Here are some suggested organisations that offer expert advice on SN.
sleep deprivation/natural EEG - instructions seem impossible-help!(10 Posts)
Ds (3.7) is booked in for a sleep deprivation/natural EEG the week after next. The instructions seem almost impossible to follow :
No drugs are used I assume this means melatonin, which ds uses normally to go to sleep in the evening
Night before EEG keep ds up 4 hours later than normal, then wake him 4 hours earlier - he must not sleep on the journey to the hospital. The appointment is at 11.30 ds normally sleeps after melatonin at about 7.30 then wakes between 4 and 5 - following these instructions would mean him going to sleep at 11.30 pm and being woken up between 12 and 1 am. Then trying to keep him awake until 11.30 - including on a 30 minute bus/car journey!
After the EEG it is important that ds sleeps for 2-3 hours, then gets up, but goes to bed early that day - huh!
I am at a loss as to how we are going to do any of the above. Sometimes, even if ds has been up since 5am he will be unable to get to sleep for a whole night, he will be sweaty and overtired and manic, but sleep doesn't come (this will happen especially if he is in a strange envoironment). Other times he has fallen asleep so suddenly that still has food in his mouth or is playing at a table at preschool - trying to wake him or keep him awake when he is like this is impossible.
Ds had an EEG a year and a half ago, which was also a 1 hour asleep test, but he had melatonin for this. The EEG showed nothing, but he has had different sorts of seizure like activity since - waking choking, losing tone down one side, absences, eyelid myoclonia with absences, and an episode at Christmas where he fell down, became very floppy and unresponsive seemingly as a reaction to getting very cold. I keep a diary of all these things and have filmed the eyelid movements. There can be quite a gap between episodes, and the myoclonia seems to go in flurries (he is doing it a lot at the moment, but it might lessen next week). I had assumed given this, that his paed would refer for a 24 hour EEG as there would be more chance of catching something.
Any ideas on any of the panicky ramblings above would be great - thankyou!
we had a sleep deprivation eeg when Dd was around the same age. we woke her up at 1 and kept her entertained with the ipad, went even out to the park. Dd had sweets as well so this seemed to help as well. DP and I took turns to keep her awake.
and make sure somebody is sittibg in the car on the way to hospitsl next to DS . Dd really wanted to sleep once we were in the car and it was quiet an effort to prevent her from falling asleep.
I was hoping they had maybe written the instructions wrong!
So you woke her at 1 am, but when had she gone to sleep before, because the only way I can understand it is ds getting 30 mins-an hour sleep, and then having to be kept awake for another 10 hours until the appointment - by which time he will be such a sweaty wreck (as will I!) there is no way we will even get him to hospital let alone glue stuff to his head!
Can I ask why they did this particular EEG rather than one with melatonin or a 24 hour one. I am not sure what the purpose of a 'natural' one is?
they wanted to rule out landau kleffner syndrome (which can cause speech and language issues). fir some reason, the eeg for this needs to be a sleep deorivation eeg.
Dd was soo tired once we arrived at the hospital so that the glue thingy was no issue at all (she is usually tactile very defensive)
Thanks chocnomore, I'll keep my fingers crossed that ds stays awake and falls asleep when required!
If he can fall asleep without melatonin, I will be amazed!
Ds did the melatonin one, but ours also involved ridiculous get up and go to bed routines.
The only thing I can say to help is "just do it". Book babysitters/parents/siblings for after or send other children on a "sleepover". Have food ready (which we all know will make you feel sick by the time your 15+ hours into this nonsense), have taxis or lifts organised.....grim.
If he gets really sleepy take his socks off and rub his feet with a towel/something knobbly.
I think LK was mentioned for us too, though frankly it's an obvious google for language/possible seizure.
hazey I think the point is not just that he is sleepy, but also that his system is stressed/on edge and sleep deprivation is the least horrid way of doing that.
Yes, DD1 had one of those. Wake up and lots of cartoons and music.
They are really good at getting them relaxed and sleeping when you get there. You'd be amazed.
I spoke to the eeg lady today and she said that this eeg is exactly the same as the last one he had, except she had no permssion to use melatonin this time, which she said was unusual as they nearly always use melatonin. And ds uses melatonin anyway
I also asked her about the 24 hour eeg and she said that that would probably be better, remembering his last one, but the system for 24hr eegs were not great at this hospital, and the waiting list is months long, so we would need to be referred to John Radcliffe.
I've emailed ds's paed, and spoken to his (very stroppy) secretary, so just waiting for a reply.
Thankyou for the tips zzzzz, we have my mum staying to have the dds, and have sorted lifts.
Fanjo - I don't have much faith in the ability to get him to sleep - the eeg room is a grim tiny grey room, and the only person involved is a very straightfaced older lady who is not really a people person!
I don't mind doing the crazy sleep thing, but I just want to make sure we are getting the right sort of eeg for our concerns, it all just seems a bit slapdash.
Our EEG room sounds more like hazeys. The 24hr one is a much better idea I think. Dd3 had one (though they are REALLY stuck on so you live with strange crunchy patches until you can dissolve them all with nail varnish remover
cut them out )
YOU can give him melatonin surely?
Ds1s was hideous, he fell asleep on the floor in the middle of a corridor after we had failed to get an EEG.
Join the discussion
Already registered? Log in with:
Please login first.