DS mental health deteriorating at night

[HotPenguin]

Hello my son is 10 and I'm posting here because the children's mental health board seems very quiet. He's going through a bad patch. His mood starts to plummet around bedtime and he gets into a very negative and difficult frame of mind. Gets anxious about the next day and starts accusing me of having said hurtful things in the past. Threatens to self harm or says he wants to die. Punching himself as a "punishment" for being happy during the day. He refuses to go to sleep and stays awake as long as possible.

He wakes up very moody but slightly more open to reason. Its a lot of work getting him out of bed etc but once he's got going and doing his usual activities he goes back to "normal". Next evening the cycle repeats.

We had an urgent referral to CAMHS but it's going really slowly so would just like to know if anyone has experienced this. It's difficult to help him because when he is in the negative frame if mind he says he wants to be miserable and wants to hate himself so he refuses all help.

I would order some melatonin gummies from the States (I get mine from iHerb) and give him one or two around the time he starts to spiral.

This response will probably horrify a lot of MNers but it's ultimately what a paediatrician or CAMHS will end up doing, in about two years when they finally get around to seeing your child.

I would just cut out the middle man and see if it helps.

Ds is 17 and night time and before bed are always his worst times. Low mood will plummet even further.

I have spent many a night into the early hours just sitting with him.

Ds tried melatonin and it didn't work. He's now on promethazine alongside an anti depressant and bedtime has improved a bit. But he's older than your Ds.

Does he have any difficulties at school? Is he getting any support there?

In hindsight Ds's MH difficulties started around the age of 10, he also had undiagnosed ASD. He unfortunately went many more years unsupported. Which has caused complex difficulties. So you are definitely doing the right thing in seeking support now.

The response from @theqentity does not horrify me.

You may not even ever get seen by CAMHS at all. In my area the waiting lists are that long you get kicked off it after a while and have to reapply - putting you at the bottom of the queue. And I know this is horrid but one of mine was only seen as he had made a real suicide attempt with blue lights needed - they don't see cries for help. You might get a referral to an online course in that case as happened for a friends DD.

Therefore I strongly strongly recommend you go privately - if there us any chance you can. Even if it means scrimping in other areas.

Thanks for your responses, DS is already diagnosed with ASD. One reason I'm keen to go through CAMHS rather than private is if I need to get him an EHCP. But obviously I will go private if I need to. I was offered melatonin for him previously but I didn't take it as he had no sleep issues so maybe I should try that route.

This is a wild wild stab in the dark, but I'm currently undergoing some tests as I have adrenal nodulation and have been referred to an endocrinologist. I've googled some of the tests as they're not typical ones that I've heard of (one being 24 hour urine to test for cortisol levels) and I came across one article about cortisol and the circadian rhythm.

www.zrtlab.com/blog/archive/cortisol-and-melatonin-in-the-circadian-rhythm/ I can't find the exact article I found but there are similar ones when you google cortisol and circadian rhythm.

It's not something I've heard much about as I think it's quite rare to be referred to an endocrinologist, but just the way you described the timing of the mood changes, struck me as maybe being somewhat linked to something like cortisol.

I have no idea how you might go about asking to be referred for these tests as prior to meeting the Endocrinologist, the GP had ordered some tests (parathyroid or something and they were normal, so it's the presence of an adrenal lesion found on a CT scan which prompted the referral), but nothing like the amount of ones the consultant ordered. Sometimes these lesions can overproduce certain hormones so that's why they're testing really. If I had no physical issue found (while investigating something else), I wouldn't have been referred at all.

Have you specifically detailed the peculiar timing of the mood changes? I'm sure a GP will try to say oh it's just 'sleep anxiety' or some such explanation, which perhaps it is, but maybe a physical explanation might also fit?

If you feel he needs an EHCP then I would do a parental application now. Ds's mental health started to deteriorate in year 6 but things really did start to break down in secondary ( he didn't get his ASD diagnosis until he was 15). He didn't actually get an EHCP until he was 16 and I think there were so many lost opportunities to help him and maybe prevent some of what has happened.

I would definitely talk to school too, about what you are seeing at home. My Ds manages to mask in school and they never see how distressed he is. All that comes out at home.

Maybe while waiting for the CAMHS referral, you could pay privately for an Endocrinologist? It took one consultation where he had reviewed the CT scan and he ordered the tests. Obviously in my case there was sound reasoning perhaps in terms of the physical lesions on my adrenal gland but maybe if paying privately, they would do the cortisol one? Without going into astronomical fees for consultants, that one test (24 hour urine), would at least rule one thing out?

These are some of the symptoms of overproduction of cortisol

www.healthline.com/health/high-cortisol-symptoms#symptoms

@Punxsutawney and @theqentity my son is tired and he's never had trouble sleeping, the issue is that he is actively trying to stop himself going to sleep. Do you think melatonin will help? At the moment I'm just focussing on getting him into bed and if he won't turn the light off I leave him there and he tends to fall asleep eventually.

