Alternatives/ additions to melatonin

[carriebradshawwithlessshoes]

DS has what I would describe as severe sleep issues. Melatonin is not enough and taking other meds (currently adhd meds) more than likely make his issues worse. Same for probiotics and basically anything!

He used alimemazine for a while but it left him terribly groggy in the morning. I wondered if anyone uses anything else and if so, does it leave DC groggy/ too lethargic?

Also curious if stuff that is supppsed to work has the opppsote effect or is this just DS? Last night I excitedly tried a magnesium supplement. DS finally stopped bouncing around at 3am. When I share a room with him (on holidays) he is literally never still in bed. Tossing, turning, sitting up, getting up, getting back in bed etc. That is with full on meds!

curious about others experiences. I don’t think this emanates from stress or anxiety it is almost like he just cannot shut down and go into a deep sleep. Or if he does it lasts only a couple of hours.

We found the swap to slow release melatonin did the trick for DD.

DS has aways taken slow release melatonin

That’s an absolute bugger then as I don’t really have any other suggestions. I hope someone comes along soon who is able to help

Yes, some DC react differently to what is typical. For example, chlorphenamine can make DC drowsy, but it makes some DC hyper.

Alimemazine does leave some drowsy the morning after with a hangover effect.

It sounds like DS needs a referral to a sleep clinic. There are other things DS could try from other antihistamines, such as promethazine to more hardcore drugs such as clonidine, clonazepam and temazepam.

DS1 has tried a lot of drugs to help with sleep. He currently takes immediate release melatonin, prolonged release melatonin and temazepam. Some of his other medication also make him slightly drowsy. He also has lorazepam for crises.

@ChasingMoreSleep im interested (always) in refs to sleep clinics. Do they involve meds or are they more common sense/ good sleep hygiene? With DS I feel the latter I know, the former is where we need help. How does this differ from medication a paediatrician would know about? How did your DS settle on his successful meds for sleep? I know from conversations with DSs paediatrician she had limited tools, she says, in the box. I

What is a typical night for DS? For us DS is never asleep before 11 otherwise he would be up in the night. So meds at 10ish. There’s a 60pc chance he will sleep all night but if he is up it can be for hours. How does a typical night look for you? DSs guanfacine is supposed to encourage sleep so we were really celebrating but it seems to be the opposite frustratingly!

Both. Before medication is prescribed, the service will usually want to be satisfied good sleep hygiene practices are in place as far as the child’s disability allows. For some, they can tick this off from the referral or first appointment. For others, this can take a little longer. They may also want tests to rule out physical causes before prescribing, especially for some of the more hardcore medication.

HCPs at sleep clinics specialise in sleep difficulties so they will be more focused and experienced at prescribing medication for sleep difficulties that a general paed may think is beyond their remit/experience. There will be exceptions, but on the whole, this applies. Some sleep clinics are also tertiary or quaternary services. Whereas general paeds will be in secondary care - although some are more specialist.

DS1 doesn’t have a typical night. That is part of the problem for him. We have a structured evening routine and DS is in bed between 8.30-9 depending on how co-operative DS1 has been with bath, physio and medication. Between 8-8.30 if DS1 is compliant - that’s rare. (Seems early, but going later doesn’t help. DS needs more sleep than average.) That doesn’t mean he sleeps then, though. Some nights he settles more easily than others. He wakes several times in the night. Every night. He never sleeps through. Sometimes he settles back down more easily than other times. Two nights a week, we have overnight carers. He has an afternoon nap every day; that is the best sleep he has.

Thank you, that is really helpful. I think I may have been a bit dismissive of sleep clinics, I will have a good and better look. Can we self refer? Thanks again 🙂

Who can refer will depend on the service. The less specialist ones sometimes accept self referrals, but the more specialist ones don’t.

To clarify my pp, I should have written most general paeds will be in secondary care - although some are more specialist. They aren’t all secondary care.

Thank you. If DS1 wakes can he self settle or does he come for you? I swear one day I will have a heart attack from DS standing over me, sometimes now I feel I see and hear things that aren’t going on I am so paranoid!! I am always talking to DS in the night, often he’s not even there….

Do you manage ok with such interrupted sleep, do you not feel any med can get him through the whole night? It’s very hard. I will def look at sleep clinics. I feel the adhd med is not helping this aspect but benefitting others.

DS1 cannot self settle at all. Never has been able to.

DS1 has a specialist bed, and we have cameras in his bedroom. Often DH or I end up in DS1’s room or him in our room during the night, anyway. And we have the carers 2 nights a week.

Do you manage ok with such interrupted sleep

See my current username! Although DS1 isn’t the sole cause of my lack of sleep, he certainly makes a significant contribution.

The balance with DS1 is the medication and dosage that could enable him to sleep through the night would depress his respiratory function too much and his medical conditions affect his respiratory system as it is.

Have you tried other ADHD medication? I feel the answer to this might be yes? While many experience tiredness with guanfacine, in some it can cause insomnia or disrupt sleep cycles/patterns. Have you played about with different timings of meds?

Last sentence v interesting and what we are currently discussing! No we haven’t played with timings. He is taking it at bedtime. What you say resonates but yet CAMHS say that guanfacine causes drowsiness and cannot disrupt sleep. So it’s interesting that there is any thought that it may do as they are making me feel like I’m going mad?

we have had a 3 year ish break since the last adhd meds. We have tried strattera which was supposed to be a soft option but caused all night wakening. Before that we tried medikinet. A long time ago but from recollection made him very zombie like and so we stopped. I do wonder if guanfacine in the morning may be better? It’s last chance for him I think on adhd medications.

Do the other DSs sleep ok @ChasingMoreSleep ??

DS2 and I take atomoxetine. I’m pretty sure when I was reading about ADHD medication before DS2 started meds that I read guanfacine causes insomnia or disrupts sleep cycles/patterns in a minority. IIRC there were research studies supporting this. Some take it in the morning, so it is worth trying.

DS2 sleeps OK as long as he gets enough exercise during the day.

DS3 takes prolonged release melatonin. As long as he also gets enough exercise during the day, it works well.

That’s interesting re atomoxetine. Did you both settle on it quickly with no issues? I know it can take a while. I do recall having several full nights awake with it and then gave up. Whether that was too soon who knows.

Ps CAMHS meeting next week so will discuss again the guanfacine.

It hasn't affected our sleep. Equally, it hasn’t helped either of us as much as I had hoped.

Just wanted to mention that we had more success with a much smaller dose of melatonin than was prescribed. I had read somewhere years ago that this could be the case for certain people with autism/adhd and where we found that the 5ml prescribed was too much, around 1ml works well.

Thank you!