severe insomnia - does anyone have experience of this level of sleeplessness in a child?

[horizontilting]

I'm posting here to cast as wide a net as possible in case anyone has experience of this. I've previously posted on the SN boards but can't find anyone who has experienced this.

DS (age 15) sometimes doesn't sleep at all for 36-40plus hours. So this week for example he woke at 6am on Thursday morning, never went to sleep that night and finally went to sleep at 7pm on Friday night.

He is severely autistic, has Down Syndrome, is physically disabled, vision impaired and hearing impaired. He has sleep apnoea.

He uses an antihistamine and melatonin to get to sleep each night and can't get to sleep without the antihistamine on any night (hence why he stays awake all the following day after a night of no sleep until he can take it that evening).

It currently happens on about 5th night so he's missed a lot of school already this year.

Does anyone know of anyone who has severe insomnia like this? I'm looking for any leads - if it's connected to a neurological issue, the sleep apnoea (and overtiredness), ASD, Down Syndrome, anything.

Any opinions/suggestions/ speculation much appreciated.

Yes I know a few people with this theirs has been linked to ADHD.

Try the special needs board for more help.

Can be connected to all, I have severe insomnia and often sleep every other night, DD has ADHD and is the same. Is the tablet phennigan ? I was prescribed zopiclone and had the opposite reaction I felt like I was buzzing all night. Does your Ds have ADHD ? This sounds very odd but sometimes with ADHD things have the opposite effect, so the one thing that makes DD sleepy is caffeine, I thought this was rubbish till I asked dds doctor and it's a fact, red bull sends DD to sleep!

I have no advice or helpful suggestions. But I'm posting to send and because I'm wondering how on earth any of you are coping? Do you have much RL support?

Dd has asd and severe insomnia -occasionally getting into a nocturnal sleep pattern and sometimes going 48 hrs without sleep

She's been prescribed melatonin but won't take it so I've no idea of its effectiveness

I have a dd similar to this, she is 20 now, she first went through the night at ten. She has just got a train home today, she caught it at 6.30 this morning, having been up all night. She won't sleep until around 2 a.m. tomorrow morning, now. She has an ASC, ADHD and various other conditions linked to the Autistic Spectrum. This is quite common on those with Autistic Spectrum Conditions. We did find that the melatonin had a 'window'. If we gave it to her before 7.00 or after 8.30 pm. it did nothing. Otherwise it worked for a while, (ten until 3, 4 or 5 if we were lucky).

Thanks summer. I have posted there previously and got a few replies which helped a lot with regard to the use of melatonin and sleep in ASD but no-one was familiar with this level of sleeplessness.

I'm posting here in the hopes that amongst the bigger group of people that read AIBU there will be someone knows someone who has had a similar issue, which would be reassuring if nothing else.

ADHD is certainly something to consider though, DS would certainly meet the criteria for it so possibly there's a solution to follow up there. Thanks!

Maybe just try a small amount of caffeine and see if it has any effect.

x-posted. Thank you all so much for replying.

God, it's really reassuring to hear DS is not the only one - the (SN) psychiatrist we saw and any of the GPs hadn't encountered it to this extent. But also I'm really sorry Dawn and Emo that you have experience of this - its surreal and very hard. I'm noting that about the window with melatonin Dawn, thanks.

And also User44 - doubly hard when it's both you and your child that is v interesting about the caffeine! It's Alimemazine Tartrate (Vallergan) syrup he takes - phernergan didn't work much but another antihistamine did have the opposite effect as you describe! So certainly worth trying to ask the psychiatrist about the caffeine - she doesn't tend to suggest much so if I can find avenues to suggest to her it would help a lot.

Thank you too Julia - it's just me and DS, he's a lovely happy boy who loves school and school helps a lot for a break for me to sleep but if he doesn't sleep he's off school, it's a vicious circle we're currently caught in.

It really can't hurt to try a bit of caffeine - when it's 4am and he's clearly not going to sleep until the next night there's not much to lose!

We have a syrup for the melatonin Emo, in case that's any help at all. DS used to take it in a bit of juice as it seems to taste like honey. But I know there may be other reasons your dd is refusing

She says modern medicine is the reason the world is overpopulated and disease is all part of natural selection

She hasn't taken anything since she was 11 and she's 15 now

I know insomnia is very committed n among the asd kids I teach.

One thing though. I tried taking 10mg of melatonin and it made me totally wired and I couldn't sleep a wink. Could you see what happens if you stop it and keep the antihistamine?

Common not committed!! Although that too!

Ds is 21 he has ASD and his sleep has always been awful. He can cope on 2 hours in 24 and sometimes he doesn't bother with even two hours. We are fortunate in so far as mostly he entertains himself reasonably quietly in his room. I always sleep with a listening ear though.
We have never found a medication that makes any difference and some of the sedating ones have had him climbing the walls. Regardless as to whether he sleeps or not I have always made him get up and go to school/college because it at least maintains some sort of routine.
Do you have a safespace? It would at least give you peace of mind that he was safe during the night.

Yep my dd is 17 now, asd diagnosis and was medicated at 6 with melatonin. It often doesnt work. Goes to sleep at 5am after trying since 9pm or up 2 days then sleeps but not through so awake early hours.

I used to be so proud that my 10wk old baby girl would sleep through the night till she was around 2 and its been like this since. 15 years later and no closer to solving it.

Only light at the end of this tunnel is shes at an age since 13 really that im not too afraid when she is awake, if she hasnt woke me. (Except the pmt period when i hid the knives.)

for all going through this and

Now if she does sleep a bit i cant sleep after all these years and then when i think yep 5 nights in a row, we have cracked it, i sleep only to be woken up by her creeping around the house. She doesnt come in to me unless scared anymore but just having her up is enough.

