How can i help him sleep

[whoamiiam]

This is only the second time I've posted in the SN area last time recieved some really useful advice re ds behaviour which have followed up with really great success. So thanks to those who responded before!

My question is re ds very early waking. Realise this is small issue compared to alot of things people are contending with but thought someone out there may have experienced this.

Ds has epilepsy and moderate developmental delay. He has a combination of absence "type" seizures but some are quite prolonged and involve quite complex actions/movements and sounds. Though some days he just has lots of staring spell type and none of the second. it seemingly very variable and random.

He has just had an MRI which has come back slightly abnormal (small areas of scarring) and we're see the consultant this week to discuss/change meds and ds is having a 24hr EEG (if he'll keep it on! ).

Ds has always been a poor sleeper and very early waker and until recently woke at least 2-3 times in the night requiring a great deal of reassurance to go back to sleep sometimes remaining awake for hours. I've been told this was probably due to seizures in his sleep.

But he is now sleeping much more soundly through the night, we can not get beyond 5.30 in the morning and often we go for weeks where hes up at 4.30, like this week. Have tried literally everything i know to put him back to bed and this has been going on since a baby. He seems happy upon waking, he stays in his bedroom til 5.45-6 but I am literally ouside his door (very small house) to listen to ensure hes safe.

The reason I'm asking about this here not in the sleep section is that my concern is for him and affect on his epilepsy. He is clearly tired and this has a profound affect on his seizures and makes them so much worse. Sometimes by lunchtime if he has preschool in morning he is just drifting in and out of seizures and will fall asleep.

I don't know if I am best letting him nap, I feel so awful if i dont as hes so tired and often i let him have short sleep and wake again after 20-30mins. He is shattered by bedtime at 7 and usually fast asleep by 7.15-20. He used to have longer nap and latter bedtime but recently changed this to see if it helped but nothing changes!

Any experience of this out there or advice re napping?

Thank you sorry long trying to give picture best picture!

I have epilepsy myself. Let him nap. Even a 'small' amount of seizure activity can make me tired - but it's not a 'normal' tired.

The early waking could also partly be med times. I constantly have to tinker with the times of my meds to sort out my sleep.

Currently I'm having issues getting UP in the morning, an tired to the point of crashing and sleeping through ANYTHING in the early evening, but am awake till the small hours.

Honestly, let him nap. If he's having absences, they can be just as tiring (in that bone-crushing, tired through your brain, where every cell in your body is tired individually, epilepsy way, quite unlike any other sort of tiredness), as 'bigger' seizures.

It may be an idea to fiddle with the times you give him his meds slightly too - I've found even a 30 minute change can have a profound effect on when I fall asleep and when I wake up!

HTH.

Thanks Merry thats very useful to hear how tiring it can be from someone who can tell me! He looks exhausted sometimes and the seizures are so frequent even though they're small they do have big impact on many things. So think naps are not whats making him wake early so will let him nap!

Then this morning though been up since 4.30am and has bundles of energy .

Not sure how much can change the med times as currently has it within an hour of getting up in morn and then in the hour before going to bed at night. Maybe could give it literally just before sleep maybe?

Thanks for reply!

Depends really. I am on Gabapentin, and I find I need to take it 1.5-2hrs before I go to bed, but within around 30 mins of getting up! I'm now taking a lunchtime dose too, and that's the one that's messing up my sleep pattern, for me at least.