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Cracking up with 5 yo DDs sleep (or lack thereof)

116 replies

Endlessdark · 09/06/2023 21:11

DD has always been a rubbish sleeper, stopped napping shortly after 1 and in general has bundles of energy. I have a 1yo dd also and they share a room.

have had some concerns about her RE ASD, however haven’t managed to successfully get her assessed despite going down 3 different avenues. First I contacted school who said they can’t help as she masks as school but gave me the name of the local authority to contact and said also go through GP. Tried local authority who said no they don’t take direct requests, went through GP who said wait 3 months and if no improvement they will send referral. Waited the three months with things getting worse, had an appointment with the GP who sent off referral in May. Received a letter last week saying the referral was rejected because not enough info was supplied and told me to go through the school. So yep, round and round in circles. DH not fully supportive of an assessment as he thinks she’s just a quirky kid, however doesn’t get the brunt of her behaviour at all and he travels for work a lot. Despite this I contacted a private paed who specialises in ASD for an assessment, just need to find the funds for that.

basically dd will not sleep at night. It takes hours of fighting before she will go down. She’s often awake in the middle of the night anywhere between 20 minutes to 2-3 hours. Wakes up early too. I keep her very active, playground every day after school as well as playing at home. She eats a select few foods but a lot of them if that makes sense so she isn’t hungry! I’m on my fucking knees, this week has been awful. She wakes her sister up multiple times a night, I’m getting barely any sleep. I lost it tonight and demanded DH come home because I can’t cope with the 4 hours of endless fighting. I get zero time alone, house is a shithole all the time because as soon as I clean she is wrecking again. please has anyone got any advice??? As I wrote this she has gotten out of bed again. I can barely keep my eyes open I’m so tired.

OP posts:
unkownone · 10/06/2023 07:18

My youngest was the same. ASD and ocd intrusive thoughts now. She’s turning 15 and still doesn’t sleep. Now on melatonin which I think is helping. Her therapist recommended it as it was my last resort but it has been over 14 years lol so figure we’re there. I ordered ours online it’s a bit stronger than we can get here which worked better for her.

Phineyj · 10/06/2023 07:19

Further to @MissSusanPevensie's post, the terms to Google are "Local authority name" + "local offer" and that will take you to the list of local services and charities for SEN.

There is a useful booklet called "Sleep Seekers" by one of the ADHD charities. While it has no advice not already given on this thread, it does show that (based on their sample) sleep problems run at about 2x average in the ADHD population. That cheered me up very slightly.

MissSusanPevensie · 10/06/2023 23:35

Thank you @Phineyj ! I didn't realise for ages that our local council had so much info on their website, I found most of it via Google but the shortcut would have saved me a lot of time...

DTS1 was exhausted tonight but still took nearly an hour to fall asleep. Aaaarrrggghhhh.

Interested in this thread?

Then you might like threads about these subjects:

Phineyj · 10/06/2023 23:39

Gosh, an hour is our optimal outcome! It was 2-3 before the melatonin. She's 10 and we still have to sit in her room...

No.picnic this parenting lark!

MissSusanPevensie · 10/06/2023 23:55

Oh gosh @Phineyj - DTS1 is almost 8 and I still sit with him, I can't see it ending any time soon either as if I don't he gets in such a state that it takes even bloody longer to get him to sleep. I was really hoping for a shorter time tonight as he was absolutely exhausted, but nooooo...!

Phineyj · 11/06/2023 00:14

My best friend's child is similar but nearly 2 years older. Friend says somehow magically between 10 and 12 it became really uncool to have a parent sitting in your room.

Here's hoping!!

SiouxsieSiouxStiletto · 11/06/2023 07:32

Phineyj · 11/06/2023 00:14

My best friend's child is similar but nearly 2 years older. Friend says somehow magically between 10 and 12 it became really uncool to have a parent sitting in your room.

Here's hoping!!

It is but that just meant that they still didn't sleep and were difficult to get up and more anxious. Sorry.

CrushOnJonah · 11/06/2023 07:56

Sympathies OP, I have a 5yo DD and she is so, so much hard work just now. I don't think she has any additional needs, I can't imagine how much harder that would be. We're strung out with her behaviour, sleep issues, food issues, emotional regulation and just general difficultly just now.