@Punxsutawney. My problem with ehcp is that we don't have evidence of him needing additional support in school. He's doing well academically and likes school. I do think the pressure of school might be part of the problem and I want to get him into a secondary school with good pastoral support, but it feels like I won't be able to get EHCP until he totally breaks down and stops going to school.

Thanks @JetTail for the cortisol information, that would make sense with him being autistic and suffering from anxiety generally.

I think from my memory of what I read, cortisol is the fight/flight/freeze hormone and it should have peaks and troughs in a normal day (where no threat is present requiring it) roughly coinciding with the circadian rhythm or day and night and sleeping at night. When it's being produced incorrectly, that can interfere with things like sleeping or him being able to sleep (if his body is producing fight/flight hormones at bedtime, even if tired, he will be stressed as his body is in extreme danger mode. Well that is how I interpreted what I read).
Do you have a blood pressure monitor at home? Might be worth buying once with a small cuff (child size cuff), just to keep an eye on it for a few days to get an idea of the typical BP and then when he gets this stressed feeling at night, check to see whether it's higher than normal? That's what I would do, but that might not be wise or it might be misleading or it might stress him further, so maybe wait to see if other posters might agree or disagree with that advice.

*buying one

You can buy a BP monitor from Amazon with next day delivery. They range in price but best to get one with a small cuff as if his arms are thin, the normal cuff won't stay put as the velcro won't attach.

In order for him not to get stressed by it, just maybe say you're going to track yours for a week to find out what it is and then say, we can track yours too if you like? Then he's not going to think it's about him ifykwim?

Can I ask how/when/why he was diagnosed with ASD?
Also, who made the urgent referral to CAMHS? A GP or a school professional? For what symptoms?
I don't know much about CAMHS, apart from that it's the mental health department for children as far as I gather (from reading posts on here actually).

Hotpenguin it is possible to get an EHCP for DC who mask in school, and EHCPs are about much more than academics. Mental health, social and emotional development are just as important. It is worth applying and appealing if refused, the majority of appeals are upheld. The good thing about EHCPs is they can include mental health support in excess of what is usually otherwise available via CAMHS.

Melatonin is worth a try, it might help, it might not but it is worth ruling out.

You could ask for a referral to a sleep clinic. If you can get them to accept a referral the waiting list may not be as long as CAMHS.

@JetTail we have talked before about getting him a smart watch so we can tell if certain times at school are stressing him by looking at his heart rate. I'm not sure he would tolerate having his blood pressure taken. Maybe a smart watch is worth a try.

@imitatingdory I've looked into getting an EHCP before but the problem is a lack of a evidence, how can we prove that he needs adjustments at school? I had understood that we need to organise an ed psych report etc otherwise the application will just be turned down. Is that right?

@JetTail it was the GP who made the urgent referral due to him threatening suicide.

ASD was diagnosed quite a few years back.

Smart watches, well the ones I've had (cheap Chinese ones) are utterly useless and wildly inaccurate. I can't comment on something like an Apple Watch or the other well-known brands. They give a random reading. I know that as I have a BP monitor which is accurate (accurate to paramedic's equipment and hospital readings) and my not-very-smart watch will give readings like 120/80 when my actual reading is 90/70. I would try a bp monitor. If he's never had his BP taken tell him it's to see whether he'll be able to bear pain or something while it's tightening? Maybe you try and say, 'oh no, it's getting too much, do you think you could last longer than me ds?'
Obviously, without knowing him, it's hard to tell how much you can try to dupe him into having it taken. It shouldn't be painful really, though the one I have currently, pinches, but with a long-sleeved top it avoids that.

When the GP referred to CAMHS (rightly), did he do any physical tests like bp, heart rate, bloods, weight, height, things like that?

This might be a very obvious question, but has he experienced any trauma? Abuse? Bullying? Bereavement? Recent separation of you and his father/father figure? Anything new, such as a new baby sibling? A new relationship for you? They're very personal things to ask you so obviously you don't have to answer them here. I ask as if nothing external to him has happened and his symptoms are worsening, it's more likely to need medication perhaps as it's not just a normal reaction to something which is causing him stress, it's either physical or physiological.

Hotpenguin No, you don’t need an EP assessment before applying, an EP assessment will be part of an EHCNA if the LA agree to assess. You don’t have to prove DS needs an EHCP. The initial threshold is relatively low - a) has or may have SEN, and b) may need SEN provision to be made via an EHCP.

DS has ASD so the first part is the easy part, the second part is more difficult but with DS saying he doesn’t want to live and an urgent referral to CAMHS accepted you could make a good case.

Are the school not providing any support at all? No social skills support, emotional literacy support, nurture/counselling/interventions?

You may find DS’s MH difficulties stem from unmet needs relating to ASD, and if the unmet ASD needs were better met the MH difficulties would lessen (I’m not saying go, but reduce).

You don't need an EP report HotPenguin. It's completed as part of the EHCNA.

We had zero support from anyone (apart from encouragement on MN) when we applied for the EHCP. His school were against it and at that time CAMHS had refused to see him. So it definitely is possible.