Anybody else with a teenager with delayed sleep disorder?

[Somewhereovertheroad]

Dd2 (13) has delayed sleep disorder. Her sleep routine is completely messed up. It's ruining family life. She is really grumpy and irritated most of the time and she can't do her sports etc

I really need help and advice

Don't know how I missed the last few posts on here.

DD seems to be going through a slightly better sleep period, which is good because there seems to be a much bigger waiting list than we were told for treatment... I think it is going to be months before her sleep will be measured, let alone start treatment.

I think the treatment will be trying to shift her sleep with the aid of light cues, maybe melatonin as well, under the support of a 'sleep practitioner', whatever that is.

The good thing is that she is managing to get herself up most mornings at the moment. I think the holidays are always the worst, as she doesn't have to get up, so spends way too much time in bed which seems to have a knock-on effect on her sleeping and therefore her mood. So I need to plan some things for half term which will get her out of bed.

Somewhereovertheroad how is your DD getting on?

Yes, ds has asd and maybe ADHD and is constantly being sent home from school because he is exhausted. He shakes, goes pale and faint. He cannot get to sleep at night, his brain won't switch off. He's had blood tests to test blood sugars etc and everything was negative and the DR referred us to the hospital but they won't prescribe melatonin and suggested we go to CAMHS instead to investigate possible ADHD.

But there is a 2 year waiting list for CAMHS and the letter we got from them says they have no evidence of possible ADHD.

My DS is a bit older than yours and he has ASD and he gets in such a mess with his sleep sometimes.

He gets out of sync and then cannot get back into a normal sleeping pattern. For him it is nearly always stress related. While it is going on it is agony for him and everyone around him, as he is bad tempered, slightly paranoid and a bit confused.

He has tried melatonin but gets a bit weird on it, so has stopped using it.

For him there doesn't seem to be any magic bullet. He has to force himself to stay awake during the day and try and get out in the daylight and then have his room pitch black at night - he often wears an eyemask. He also has to try and resist screen time and any coffee after lunchtime.

Eventually (and it can take bloody ages), he will get so exhausted that he gets a decent night of sleep and then he can get back into sync again.

I'm helping him look into counselling to try and deal with the stress better, as I know that is part of the issue.

Good luck OP. I hope you and your DD can find a way through, as it is nothing short of torture.

Dd is in a right mess with her sleep at the minute. Currently school attendance is 83%

I have taken her privately to see a sleep consultant who has prescribed Melatonin and Clonidine. It helped a little.

We are now looking at trying chronotherapy with light in the morning and melatonin. The problem is she would need a week of school to do it and school are already on the case about attendance. Also her behaviour in school is absolutely appalling because she can't sleep.

I feel like I am in a nightmare, I was in such a state over this yesterday.

somewhereovertheroad

The consultant told us that there is a big link between these sleep disorders and low mood, which is one of the reasons they think it is important to treat them. Can you go into school and explain that her mental health is at risk if they don't authorise the time off? Or can you get the private consultant to write explaining what needs to be done?

My guess is that the crucial thing in any kind of therapy is that your DD buys into it, and determined to get better. I'm hoping when treatment is finally available that my DD will be prepared to do the hard work of restructuring her sleep patterns or else we will get nowhere.

I'm sorry things are not going well.

Wow you all sound like us - my son lies in bed reads fiddles with bits n bobs in his room - end up sleeping in the weirdest positions when he finally gets to sleep (which i think is he's finally fallen to sleep in a funny position from sheer exhaustion). He slept fine until he was hospitalised for croup and had steroids - then suddenly day time naps stopped and pretty much since he's was 2 (now 12), he has taken anything from an hours to about 3 to get to sleep. Im just noticing now he has started at secondary school that he is looking really tired - new been quite a grumpy kid for a few years. I think this is definitely what he has - Like all of you we just thought he was someone who didn't need a lot of sleep, But it all makes sense to us reading all of this - He has become frustrated himself recently because it is making him so tired and we are noticing his enthusiasm for sport is wavering because he is tired. I think I will ask if he can be referred to a sleep clinic when I'm at the doctors this week. Fingers crossed the referral won't take too long.

We are away. Staying in a hotel. It is nearly 3am. She can't sleep, so neither can I and now she has woke up Ds.

I have three hours drive home tomorrow.

Seriously never, ever consider going away with a non sleeping teenager.

Omg. I've never heard of this. I'm in my 30s and convinced I have something like this I'm awake till 5am most nights no matter what. I really feel for everyone involved it's not easy. I hate that I disturb my husbands sleep so much. Its really the hardest part for me makes everyone grumpy