Hello

i was diagnosed with juevenile myoclonic epilepsy when I was 17. I do think that your daughter may be too young to have this type of epilepsy starts in adolescence.

However I post the message because with this type of epilepsy, before I started mediaction, my arms would jerk above my head uncontrollably - it would not last a long time. Sometimes I would then go onto to have a tonic-clonic seizure (grand mal) where my whole body would go stiff (tonic phase) and then my body would start to jerk (clonic phase). Then I would get up, walk round and talk - mainly crying for my my mum but I would never have any memory of this. About 15 mins later I would come a little more aware of my surroundings but have very bad headache, be very tired and be disorientated - wouldn't be able to work out the day, then I would just sleep for hours and hours.

Couldn't be sure if your daughter has epilepsy or not - just thought i'd tell you my story especially when I read that her arms have been jerking above her head like mine did - but as I say, drs have told me that this type of epilepsy that I have starts in adolescence. However, there are so many types of epilespy, maybe there is a similar type in younger childern.

I used to also used to have seizures in my sleep but I am unable to tell you what form they took - does your daughter ever complain of a sore tongue or have a swollen tongue in the morning and wake up very groggy? That was my sign of having had a seizure in my sleep.

Hope this may be some help.

I had epilepsy for 3 years before being diagnosed & had several eeg tests and all came back normal so I was told it must be anxiety. As I kept having 'black outs' I eventally had sleep deprived eeg which picked up this type of epilepsy. Apparently as tiredness is my trigger this is why it was never picked up on a normal eeg.

Actually I have found more info on this type of epilepsy which says it can start at age 8 - think it may be of interest to you:

juvenile myoclonic epilepsy can develop between 8 and 26 years of age, but occurs mainly between 12 and 16.
It is characterised by myoclonic episodes, or jerking motions, which mainly affect the upper limbs. Consciousness is not lost.
The myoclonic episodes tend to occur in runs on awakening, or following sleep deprivation, and may not be recognised. In 90 per cent of patients generalised seizures are associated with, and may follow, the myoclonic jerks. In 25 per cent of patients typical absence seizures (of adolescence) may also occur.
Clinical attacks of myoclonus are associated with polyspike-wave discharges on a normal eeg background. The gene for this syndrome is believed to lie on chromosome 6.
Photosensitivity is common in those with juvenile myoclonic epilepsy.
Most patients respond very well to the drug sodium valproate, but relapses occur if the drug is withdrawn.

My 16 year old had a major seizure when he had just turned 14 (we were standing and talking around 10 at night and he just went down). He broke 3 teeth and eventually we discovered he had a brain injury as a result.



First neurologist said probably would never happen again. Then I took him to a specialist that people fly to from all over the world. This doc looked at my sons mri and eeg and the first question was,
" did your son ever have night terrors or sleep walk?"

yes he did, no one ever thought it mattered before. He said this seizure pattern (seizures during sleep or fatigued) show themselves as night terrors and sleep walking in younger kids and as seizures when they are older. I would do meds early and avoid further brain injuries.



They tend to run in families, he told me, also. Last week my 11 year old had a major seizure during his sleep.



1. The part of the brain these seizures come from control also anxiety and ocd behaviors. My 11 year old has had so much senseless anxiety that just pops up out of nowhere (seizures) and he also had night terrors when he was younger.



2. That part of the brain also controls "language" functions. My younger son has a language processing disorder (including written language - reads very well, but large amounts don't "compute" and also he gets words mixed up-- he & she) my older son has severe dyslexia.



You should definitely pursue this. My boys had a friend, I still know the parents, who had a seizure and docs said would probably never have another one. He died in his sleep. One reason I pursued medical evaluations is the experience of seeing what they went through and I had a gut feeling that my sons was the same type as his. (it was)

3. Seizure activity increases during developmental periods, toddler, adolescence, puberty, etc., because of hormonal changes.



Have you gotten information yet?



You should put into writing that you would like your daughter to receive a full psycho-educational evaluation (letter to school) they will have 60 days to complete the testing after the formal request and you will have a better idea what her specific needs and issues are. Also, by law they must do it every three years, unless you say not to, and you will have a broader understanding of how your child's condition is impacting her ability to learn and thrive in a school environment. Some issues may not manifest themselves until 5th or 6th grade.



Good luck,
hope
ps I am a child advocate