PossiblyNotOne · 11/06/2023 08:27

The melatonin has been a life changer for my DS, but no you can’t get it from the GP. Our paediatrician prescribes it and we have to have it reviewed by the pharmacist at every renewal. It’s made a massive difference. I’ve never heard of it causing nightmares, it just replaces the natural hormone that the body doesn’t produce. You might be able to buy melatonin gummies.

I tried everything, weighted blankets, massage, calm environment, dim lighting, bed fine stories, meditation apps, you name it. None of it worked.

You need to have a proper chat with school, especially about the masking as we got a lot of our information from school to support the assessment. Girls mask, it’s well known. But the waiting list for assessment can be at least 2 years.

Endlessdark · 11/06/2023 09:35

@MissSusanPevensie 2-3 hours is what we have here! It’s bloody relentless. Last night was a little better because I let her stay up until 9 and listen to her yoto player in bed with headphones and she eventually passed out around 11 with her headphones on 😭 she was quiet at least! But up again at 7 this morning. Surely that’s not long enough for her little body?! Going to check out the council website, I know I did look before and emailed one but didn’t hear anything back. We are off to pick some fruit today and then go swimming so hopefully that helps tire her out (unlikely!). Gosh I envy parents who have children that sleep!!!!

OP posts:
SiouxsieSiouxStiletto · 11/06/2023 09:52

Endlessdark · 11/06/2023 09:35

@MissSusanPevensie 2-3 hours is what we have here! It’s bloody relentless. Last night was a little better because I let her stay up until 9 and listen to her yoto player in bed with headphones and she eventually passed out around 11 with her headphones on 😭 she was quiet at least! But up again at 7 this morning. Surely that’s not long enough for her little body?! Going to check out the council website, I know I did look before and emailed one but didn’t hear anything back. We are off to pick some fruit today and then go swimming so hopefully that helps tire her out (unlikely!). Gosh I envy parents who have children that sleep!!!!

Hope you enjoy the fruit picking. Our local PIYO strawberry place was picked clean yesterday so is shut today.

I don't know if you've had a look but there's a SN Children section on MN which you might find useful, although you've had some very good advice on here already Wink

ImInACage · 11/06/2023 10:01

She sounds very much like my DS. We didn't manage to get him assessed until he was seven, despite me repeatedly trying since he was three. He was diagnosed with ADHD, with a suspicion of ASD, although he still has t been assessed for that. His slip was very similar, he would rarely fall asleep before midnight, even after the busiest of busy days, he'd wake up throughout the night, often for hours. As soon as we told the assessing psychiatrist this, after his diagnosis, he prescribed prolonged release melatonin and we haven't looked back. He's now 11 and asleep by 8.30pm, wakes at 6.30am on the dot and only very rarely wakes in the night. We gave a week's break during every school holiday and his sleep reverts back to being terrible, so he hasn't outgrown it, despite our hopes that he might.

I'd keep pressing for an assessment, it's a long road, but worth it in the end. Like you, his sleep nearly broke me and the medication allowed us all to finally get some rest!

ImInACage · 11/06/2023 10:02

Sleep, not slip!

LadyJ2023 · 11/06/2023 10:14

At thay age n below they do still need naps or ther little bodies go into over work mode

Phineyj · 11/06/2023 10:16

@ImInACage our experiences have been so similar!

However I spoke with DD about taking a medication break this summer holidays and she's not keen - she articulated how the ritual of taking the tablet helps her to not worry about whether

As a parent I wish someone was doing a proper long term trial on extended melatonin use in children though. I don't know why no-one has. Sleep is so important and surely the data is there, that there's a strong association between brain differences and difficulties with it.

ImInACage · 12/06/2023 19:32

I can't understand why a trial hasn't been done either.

The breaks are awful, full of anxiety for DS and all of us end up exhausted, but our consultant told us we have to have regular breaks, or he'll need higher and higher doses for the same effect. We are only prescribed enough for the exact amount of weeks he's in them and even that is a mission and a half. Our GP fights it every month, despite having been repeatedly told by the consultant that he needs them, med reviews carried out twice a year etc. The endless fighting for necessary medication is soul destroying.

Phineyj · 12/06/2023 20:19

It's only one data point but DD's been on them nearly 3 years now and we haven't had to increase the dose - the reverse really - she seems to be able to regulate her sleep better (she must have had very high cortisol before with all the screaming and shouting before bed).