Oh, Emo that sounds really difficult. So hard for you that she wouldn't even try it.

DS is definately committed to his insomnia, sazerashez, I'll grant him that! That's very good to know about the melatonin - it was added to the antihistamine when his wakeful periods became more extreme but when we went away for a few nights last year and I forgot to bring it (I thought we'd land up going home..) he slept well without it. I thought we'd just got lucky but I'm going to try leaving it out now - I'd never heard it could have the opposite effect before!

A safespace is exactly what we have, insan, it's helped so much (and a travel one which lets us go away sometimes, they're very good) but unluckily DS hits his eyes and ears when tired out so he still needs close supervision. That's why he can't go into school when he hasn't slept at all - if he's had a few hours he manages and I agree with you on trying to keep the routine of it wherever humanely possible. He is slowly decreasing the self-harm but of course sleeping better would help with that too. ..

It's very hard to relax, isn't it flirtygirl - I keep thinking we're at the end of this too on the nights he sleeps - like tonight :) I think whatever I've tried was the answer. Then it happens again..

Thanks v much to everyone for the replies, I'm going to try each thing suggested and I'm looking at ADHD too. He'd meet the criteria.

Sorry to read that you're all having such a time of it.

Probably a totally off-base suggestion, but have you had bloods done - Vit D, Calcium, Parathyroid ("PTH"), Magnesium? Too low or too high of any of those can cause major issues.

DS2 is 10 we have been through various types of melatonin, even when it works it only puts him to sleep for a two or three hours. We have now moved him downstairs in the original living room. He is just too loud, he non verbal but has a good pair of lungs. It's shit, the paediatrician just says it common. The only thing that has helped is that his respite has increased as they have even worse trouble than us.

Thank you MrsMozart, off-base suggestions are welcome! And I'll certainly try - we're due to have bloods done at the hospital next month so I'll check the list and ask the GP to add any of those that he hasn't already, any leads are great!

It is truly amazing Bluebolt how loud a nonverbal child can be...it's good you're getting respite. I hope they prioritise your DS based on how much you muse need a night's sleep. We've never been able to access it here yet but still working on it.

My good friend's son is ASD, has learning disabilities and had a complex organ transplant as a child. He's now 11, and five times a week he is up for the day at 2 or 3am. My friend and her husband take it in turns to get up and disaster manage as he wanders from room to room. He is on melatonin, as well as a sedative, but to no avail. My friend has an autoimmune condition, as well as a 4-year-old daughter, and I honestly don't know how she keeps going.

I hope that you're surrounded by friends who pitch in as best they can, and a supportive partner who plays a 50/50 role 💐

Also, I've had my own travails with insomnia, and my doctor said that the latest evidence re finding the most effective melatonin dose, is to go minuscule--think .5 or 1ml.

The paed has mentioned ADHD but they say it's hard to diagnose with severe learning difficulties but may try the meditation anyway to see if by calming him in the day will improve his sleep. The worst is when he does sleep and I end up lying awake thinking about how I should be sleeping.

Asd/adhd here and although they do sleep every night it's just a tiny bit

There's a heart medication that's used off licence as a fourth or fifth line treatment for adhd, clonapin or similar? Might be worth asking pead about it, or other Meds. Also the time release variant melation in might be worth trying on top of the intant release stuff

Having adhd myself I know I have to be asleep early or it just doesn't happen. My kids seem similar, if melatonin is given too late sleep doesn't happen until the early hours.

Disaster management is a very accurate phrase! Stopgap, would a safespace help your friend? It's what insan referred to upthread and it keeps someone contained. It might give them some more rest.

www.safespaces.co.uk/ They are like a fully contained room the person can't get out of. The large ones are very big and roomy and suitable even for adults.

I adopted DS when I met him while volunteering abroad (or he adopted me, to be more accurate, he just left me to do the 2 years of processes...) so there isn't a partner in the picture but I do have lovely friends who don't live near but do provide emotional support which means a lot. I suspect all the early trauma DS went through in the overseas institution had a lot to do with his sleep issues - he'd never established a sleep pattern, used to be very hypervigilant when he slept and woke to the slightest thing. Now he's much calmer and happier which is a joy to see so these sleep problems after years when it was better seem likely to be due to something else. I think!

This is really interesting about the melatonin - DS started on 3ml and has always had that. I'm going to search out that research on lower doses and ask the psychiatrist to reassess. Thank you.

I know, Bluebolt, that's so tricky as sometimes you can see your child would really be diagnosed if they had no other issues. I had to make a case for them to assess DS for autism as they've only fairly recently recognised that people with downs syndrome can have ASD - (and then they discover ASD are far more common amongst people with Downs than in the rest of the population). He's severely autistic but everything would have been attributed to the Downs etc if he hadn't been assessed, and he'd have been treated differently.

I found this when looking into ADHD last night, www.helpforadd.com/2013/june.htm about the newer diagnostic criteria and it has become much more possible for children with other issues to be diagnosed with ADHD (although I don't know if assessment tools have caught up with that to make the actual assessment possible - it's very hard to apply the attentional criteria but he the hyperactive-impulsive ones are easier to consider DS for.

Thank you, Demon, see that actually makes sense to me of what seems to happen here - if DS takes his meds earlier than usual they have seemed to work well, he goes to sleep and I think he'll wake as it's "too early" but he doesn't - I've generally thought that was a fluke but what you say about the window is matching what other posters say above. I'm going to try moving the melatonin earlier, (also try omitting it, try a tiny dose of it and record all the results). Anything that makes a bit of a difference would be something wouldn't it. Sorry you are experiencing this too and especially with more than one child.