Sleep issues/screaming at the end of my tether

[Strawberrys4]

Hello good morning, my daughter is 2 years and 4 months, I suspected autism quite early with her at around 9months and she is currently awaiting assessment (waiting list is extremely long). She is non verbal at present, doesn’t really respond to any instruction or interaction, doesn’t point, certain skills don’t seem to make sense to her (such as jumping), doesn’t interact with other kiddos, hand leads and lines up her toys. Also does this repetitive’hummmm’ noise and runs back and forth anyway!
I love her so much but I’m completely in despair and at the end of my tether. Her sleeping is DIABOLICAL and I’m in a mess with it. She has never slept through the night but now it’s at a point where she fights going to bed and will scream and scream for about 3-4 hours, sleep for 2 hours scream and scream, sleep for 2 hours again, then wake at 4-5am and be miserable and scream and scream the whole day. I have tried magnesium the usual : establish a calming routine, white noise, piano music, lullaby’s, rocking and cuddling, ect. I saw a peaditrician who actually pre 3-4mg melatonin with 2mg piriton which I don’t really think is a safe long term solution-and it doesn’t work either! I’ve tried lavender, magnesium rub, calming patches, Bioray calm, probiotics, omega (to calm her down), nothing works. I went to a sleep specialist, the HV no one can offer anything that has worked. I have made some mistakes with the TV but try to reduce blue light exposure prior to bed makes no difference. I feel I constantly go to the GP and drs as I worry I’m missing something but they never assess her properly because of the screaming, she has had bloods and a uss and nothing medically was picked up. The screaming is endless and it’s ear piercing, I actually feel I have some hearing damage from her screaming in my ear all the time. I’m finding myself less and less empathetic as it’s literally all the time, no sleep and screaming. I’m a single mum but my mum helps me and she has insomnia so helps a lot with the nights but I don’t feel this situation is sustainable for any of us. I am in a constant place of panic and worry and despair. I know she is frustrated as she can’t speak but I am trying speech and language therapy, ABA therapy and using Folinic acid to nil avail. I’m basically wondering if any parents had anything of the cuff that helped them. I sometimes feel I’m not going to survive this stress every day.

Has she been referred to OT for a sensory assessment? Have you looked at SPD?
Not all OTs are sensory specialists and not all LAs have a sensory specialist.
Is there any inclusive or specialist nursery provision available in your area?

P.S. some strategies here

https://sensorysmart.co.uk/blogs/news/why-do-children-with-autism-and-spd-suffer-from-sleep-issues

3-4mg of melatonin with 2mg of piriton can be used long term, but if it doesn’t work, have you tried any other medications? Was the paediatrician part of a sleep clinic?

Screaming and sleep difficulties can sometimes be related to sensory difficulties so I second a sensory OT assessment?

For you, have you tried noise cancelling headphones/earphones?

Thank you very much for taking the time to respond. I never thought she had sensory issues as such, however I struggle to put clothes or cut nails… and I don’t just mean regular struggle it’s like I’m murdering her… so maybe it’s worth looking into as it could be manifesting like this. I’m in such a mess I can’t see the wood for the trees!

Again thank you so much il read this now! X

Thank you so much! Can it really be used long term? I have never seen on any threads mums or dads using the 2 combined… I get really worried I’m messing up her liver/kidneys…all the supplements I give her. I’m going to look at an OT for sensory issues now. Thank you very much! X

Hope you find some solutions. Look after yourself and rest when you can.

Thank you so much that’s extremely kind… I just want my little one to be ok and happy… I can deal with her being autistic but the screaming and unhappiness is what’s destroying me. Thank you again x

Definitely look into sensory processing issues. Difficulties with clothing and cutting nails can also be related.

Yes, they (or another antihistamine - promethazine or alimemazine are more commonly used for sleep issues than piriton) can be used together long term. Together wouldn’t usually be the first line treatment but if singularly medication isn’t working sometimes combining medications is tried before trying something more hardcore.

Thank you I have written to my local council for OT referral based on what you have both said! I massively appreciate your time and experience in this… I will look at promethiazine too…thank you so much x

Not all ICBs commission sensory OT on the NHS.

Even if your area doesn’t, if you request an EHCNA from the LA (it sounds like DD needs an EHCP anyway), a sensory OT assessment can be part of the EHCNA.

She definitely sounds like she is sensory to touch. Wouldn't be surprised if she had other such as vision or movement. Tried completely blacking out the room?

Also check whether she has abdominal issues especially constipation. Have a GP check whether she has fecal loading which would be a sign - it can give significant discomfort and hamper sleep.

If she is sensory seeking try to give her loads of sensory input before sleep.. think bouncing on a trampoline or a yoga ball, make her go up and down stairs, weighted vest or blanket. See if that makes any difference over a few days. Generally if that's what she needs, she will be a bit calmer afterwards.

Thank you so much. I will try this from this week. She poops everyday (thanks to magnesium) I did just find out she has a milk intolerance which I’m wondering if this is causing sleep issues and general upset as she absolutely loves milk… thank you again for taking the time to write this x

You didn't mention pacifier and feeding. I assume you tried this, but both of my autistic children had oral fixations and would only calm through bottle and pacifier. I'd feed them milk bottles on demand until they were 4 and always left a couple of bottles on the bedsite table to chuck at them during the night. Would lactofree milk still work for your dc? I was told not to feed during the night because of cavities but I mixed the formula with extra water to reduce milksugar and they are now teens and never had cavities in their lives. Or there may be other fixations, like a certain material they like to feel or absolutely can't stand. I'd first look at whether her clothes have labels or rough seams. Very few autistic children can tolerate labels inside pjs, tshirts etc. Have you tried co sleeping? We had to co sleep till teenage years. If everything fails, does she calm with a tablet to watch in bed? Whenever mine just wouldn't settle at all I gave them a tablet to watch in bed so that at least I was safe to drive the next day. It worked when they had colds/pains to take their mind off.

Thank you very much for your post here. So she rejected a dummy quite early but I do still give milk as it’s the only thing that will calm her down. It’s absolutely crazy because I wanted a blood profile on her to ensure I wasn’t missing something down to the distress. I even went to a private paediatrician who say if they done bloods they were doing it for me and not for her. Irrespective I took some finger prick samples and it’s come out she is extremely intolerant to milk! Which could explain the distress… she’s not had any outward symptoms (vomiting, diarrhoea, blood or mucus in the poo), but I thought I’d check allergies to see if something and that’s what’s came out. Thank you for the tablet idea I may use that also. Thank you so much again

Hopefully feeding throughout the night with lactofree/goatmilk will help. The poor mite probably had stomach ache from the thing she craved most to regulate herself. It's such a shame when professionals don't investigate a little bit further, loss of sleep is do hard on everyone, it's torture. Good luck and good on you for taking a prick test yourself.

Thank you for your kindness I appreciate this so much ♥️… absolutely it’s extremely hard as I have felt the medics I see write her of because of ‘sensory issues’. Maybe now I can get her a bit more regulated. Thank you again for your advice xxx