Sleep schedules and dosing

[Guest guest]

Well, I am about to try a 3 day course of DMSA and use it as a trial

for a urine challenge (for my interest as much as anybody else's).

I've watched the heat over schedules and am not sure which way I will

go yet. But I thought some elaboration on sleep issues might help the

different 'sides' understand.

Sleep is a critical issue for some autistics, and the impact on them

and their families is really hard to describe and almost as hard for

those not involved to understand. Some kids will sleep 5 hours (some

considerably less) in the 24, and maybe 2 or 3 of those hours will

overlap with when you want to sleep. I would say my kid had only

moderate sleep problems as these things go, but we had 2 years of him

up screaming, shrieking, flapping, banging (his head and other

things), and generally acting like some feral thing we could barely

recognize as our son for between 2 and 5 hours most nights of the

week. It started when he very suddenly regressed into autism and went

on until we did the diet thing and generally started working on the

gut theory in our management. There then was about a 6 month phase

where his sleep was very fragile - if anything disturbed him any

night (a bowel movement, a thunderclap, ...) it would be a couple

weeks before he returned to his present roughly 8 hours continuous

sleep in 24.

When you live that sleep deprived, everything is off. Day to day

functioning is like wading through molasses, driving is a constant

battle to stay awake, you catch every bug going round because your

whole system is suppressed. You do things like fall asleep in the

parking lot while waiting for your child's class to end and then

getting *** from the school for not being right on time. You can't do

all the other things that you need to do for your child or anybody

else because you are too exhausted to function. And if you doze off

at all at home some kind of disaster will inevitably follow because

you can't then watch your child.

Now things are much better. If we do not let him nap we do well with

sleep. But if he naps at all on one day, even for 5 minutes while

being carried in the car, then we may face a week getting him back on

his own schedule with him fighting to take naps and then fighting bed

and then waking at night. It's never as bad as it was originally, but

even now it is enough to throw us all off in functioning for several

days. Back then I would never have had the enegy even to consider

chelation. But if we deliberately wake him at night for three nights

he will probably follow that schedule for three weeks. And if he is

woken when he wants to sleep the problem behaviors resurface and it

isn't a matter of a few minutes of being awake

So if you have a child with sleep problems and have managed to

finally establish something bearable you are *very* reluctant to

disrupt it because you know how tenuous the new sleep pattern is and

what you will go through if it is disrupted. For many it is worth the

risk of higher side effects with spacing 8 hours at night, they can

shift if needed but if their child will do well on 8 it's worth a try.

As I say I consider my son's problems to have been on the mild to

moderate side compared with what some families face. And we live in

the country and so had none of the additional fears and problems

apartment dwellers face in such situations. Often they have extra

stress when their child's loud sleep problems lead to complaints from

neighbours, problems with landlords, and at times visits from police

and social services with accusations of abuse / neglect.

For us it's been almost a year of improved sleep and I only now feel

that I am really getting my own balance back. And I was no novice

when it came to sleep deprivation - as a graduate student I went

months running 24 hour assays every second day, meaning I'd sleep

only one night in two. That was a piece of cake compared with ther

disruption caused by my son's " moderate " autistic sleep disruption,

and my fear of returning to what we left is real enough to make not

waking him for overnight dosing very much worth consideration.

Sorry for the long message but I thought this might be a point worth

making.

jan