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Benign Rolandic Epilepsy

(4 Posts)
BlueMoonRoses Tue 15-Dec-15 14:46:00

My DS aged 10 had an EEG last week. Done as a "just in case" measure following what seemed to be an absence seizure at school. Preliminary diagnosis given today is Benign Rolandic Epilepsy. He also has abnormal TS4. We'll be going to an endocrinologist to investigate that and also follow ups for the epilepsy diagnosis. In the meantime, can anyone tell me more about it from their experience? Any advice? I'm a bit shocked at the moment and don't know where to start..

Willdoitinaminute Sat 19-Dec-15 22:26:44

Ds11 was diagnosed with BR epilepsy after a very frightening tonic/clonic seizure when he was 8. Although he has had no further seizures ( that we are aware of) we noticed subtle behavioural changes. He has now been discharged and the neurologist feels he has grown out of the condition.
The seizures tend to happen just after falling asleep or on waking.
The behavioural changes were more like tics or quirkiness. Very difficult to explain and describe. He just wasn't quite the same. I remember him describing seeing funny lights one morning on the school run and voices in his head (this was before he was diagnosed) and wondered whether he had been experiencing abnormal brainwaves for some time before we had the diagnosis. He also started to struggle socially but again this seems to be improving.
He is pretty much back to normal now, still quirky but his friends are all quirky anyway. He still struggles a little with getting school work finished which they think is due to the slight processing problems the epilepsy causes. Fortunately he is very able so this has not caused any real problems at school.
It is very easy to be overprotective. School were brilliant and we had a meeting with them soon after diagnosis. Residential trips are frightening but staff were all aware of the problem and apart from not being allowed on top bunk beds he never needed to be excluded from activities.
I am careful to let other parents know when he does sleepovers but all have been happy to have him.
We were keen to avoid medication since the side effects can be a problem. But he was not having regular seizures so this was an easy decision to make. Also as a HCP I was ok about dealing with seizures.
Most children with this type of epilepsy grow out of it before the onset of puberty.

SoYouBetterRun Sun 27-Dec-15 10:31:46

Hi there, thanks for replying Willdoitinaminute. I've had to re-register completely - forgot all my passwords, dur!

Now we've had the provisional diagnsosis, we're getting other stuff done - keeping a diaryof unusual events, behaviours, stomach pain etc and he's seeing an educational psych to get some help with what are clearly processing issues (maths, auditory processing...?). He is super bright but has never achieved what we know he should able to, especially in maths - real problems with basic arithmetic functions but can talk about quantum physics. He is very quirky, always has been. This was picked up at school in the UK as being temperamental (not disruptive or anything, just very "sensitive" and hard work). Now he's at a fab school in the middle east and we feel much more supported. We always thought he was a bit of a drama queen - being quirky and all. We feel absolutely rotten about it. He, on the other hand, seems quite pleased to have a diagnosis of something "normal" or physical wrong with his brain - he was clearly worried he was "mad" - he mentioned voices before too. Poor soul. I'm glad it's something he will grow out of and that it's been "caught" so we can support him properly - I can see how easy it would have been to go down the path that would have led to real behavioural problems and isolation.

Willdoitinaminute Tue 29-Dec-15 18:00:10

That's great news. I remember feeling relief when the processing problems were explained to us. DS is also very bright and a little off the wall sometimes. The processing problems do seem to have improved over the last couple of years. He performs well in exams probably because there is no auditory and little visual distraction. He does less well during normal class activities though.
DS spends time on the Xbox and his iPad playing games. I think this has probably helped with processing although I'm sure some would disagree. He has certainly spent enough time on them over Christmas. The weather has been awful with little opportunity to play outside.
Interesting re the stomach pain, DS has suffered with intermittent abdominal pains from an early age. They have never been bad enough to seek medical attention. Again they do seem to be getting less frequent. We always put them down to the massive amount of sport he does or possibly to food intolerance.
I hope that your DS is able to stay drug free. Here they advise against medication if you are ok handling the seizures. They really only medicate if the parents don't like to see child having seizures or if they are interfering with everyday life.
Good luck and Happy New Year!

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