4 year old not sleeping

[sunflowers93]

Apologies in advance it’s a bit of a long one but advice needed please.

My 4 year old child is on the pathway for a possible ASD diagnosis. When he was younger he slept great, he went to sleep quick and easy where I could put him in bed and leave the room and slept through the night the majority of the time, then progressively got worse over time.

its now gotten to the point in the last 6-9 months its taking him 1.5 hours at least to go to sleep and I can’t leave the room, to him then waking up around 12pm and staying awake till around 4am(ish) (like now for instance as I’m writing this post) and again I have to be in the room with him constantly because he gets distressed otherwise.

he’s on the waitlist to see a paediatric but the wait is around 9 month long. His GP can’t do anything due to his wait for a diagnosis, the 0-19 years team can’t do anything other than refer him to paediatrics but as he’s already on that list it’s just a waiting game.

It’s gotten to the point that I’m struggling to function me and my other half even go to bed once he’s a sleep sometimes because of the lack of sleep we get but then have absolutely no down time to decompress and although my child doesn’t always show it the lack of sleep will be affecting him too! We’re then up at around 6:30 to get ready for school and work.

In total my child’s getting about 5.5 hours sleep (broken sleep) and I’m getting around 4-5 hours.

it’s affecting our health - the whole of December has been a write off, my child’s had a constant cough for 6 weeks which stemmed from a cold which he has had on and off 3x over the course of the 6 weeks.

I’ve had a sinus infection, tonsillitis and now starting with a cold my body is completely run down and struggling to fight off any infection

we’ve just bought some gummies from Holland and Barrett to give them a try after some research but other than that I’m at a loss and no idea what to do in the meantime whilst we wait for the paediatric appointment

Any friendly suggestions welcome!

You could try an antihistamine. Often the first one tried to help with sleep is Promethazine. Some GPs won’t prescribe this for sleep issues unless initiated by paeds/CAMHS, but if you wanted to try it, you can buy it OTC. If Promethazine doesn’t work, there are other antihistamines sometimes used.

Some people buy melatonin online if that is something you want to do.

You could see if the sleep clinic has a shorter waiting time. In some areas, it is shorter than the wait for paeds.

How much exercise is DS getting each day?

How is DS’s eating and drinking?

How are DS’s anxiety levels during the day? Sleep difficulties are often exacerbated by increased dysregulation during the day. What support is DS receiving at school?

How is DS’s communication? Can he communicate if there is anything specific he is worried about?

Have you tried co-sleeping?

Thank you! I don’t want to buy anything too medicated (if that makes sense) without speaking to a paediatrician first.

I didn’t even know a sleep clinic was a thing! I will look into this one thank you!

He is non stop regarding exercise, constantly on the move whether it’s in the house or out and about. Running, on his indoor trampoline, space hopper you name it, he doesn’t stop! So I’d expect him to be wiped by the end of the day but it’s like something in his brain just isn’t switching off.

eating and drinking is great, he will pretty much eat anything we put in front of him, he has balanced meals and only drinks water.

Ive never noticed any anxiety in him in the day just typically at night when he feels like he’s being left alone, his deregulation in the day typically comes from frustration due to his speech and language delay as well as his difficulties with other areas.
I could be wrong but I feel it’s the opposite with him, I feel it’s his waking in the night that makes him more deregulated during the day.

School are great I can’t fault them at all, they have brought outside agencies in to do intervention work with him as well them being taught to strategies on how to help him.

like briefly mentioned above his communication is delayed. He can tell us a lot of the things he wants, he knows his emotions and can tell us how he is feeling but cannot express why he is feeling that way or what’s making him feel that way.

we have brought him into our bed during some nights but he prefers his own bed and often signals/asks to go back

hope I’ve answered all your points there and I appreciate your comment! ☺️

If DS prefers being in his bedroom, have you tried sleeping in there with him? Either in a bed with him or on a mattress on his floor.

Not specifically related to sleep but about more support in general, has an EHCNA been requested?

I don’t sleep on there with him no as I want to be able to teach him to settle himself like he used too.

also I’m not sure what an EHCNA is?

If you are at breaking point with DS’s sleep and you think it is having a negative effect on everyone’s health, I would try sleeping in DS’s room. You can work on settling alone and staying asleep alone in DS’s room once the current acute sleep disturbance is more settled.

An EHCNA is an Education, Health and Care Needs Assessment. It is the assessment you first request as part of the process of getting an EHCP. An EHCP is an Education, Health and Care Plan, which is a legal document that sets out a child’s needs and the provision they require to meet those needs. They only apply in England. If you live in another home nation they have their own systems - if you are, if you want to post where you are I will signpost you to their SEN system.

That’s a good point, I will give it a try!

ooh right ok! So school are handling the process of the EHCP. They have had agencies coming in gathering evidence and making referrals ready to apply for an EHCP.

You don’t need to wait for outside agencies before requesting an EHCNA. You can do that now. On their website, IPSEA has a model letter you can use.

Personally, I wouldn’t wait. The threshold for an EHCNA is relatively low. You only have to show DS a) has or may have SEN, and b) may need special educational provision to be made via an EHCP. At this stage, you don’t have to show DS definitely needs at EHCP. The outside agencies don’t need to provide evidence before the EHCNA request. They can do that during the EHCNA. Many have to appeal to get a good EHCP. If you have to, you want all the time you can get rather than delaying making the initial request.

My DD's similar. She's taken slow release melatonin since she was 7 (she was prescribed it by the paediatrician at the ADOS which is the autism assessment). It was then prescribed by our GP. She's been on it for 5 years now. She just seems to make less of it than average.

You need to think balance of harms with this kind of thing - DC's health, growth, education, and your and your partner's health and employment are all affected by this. The arguments and stress we had over sleep between ages 3 and 7!

Oh perfect I will take a look at it thank you very much!

Oh really? Just waiting for this appointment and hopefully it’s sooner rather than later and they help!

oh god I can imagine, it’s so difficult isn’t it and puts so much strain on things!

hope things are better for you and your DD now?

Yes thank you. After the 4 years of hell and our marriage nearly floundering, she's in year 8 of a mainstream school (with an EHCP) and she does sleep! There is light at the end of the tunnel, sister, hang in there!!

I bet! It’s so difficult when you’re both trying to continue with daily life on no sleep it definitely takes its toll. It Does feel like there is no end to this at the minute but you’ve given me some hope!

I got excited yesterday because I got a digital letter through for DS and just saw ‘community paediatric’ I was like finally!! But then further down it was just them asking me if I still wanted him to be on the waitlist. My excitement quickly turned to disappointment haha.

Care Opinion https://share.google/v83pJMqmSaQgo889O

If you contact this organisation they should be able to help you find out who manages the paediatrician waiting list you are on. You can then email them and explain why you urgently need to see the paediatrician and say that you can be available at short notice if there are cancellations (if this is true).

I managed to get DD seen slightly quicker this way and it reduced anxiety that we would miss an appointment due to holidays etc.

Now she has an EHCP she gets an annual check up.

That’s perfect thank you very much!

My daughter went through exactly the same, turned 4 and just suddenly seemed
tonot want to sleep. We keep the same routine every night, I also put her on mighty kids magnesium which seemed to help.
has their been any change at all? I noticed my child went through this phase when she went from a cot to a single bed, but it did last around 6/8 months of constant waking up at midnight to which she’d be jumping
laughing and stimming at the top of her voice all night. It’s calmed down now and she has the odd night here and their but she’s a lor
calmer