Since we switched to online repeat prescriptions with Boots, there's been no issue with getting sufficient supplies either.

You'd think a consultant would rank higher than a GP but the medical profession are a bit of a law onto themselves!

MissSusanPevensie · 12/06/2023 23:24

I spoke too soon with one hour falling asleep time @Phineyj - today was a good two hours Sad DTS1 was absolutely exhausted and still couldn't get himself to sleep. He ended up wrapping an old muslin round his head because he said it helped Confused

It seems like he has a 'stopping point' - if I get him to bed, lights out, white noise on before he becomes overtired - then it'll 'only' be an hour or so. Past that, he's hideously overtired and can't calm himself down...

I'm really surprised about the (lack of) melatonin trials too; my friend's DS is now 15 and he's been on melatonin for at least 7 years (he has severe ADHD), you'd have thought that other children must have been on it longer and some studies could have been done?

Phineyj · 13/06/2023 07:26

Oh no, that's a nightmare when that happens. Was it hot? The heat isn't helping anyone. At school my year 10s were ratty yesterday and my year 12s were like zombies!

My daughter can get "past it" too and massively struggles if anything even slightly exciting is happening the next day or in the near future.

Regarding the melatonin, I don't know for sure but it is an off label use and I think setting up a clinical trial for children is very difficult. My cousin works in that general area and I'm going to ask her to look into it.

MissSusanPevensie · 13/06/2023 23:15

I did some investigating @Phineyj and it looks like the cause of DTS1's sleeplessness was partly the sticky heat, but more because DP was doing bedtime and ignored all the 'safe' routines... he likes a snack before bedtime, a nice long shower or bath to calm down, and having a story read to him before lights out, white noise on and (hopefully!) sleep within an hour. DP was 'busy' Hmm, got him in and out of the shower quickly then stuck him in front of the TV for ages whilst ignoring his requests for a snack... I was only gone an hour and a half for an activity I do once a month. I spent longer getting DTS1 to bed afterwards than I did actually at my sports club!

I wonder why the melatonin trial could be tricky... maybe because quality sleep (as opposed to just hours) is difficult to measure? Or kids are harder subjects than adults because they might not understand whether things are improving? If your cousin can advise I'd be really interested to hear!

Phineyj · 14/06/2023 07:35

That's so annoying for you! When you have both got a bit of sleep, time for a heart to heart with DP I think.

DH and I do get regularly exasperated with our ridiculous bedtime routine but we've learnt the hard way.

DD reckons she can't go to sleep without DH there. He had gone out to an event for a couple of hours last night.

I ended up bribing her into bed by saying I'd buy a new lip balm she wanted. She got into bed promptly!

Fortunately she's not that ridiculous every night (and fortunately DH doesn't go out that much) or I guess bedtime would cost me £35 a week.

Angry
Phineyj · 14/06/2023 07:37

And we had vocal highlights from Les Miserables at 5am.

That castle can feck off and take its clouds with it.

AngryAngry

Endlessdark · 14/06/2023 18:10

Just checking in again. Sleep has still been atrocious and I have been like a dragon with her. Feeling so guilty about that but goodness it’s so hard and I’m really hard to be patient with her but it’s so hard. Thankfully I have a meeting with her teacher and the school SENCO on Monday. Has anyone got any tips for how it will go? Do I keep dd with me or is it just me and them? Suddenly feeling nervous like maybe I am making it up and it’s all my fault 🙈

OP posts:
Phineyj · 14/06/2023 18:37

Hi OP, what time is the meeting? I would strongly recommend you don't meet with your DD present. That would be mad! She's 5. She's not going to have solutions.

I don't think the teacher or SENCO will do much, but ask if you do a parental request EHCNA, will they support you? Do not accept nonsense about "needing to do two cycles of plan, do, review" before anything else can happen. That is not required, only that DD may have SEN and may need provision to be made.

Have a browse on the IPSEA website - they have good advice.

I think a poster has already mentioned this - Caudwell Children do subsidised ASD assessments.

Things will happen at a slightly less glacial pace if DD has a diagnosis, and you can ask the assessing paediatrician to prescribe melatonin (or buy some gummies online).

Google the document "Sleep Seekers" (I think Addiss commissioned the research).

Phineyj · 14/06/2023 18:38

@mnhq why has my reply been hidden? It was bog standard SEN advice!