without fits before he can apply for a lience so even if he stays on his medicatiom he will still haev to wait 5 years.  So it may be worth while coming of them

[smudge]

Jules - I don't know anything about Epilepsy, but wish your son well. Good luck.

[Jules001]

Hopalong - according to the DVLA website it states that the person must have had 1 year free from seizures before being allowed a licence, there are other restriction if he comes off the medication.

Smudge - thanks

[Hgrove]

I do not have knowledge of this condition but your considerations seem eminently sensible to me.  It would be a good idea to follow your (and your son's) instinct.

[hopalong]

Jules001   I apologise for the wrong info I gave you.    My dad had epilespy and was unable to drive.  

[Jules001]

Hopalong - apologies accepted, as you can imagine he is quite keen to learn to drive and we have looked into this in great depth ;)

[ayla44]

I don't know about Lamictal or your son's condition. IMO unless there are any side effects to be concerned about it seems very poor timing to consider stopping medication at this important time in your son's life.

My dp has been experiencing nocturnal seizures for 2 years. He takes epilim and has stopped taking it twice and reduced it once (without seeking doctors advice).  He has not been seizure free after stopping his medication, however he did stop suddenly and this itself can cause seizures apparently.

http://www.epilepsy.org.uk/info/juvenile.html

I wish your son every success in his exams & best of luck whatever you decide to do.

[GYPSEY]

I am a 23 year old female who has had Juvenile Myoclonic Epilepsy since age 11. I have Myoclonic seizures, Abscence seizures and I am photosensitive. I take 1 x 250mg of Keppra in the mroning and 1x 500mg of Keppra at night (this is becuase it completely knocks me out and I work full time during the day, so I cannot be sleepy) I have never been able to get control of it, and so far all the Keppra has done is stop me from having so many Myoclonic seizures. I still get everything regulary. I think that it is quite rare for someone not to grow out of this illness, but it seems I am one of the unlucky ones. I presonally would not stop taking the medication until the neuro's have given you the all clear. Taking medications can cause an onset of seizures again, so you cannot be too careful. As long as your son feel he is safe to drive, and he has not had a seizure for a year then there should be no probs. I personally do not drive, I am not safe enough to, I need to consider other people and i do not want to be responsible for hurting anyone or myself.

[motherhen]

both my children have juvenile myoclonic epilepsy,they inherited from me.They have had it since they were 14 which was the same age that i developed it.               my son is under control with lamotragine but my daughter has ad a rough time and has lost her job through it.But don't give up hope it's not life threatening.

[munkeebum]

Hi i also was diagnosed with epilepsy at 16 (i'm 17 now) and after being put on a low dose of lamictal my seizures stopped as well. I'm already having to wait till this august to start driving lessons. When i discussed this with my doctor he said that he wouldn't recommend taking me off the medication until i'd been seizure free for 3 years, as if it simply developed because i was a teenager i might have outgrown it (my doctor said this happens quite often when epilepsy develops around my age). Personally, I've decided i'd rather wait for 3 years before stopping the medication than risk having a seizure now and losing my chance to drive/ have a driving license, as it will be more unlikely that i'll have another siezure. i'm also sitting exams and i think the epilepsy was brought on by stress in the firts place so that added to my decision as well. Sorry if i rambled! hope i helped in some way.