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

[Endlessdark]

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.

Sorry to hear the birthday party was tricky @Endlessdark - I took DTS1 out of quite a lot when he was younger as he just found them too overwhelming! Even now (at almost 8) he will get worked up over them rather than enjoying it. He still has a meltdown thinking about his friend's party and other children being 'mean to him' (I think they were just teasing TBH and it got out of hand!), and that was last December

Your DC sounds much the same as mine @Giraffesanddance - it's still constant "Mummy, Mummy, Mummy" and harping on about a raffle prize he won a year ago. I love him dearly but it's hard work!

We would never have been allowed TVs whilst eating @Phineyj but it's the only thing which gets DTS1 eating a decent amount I think partly the 'white noise' and partly because he's genuinely not that interested in food, he isn't a big eater. Constant beige food too, of course!

@unlikelychump you might find this thread useful too

I wouldn’t necessarily discount the melatonin. I’ve seen firsthand (albeit with an adult) how much is can transform sleep. Would your GP consider sending her to a sleep clinic to see how her brain works when she sleeps? I know that sounds full on and I’m not 100% sure if they do it with kids but it might be worth a chat.

Just to say as well that I’m so sorry you’re going through such a hard time. This sounds incredibly full on. Did she go to nursery before school? If so how did she get on there? Would an after school club, one where you are both involved (drop off situ), work? It seems like she looks to you for all of her stimulation and entertainment. That is incredibly draining for one person.

Sorry meant an after school club where you are not involved and could just drop her off

The things that saved my sanity when I was in a similar situation with my 5 year old were a private neurodevelopmental assessment, so we didn’t have to wait years on the NHS. I put it on a credit card. Then a further private sleep assessment with the same team. My DS was taking 1-2 hours to fall asleep, while listening to an audio book and getting more and more agitated that he couldn’t get to sleep. He now has slow release melatonin and falls asleep in 20 mins. They have to have a break from it though, so either every weekend or they take it all week during term time and don’t in school holidays. We have a break Fri & Sat nights and then he falls asleep in an hour usually, never 2 hours anymore, probably because he’s not overtired anymore.
He had non prescription melatonin but although it sent him to sleep quickly he used to wake at 2/3 and not go back to sleep, then he had slow release for a couple of weeks before we got the prescription and that makes all the difference to keep him asleep.
It’s taken me years and years to get school to see that he needs support. He holds it all in all day for them, then has meltdowns at home.
He also constantly craves attention from me and his sibling. Things are much better than they were a couple of years ago though. If you can’t afford a private assessment I’d definitely ask the GP to refer you on the NHS. Look online for lists if symptoms of ADHD & ASD in girls and OCD. Point out to school how what they’ve said fits so they can back you up. So many children mask their difficulties at school. They don’t want to get in trouble and don’t want to stand out. Then at home they feel safe to let it all out, lucky us eh.
I really hope you all find some help and keep posting OP.

I had one hidden for a while on the money section.

Have no idea why as the advice was standard advice you'd find on websites like gov.com and CAB. Was totally baffled.

One of mine was hidden the other day as well, I think it’s the mention of melatonin gummies. Obviously not on the money section though 😂

Hi all,
At the risk of being 'hidden' myself, we should say that there are steps in place to protect from spammers so User17865 was onto something with her guess (and we've just 'unhid' it so you can see it...)
Apologies if any of you were annoyed by this approach, if ever a post is hidden and you want it looked at urgently please do flag it through reports.

Hi all, just checking in again following another senco meeting with the school. Pretty much they have said they can’t help and I need to go to the doctor again. Just feel like I’m being passed pillar to post and no one is wants to help. Had an appointment with my GP for myself today and he has put me on mitrazapine alongside my usual sertraline to help with my own insomnia and the suicidal thoughts. DH is coming home from Germany today and he managed to get a melatonin spray which is 0.5mg over the counter. What are your thoughts on this? He thinks it’s a great idea but I feel uneasy doing it without a doctors approval… so no change at all here! Last night was horrific and she was also up in the early hours for a while. Baby dd also has tonsillitis so had been very uncomfortable at night, all while I sit and wonder how long you need to go without sleep before you just die 😆

Hi OP, try the spray.

Doctors don't supervise the melatonin even when they do prescribe it in my experience!

I mean come on, when have you known the NHS be proactive...

Sleep is important.

Also, put together an action plan with DH for the next couple of months that includes opportunities for you to get property rested so you can do the EHCNA paperwork and/or look into a private referral for DD. The initiative has to come from the parent. Very rarely will it come from the school.

Oh god OP it’s such a rough time you’re going through. I’m sorry if you’ve already answered this but do you have anyone who could take DD for a night so you could have a break? What is going on at the moment isn’t sustainable at all, particularly for your mental health. Any parents, friends, siblings etc. who could have her for just one night?

Also do you have anyone who could go with your to the next GP appointment who could really advocate for you and DD? I think sometimes it’s easy to get fobbed off by GP’s and you really need someone with you who is willing to be the ‘bad cop’ and keep pushing. I think melatonin would make a difference but I understand your reluctance to do this without a prescription. They need to know that “no” isn’t an answer and if they won’t prescribe it to offer a viable alternative.

Sorry now but you are at your wits end. Please, please give her the spray. Just give it to her for 2 weeks and see what happens. You are feeling suicidal. You NEED to put yourself first now. You won't be able to help her if you have a nervous breakdown. Sorry to be so blunt but I really think you need a break and you need to give every option a go.
xx

Have you brought her to the doctor with the intention of asking for a melatonin prescription?
The way I see it is that they will prescribe it. It's not like a drug that is highly addictive and ruins lives. They're just cautious.
Seriously, go privately and don't leave till they at least give you a few weeks trial script. x

The doctor won't do blood tests or anything like that before prescribing so all you're doing by giving the spray is a trial like the doc would do.

In my area a GP won’t prescribe without a Consultant asking them to. I’d try the spray if I were you OP. She might take the gummies easier though.
I’d also push the GP to refer her to the Paediatricians to assess for ASD & ADHD.

Agreed.

A paediatrician prescribes melatonin. It's not necessarily that the GP won't - they're not allowed to without the paediatrician's say so.

Daft considering the over the counter availability in other developed countries, but that's my understanding.

Feeling very sorry for myself with DD awake for 4 hours and counting. Had a meltdown, then wanted to play and Shout, Now just wailing and there’s nothing I can do. Last night was 4 hours too, both in 10pm bedtimes which I hoped would help. DH away until tmro too. So depressing these middle of the night hours.

@Ahna65 that's rubbish. Can you put the radio on for some company? And get outside for a bit of fresh air?

Oh @Ahna65 i really do feel your pain, it’s absolutely brutal isn’t it. I’m also feeling very sorry for myself but I can’t really complain, I should be ecstatic really! I tried the spray with DD on Friday night and Saturday night, just one spray so 0.5mg melatonin. She was asleep both nights within 10 minutes. It was like an absolute miracle. I’m hoping tonight it works as well. It’s such a light switch effect, cannot believe it has worked really. I tried taking the mitrazapine myself on Friday night but felt like an absolute zombie all day yesterday so think I will probably avoid that and ask for something else. DH has been fairly unkind since he came back, has said that I need to cope better basically and not complain to him anymore. So if I can’t ever talk about my feelings with him, do I just bottle them up? How healthy is that?? Anyway, sorry to be a downer! I should be over the moon but I’m scared to say anything in case it suddenly stops working again!

Well I'm glad the melatonin helped. Now you just need something that works on your husband.

!