DS has asd, but they want him to have EEG.... Questions please??

[genieinabottle]

We have finally received B's dx report (only took over 12 weeks )

Part of the ASD team 's recommendations are for genetic testing for Fragile X and an EEG.
B has moments when he goes 'spacey' like. He becomes hard to reach, unresponsive for several short moments, never more than a few seconds (10-15 at the very max), it is very brief.
Usually when he is having moments like this, his general behaviour is a bit dreamy like for a while, and one sure sign is his face seems to relax, his mouth drops slightly and his tongue pusches out a little.

We have never worried too much as he doesn't jerk or go stiff, nor drools, doesn't cry, so nothing unusual other than he is clearly 'in his bubble'. We thought this was simply part of the autism.

So my questions ...
Do we have to along with the EEG? Is there a point to doing it in your opinion?

And what happens during an EEG? Is child awake? does it hurts?

I've seen pics before and child's head was covered in wires, looked scary .

Thank you.

I've had EEG's, they don't hurt, the wires are stuck on with some kind of gel not actually inserted, but (IME anyway) you are awake and have to keep reasonably still so as not to knock the wires off.

The spacey moments sound like they could be seizures (which come in all sorts of forms including absences) rather than "just" autism, the EEG might help to confirm that (or it might not help either way, especially if he doesn't have one of those moments while having EEG).

good luck.

I see. Thank you for the helpful info
If it is painless and he doesn't get too stressed than maybe will give it a shot.

DD1 has had 3 EEGs, she will have another in the next couple of months. Your DS will probably go to the big hospital in S, genie.

They are lovely. They will give B a toy to play with, and put his favourite video on.

They will gently roughen his skin with a cotton bud dipped in an abrasive gel - a bit like swarfega, but only a tiny amount.

Then, they will get each electrode, smear it with a white paste and press it onto specific points on his head. It sticks well. A tiny piece of gauze is pushed on to cover the paste after.

When they have done this with all the electrodes (around 24), they will use some netting material to make a little hat. If he won't wear the hat, they will just tie a bit of netting around the leads to keep them safely together.

He will continue to watch the video while they make the recording. They will ask him to blow a 'windmill' for a few seconds, and they may use some flashing lights, although they will ask your consent for this, and you can refuse.

Then they will take it all off. You will need to wash his hair that night.

Reports take 3-4 weeks usually.

Sometimes they show epilepsy, but you can have a clear EEG and still have epilepsy. Other times, they will show an uneven pattern that indicates a brain injury/malformation. My DD1's did. Basically, it showed epilepsy, but also uneven discharge, and they suggested that she needed an MRI.

DD1 didn't like the electrodes at all, but she coped, and once it was on, she was fine.

DS who is 6 had an EEG earlier this year. No pain at all and the technician who did his told him he would get to look like a special Dr Who character so he was instantly sold!

You are right about the wires and think they are annoying more than anything. The gel used to stick to them to their wee heads really gloopy so be prepared for needing a hair wash straight after.

DS was wide awake and in status epilpeticus (permanent state of seizure) and coped ok. They also monitored his heartbeat and muscles with other wires, and it was all filmed too.

If its possible that your DS is having seizures (and for some they are just dreamy like) its worth getting it checked just to be on the safe side. Oh and before I forget they also did testing for photosensitivity epilepsy which involved very fast flickering lights to see whether caused seizures.

Any other questions just shout.

now I feel cheated, I have never got to watch a video during one!

Here in France EEG is one of the standard tests given to kids with ASD, just to double check they aren't epileptic. DD had one and it was fine.

Thank you so much for replies.
I was quite worried as i just didn't have a clue about how they do it and what happens.
It doesn't seem too bad, not as scary as i imagined

Lougle, thanks for the extra info about the SG hospital.

We are waiting for our next appointment with community paed. now Cahms have DX we are being redirected to her to sort out all the different referals.

ds is very low functioning ASD with adhd and other co-morbids. At 2, when he was dx'd, he was offered an EEG but there was no way that he would have coped so we refused. Even at 9 he wouldn't sit and watch a video.

I do know other children that have had them and said how good the staff are ensuring the child is happy and entertained.

As you have some concerns with him being unresponsive then it is probably worth trying. ds had to have a hearing test as they just couldn't tell without full sedation if he could hear or not - I was worried but it really wasn't bad.

Hope it all goes ok, whatever your decision.

Starlight they do treat absence seizures DD1 is just working her way off of lamotrigine for absences (we think it might be responsible for her increased tremor and wobbly walking), and we have been told that once off of it, if she has any clear absences, I have to contact the Paed, and he will most likely start her on Keppra.

Absences get in the way of learning, and can be dangerous if someone is doing something hazardous when they strike (eg. carrying a kettle), also they can progress to other seizure types. You can also go into Status Epilepticus with absences, as other seizure types. So they tend to like to keep them at bay.

Well, they can, Star, in theory. But moreso, it is the massive learning loss that is a real problem for children. Imagine watching a film, and having the TV turn off, and on, and off and on - you'd soon lose the plot, wouldn't you?

Yes, will talk about it all in details when we see paed.
Will defo ask these questions re:treatment available,...

DS's moments are not a daily occurence. It happens maybe 2 or 3 times a week but we probably miss some as he isn't with us all of the time; but his old nursery teacher has mentioned them too, and ven wrote about him being 'spacey' in a report.

Like i said in OP, he gets quiet and dreamy like for quite a while, then we tend to notice he is very unresponsive for a few seconds, then he is more 'with it' but dreamy again for a while.
That is the pattern we have noticed when he is like this.

Anyway i'm rambling on now

Alfie had to have 2 of these, one normal and one sleep induced. I must admit he didn't cope very well with them, but he is very sensory. He has absences but they have always come back as inconclusive, so paed said after the sleep induced one, just to put it down to his condition (asd) as they can have overload absences I believe.

Alfie does exactly the same as you are describing and even school said they look like epileptic absences.

They have also suggested fragile X to us and paed believes he has a degree of this (not fully) but we have declined, as not sure what help this would be.