Melatonin on prescription?

[handmademitlove]

Neurologist prescribed melatonin a few months ago to try and improve sleep for teen DD. Started on 2mg and worked up, tried both standard and modified release.

Fast release seems to get her to sleep quicker ( within a couple of hours) but slow release takes ages for her to get to sleep but she doesn't wake up so much. Either way she is still only getting around 5 hours sleep.

Neurologist is happy for us to experiment to see what works best - has anyone given both variants as half and half? How does that work with the full / empty stomach requirements?

Not sure where to go next as if this doesn't work he has suggested sleep clinic referral but she is autistic and not sure how that would work!

Lots of patients referred to sleep clinics are autistic. That wouldn’t prevent DD being seen.

DS1 takes 5mg of immediate release and 2mg of prolonged release. He also takes a small dose, 5mg, of temazepam. We were told not to worry too much about not taking it on an empty stomach. It would just result in it not working as fast. DS1 is tube fed, not having anything in his stomach 2hrs before and 2hrs after isn’t possible.

@StrivingForSleep that is helpful, thank you.

I think the sleep clinic concern is that she struggles a lot with sensory issues and I think any sleep study would not reflect her normal sleep - on holidays she barely sleeps at all. She also struggles to communicate so can't describe or explain how she is feeling.

It is helpful to know the empty stomach is not so essential. So I guess taking both with a snack is the way to go.

I know melatonin doesn't work for everyone but am struggling to work out if it is working at all - her sleep is so irregular and she can't even tell me when she goes to sleep and if she wakes up in the night - I have to check her smart watch and deduce from the readings!

Perhaps a sleep clinic would be helpful. Not sure what they do really?

DD takes a combination of slow and quick release. Doctor is happy for us to experiment with how much of each, as long as we stay below the maximum total mg they have prescribed. I didn't even know it had to be taken on an empty stomach tbh, not sure how we could do that at bedtime.

Not all patients seen in sleep clinics have a sleep study in a hospital. Some don’t have a sleep study at all or have one at home (which for some doesn't give the picture of a normal night but better than in hospital).

DS1 was seen by a specialist sleep clinic - not all sleep clinics are made equal. He had already had sleep studies for medical reasons, so didn’t have another. We completed sleep diaries, spoke in depth to HCPs, some bloods were ordered and we worked our way through trying different medications. DS had already tried several medications, but the sleep clinic enabled us to try more hardcore medication and come up with a plan for every night and a plan for bad nights. It hasn’t been a miracle cure. Nighttimes are difficult for many reasons, but it has helped.

Thank you both. Sleep has always been low - not an issue as such as she doesn't really care, but other medical issues mean that her consultants all think that more sleep would improve other things.

Just not sure there will be an easy fix and as she is now 16 she sits between paeds and adult services. Not sure which would be better?!

If DD is <16.5 and you can get a referral, I would push for a referral to somewhere like GOSH or Evelina’s sleep clinics. They will accept referrals for older teens in exceptional circumstances/it is an internal referral.