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Autism and Epilepsy

5 replies

willowthecat · 24/08/2021 20:18

Hi !

I used to post on Special Needs Children many years ago when my (severely)autistic son was around 4 years old. He is now 17 years old and has developed Epilepsy over the last 12 months - Grand Mal/Tonic Clonic seizures which appear to be focal onset . Does anyone else have experience of this and if so, did you ever discover an underlying cause for the Autism/Epilepsy ? As they are likely to be linked. Did your child have an MRI ?

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willowthecat · 02/09/2021 11:45

Thanks - that's very interesting reading. I am very struck by the difference in approach to Autism and Epilepsy . Epilepsy is rightly seen as a medical condition , we see a hospital consultant and get regular medication advice whereas the severe autism was not really looked at all in medical terms, we had to pursue the issue of medication ourselves . We think there was some pre seizure activity last year but it was largely written off as 'just autism' ....

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Intercity225 · 02/09/2021 12:17

To answer your other question, DD did not have autism but she did have a language disorder, dyslexia and dyspraxia, before she developed epilepsy at 12.

After the first tonic clonic and EEG, and the diagnosis was made - they did refer her for a MRI scan. The MRI scans at our local hospital did not apparently show anything abnormal, however she had a MRI scan at GOSH when 16 (they had a 3T MRI scanner, one of the best in the country at the time), which did show a congenital malformation in the brain - which caused the learning difficulties and epilepsy. They said it had been there all along on the earlier MRI scans. It's called a focal cortical dysplasia.

I see the Epilepsy Foundation does refer to them in that article, as being a possible cause for epilepsy and autism.

GOSH firmly believe that all children with epilepsy should be assessed for brain surgery (to cure the epilepsy) - the first step would be a MRI scan. If I were you, I would press for a MRI scan of DS. If he couldn't keep still or tolerate the noise, they use sedation on children with SEN if necessary.

Given his age, he is in transition between paediatrics and adult services, The Epilepsy Society has probably what is one of the top diagnostic centres at its HQ at Chalfont St Peters, run jointly with the National Neurology and Neurosurgery Hospital (aka Queen Sq). They also had a 3T MRI scanner - there might be a new generation of them by now, as DD last had one there in 2012.

willowthecat · 02/09/2021 12:36

Thanks - I am thinking there may be underlying brain injury that caused 'Autism' and is now causing seizures but as yet there is nothing specific known. I am hoping we get get an MRI at some point, he has severe learning difficulties and can't co operate with medical investigations so would need a general anaesthetic rather than just sedation so possibly that is a delaying factor. We have another appointment in October so I'm really hoping for some progress then. Yes he will move to adult services soon so again we need information on the transition.

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Intercity225 · 02/09/2021 14:39

Yes, GOSH does MRI scans with a general anaesthetic on children.

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