The drugs don't work...

Strictly speaking, I should entitle this post "The hormones don't work...." but I'm not going to be too pedantic.

Why am I here, blogging at 7am? Once again, it's one of the joys of autism. Many people (both adults and children) with autism have sleep disturbance/difficulties. Countless exhausted mothers have dragged themselves to appointments with me, looked at me with eyes weighed down by chronic sleep deprivation and begged me to help their child sleep. Some wake up in the middle of the night, unable to fall back to sleep and proceed to ensure no one else in the household can get any more sleep. Some are unable to switch off and get to sleep, turning bedtime into an exhausting "game" involving parents putting them back to bed and the child boucing straight out again. As with many autistic behavioural patterns, bad habits become entrenched and it can be impossible to break the reliance on certain rituals (eg the light on, watching DVDs, jumping on the bed, or, for the parents, lots of caffeine!). James dares to be different - as with many of his autistic features, he is inconsistent. One night he will fall asleep at 8pm and we won't hear a peep out of him until 7am. We daren't sleep soundly, but enjoy the peace and quiet. The next night, he'll be up until after 10pm, much of it spent jumping around on his bed, pulling the covers off his bed and generally causing as much chaos as he can in hhis tiny box room. After a "late" night, he may sleep late with us having to wake him at 8am, but he often wakes in the small hours, screeching, jumping and making sure that if he's awake then so are we. Other nights he'll fall asleep at 8-9pm and we will lull ourselves into a false sense of security - tucked up in bed at 5am the grim reality of autism rears its ugly head once more. We lie there, hoping that a miracle will happen and he'll go back to sleep. The bed is warm and inviting and a sanctuary from the reality of what is happening in the next door bedroom. We dose fitfully, trying to ignore the call of the wild. But some things can't be ignored and we reluctantly rouse ourselves and start the day, exhausted.

In the late 70s, many children (not just those with autism) were given promethazine (phenergan), trimeprazine(vallergan) or another sedating antihistamine. The problem with these is that they are using a side effect (drowsiness) of the drug's main property and were never tested in children. Though in fairness, the majority of drugs I prescribe for children are not tested on children. Many families would complain of the "hangover" effect and children would become either dependent on the drugs or they'd need larger and larger doses as they became resistant to the drug. We'd switch around, the same would happen. So when melatonin was first introduced in the late 1990s, it was hailed as the solution to all ills. On paper it looks ideal - a naturally occurring hormone (now synthetically produced rather than from animal brains which carried the risk of viral transmission) that is an essential factor in the circadian rhythm and hence in sleep. Given 30 minutes before bedtime, it causes a natural drowsiness and aids falling asleep. There is evidence that people with ASD have lower levels of melatonin production than average, and that may explain some of the sleep disorders apparent in this population. At the moment, melatonin is only available on a "named patient" basis in this coutry. This means that it can be difficult to get hold of, many pharmacies don't stock it and if you get it from your consultant/hospital you have to make a trip up there to pick it up. In the US it is available at health food shops as the FDA classes it a "food supplement". So when a friend came over from the States recently, she brought some liquid melatonin for us to try.

Was this the miracle we'd been hoping for? A full night's sleep? Uninterrupted? No bouncing around? No bed clothes ripped to shreds in the morning? Getting a dose into James wasn't as hard as we'd imagined - mixed into yoghurt or a fruit smoothie it was completely disguised and he took a full 2mg dose. We bathed him and put him to bed. 15 minutes later we were in shock - he was fast asleep. It had WORKED!!!! We had a wonderful evening, chatting and watching TV (the first time in months we had sat down together to watch TV). We fell asleep earlier than usual ourselves, we were far more relaxed than usual. At 4am the world came crashing down. James woke up but not his usual quiet squeaking and giggling. This was full on, destructive jumping, ripping, screeching, yelling. Often if he's awake before 5am, he'll fall asleep within an hour. No such luck this time - we tried all our usual tricks. We brought him in our bed (he just pinched me and clambered all over daddy), we gave him water (he chucked it back at us, literally), we offered him some toast (he gave a vehement "NO!") and eventually we just left him to it. He didn't stop until we took him down for breakfast nearly 4 hours later. Needless to say, we didn't get back to sleep and decided to avoid the melatonin for a while! There are some slow release preparations available, and I will try to get hold of some of that, but meanwhile we're trying to find the optimum dose for James. We thought we'd finally hit the jackpot a couple of nights ago, but with a 5am start today I think we're going to have to reconsider! Wish me luck (and a good night's sleep tonight....)