We don’t get much sleep, says Jo Dale, mum of 10-year-old
Sam, who has TSC.

It’s variable. Sometimes Sam will sleep for two or three
hours at a stretch and then be up for the rest of the night. Other times his
sleep will be more broken than that. But most days he will wake and be up then
for the day any time between 3am and 5am.

Sometimes when he comes home from school he is so exhausted
that he is asleep by 4.30pm and he needs it. There is no keeping him awake. And
if he has had seizures during the day then he will often sleep at school, and, then
again when he comes home from school. There’s no point in trying to keep him
awake so he will sleep better later because he is so exhausted by the seizures
that he has to sleep there and then.

If he has been seizure-free during the day he will settle
down to try to go to sleep around 10pm but if he has seizures in the night then
he will wake.

There is no real pattern.

Not sleeping a lot doesn’t seem to affect Sam too much,
although, of course, he does get tired. Once he stayed awake for 48 hours and
the school told me that they could not see any difference in his behaviour,
although I made sure I told them what had happened for Sam’s benefit.

Sam had his first seizure at 4 months old and as a younger
child would often stay up all night. Since we started him on the ketogenic diet
that has helped him a lot and these have largely disappeared, although I have
to say that they are starting to creep back in again.

How does lack of sleep feel for Sam? I’m pretty sure that he
doesn’t feel anywhere near as bad as I do!

He has enough awareness of his condition to know that he
doesn’t like it, but not enough skills to be able to talk through how he feels.
So instead he will self-harm, usually banging his head against things.

I sleep with Sam on a big mattress on his bedroom floor in
his safe space – he can’t sleep on his own. The safe space is like a giant
tent, a sort of cube. It helps Sam to feel safer, and if he gets distressed and tries to bang
his head against the walls it means he is hitting the material of the safe
space, and not the actual walls of his room. So it helps to stop him from
hurting himself.

He can’t go to sleep on his own either so I get into his
safe space with him and stay with him until he goes to sleep. Once he drops
off, if I then try to leave he will often wake up! So I sit there in the safe
space in the dark with my iPad and work on the TSC Mums and Dads Facebook group
– it helps me to cope as it’s something positive.

Sam’s sleeplessness has had a huge impact on all of us. We
are in survival mode really.

In the past year Sam has gone to respite care for one night
every week – Thursdays. This has been a complete life-saver and enables us to
catch up a bit, and, I think that without it we would be very close to not
being able to have Sam at home with us any more.

My advice to other parents out there dealing with
TSC-related sleep issues is:

Don’t assume that sleeplessness is a result of TSC. There
could be many reasons behind it. Talk to your GP and everyone involved in the
care of your child. Leave no stone unturned.

Get a social worker who will work hard to get respite care
for you and your child. Without respite care we would now be very close to now
being able to have Sam live at home with us still. Much as we adore him I don’t
think we would be able to cope without one night’s respite care at least.

Do all the sleep courses. They’ve not worked for us, but I
know others for whom they have worked.

Try melatonin. It hasn’t worked for Sam, but again, for
others it can and does work.

Try the ketogenic diet. This has worked for Sam.

Try to look after yourself. I cope by spending time­­­­ with
friends when I can, and, doing things for myself when Sam is at school or in
respite care.