Epilepsy and Asd/LD

[hoodiemassive]

Ds is 15 with Asd, LD and goes to an sld school.

Yesterday his teacher said he had two 'episodes' where he was still and quiet and then very disoriented, confused and tired.

We are wondering about epilepsy? His older brother was diagnosed with a form of childhood epilepsy as a young child but has since grown out of it. He was easy to test via an eeg, whereas ds 15 is very resistant to anything medical so we have been told to keep a diary which I'm happy to do.

Anyone else been in a similar situation (making diagnosis harder) with their child? Any tips/advice?

I would speak to the GP and request a referral.

If it happens again, try to video it. That goes against your instincts but can help.

Hadn't thought about trying to film it, thanks.

I am starting a diary and asking school to write down anything they see.

My main worry is bath time since he is too old for a chaperone. Fortunately he doesn't bathe regularly (never considered that a blessing before ).

Would DS shower instead of bathe? And would he leave the door unlocked? Some people sit outside the bathroom or in a nearby room and get DC to talk to them whilst in the bath.

Although if DS needs support or closer supervision, don’t rule it out just because of his age. Two of my teen DC still need help.

He is very private but we could sit outside to verbally check in. I wish he would let me help...

Doesn't like the feeling of showering so that's out too.

I just don't know that much about absence seizures and how dangerous they are in certain circumstances.

Thanks for your suggestions!

Doesn't like the feeling of showering so that's out too.

Do you have my son? DS1 acts like he is being tortured. He says the water hitting skin is like being “stabbed by a gazillion needles”.

Ds has absense seizures. He was diagnosed purely off videos as we couldn't get an eeg due to his needs. Definitely video them and try and get his attention in the videos if you can.

Thanks for your post @normanprice62

I need to be quick to film them - I kinda get rooted to the spot and totally forget until they pass since they are probably 5-10 seconds long.

Ds describes them as tapping out then feeling confused. Schools description of what they observed fits in with that too.

I know this post is a bit old OP, but can I ask how old your older son was when he was diagnosed with epilepsy and what age he grew out of it? Tia x

This is an old thread, so it may be DC has had no more episodes and the issue has resolved?

If not - DD1 has seizures particularly around baths/showers. We think it’s the change of temperature, particularly on getting out, when it tends to feel cold.

Due to her sensory issues, she only has her bath lukewarm; but those aside, if the bath were quite hot, getting hot definitely causes her seizures!

If DC is still having episodes, if he has showers, I would suggest a shower chair. Bathrooms tend to have hard surfaces, which cause injuries if they fall, during a seizure.

DD1 likes baths, so we used to sit outside on the landing and talk to her. Now, she’s got used to being supervised; she accepts us, sitting in the bathroom with her.

DD1 started off with absences. I never saw one, as they happened at school. I sought a referral to the paediatrician. He got her to blow on a paper windmill and she had 4 absences. He referred her for an EEG. During the EEG, they flashed lights at her - iirc, only 5% of people have photosensitive epilepsy.

So, even if you can’t video one, I’d still ask to be referred, because consultants can get around that.