Sleep deprived and desperate

[jackny]

Help! My DS aged 5 (ASD) is not sleeping and is very anxious. He is struggling to settle down and is waking at least twice in the night!! DS won't sleep on his own and is wake crying in his room until at least 10.30pm.

I rang the pead. on tuesday to find that she had left and someone was supposed to ring me back. I chased this morning and our case hadn't been passed to a new pead. and the earliest appointment would be May. They think they will be prescribing melatonin but needed to go through some protocol first. The upshot is that we have to wait until May!! We are knackered and don't know what to do!! Are there are other the counter things we could try?
Fed up and tired

Jackny

Know exactly how you feel, so my sympathies. How about going direct to your GP, explain you are waiting on new paed and wont be until May, tell him that you had been discussing melatonin and hopefully he will prescribe for you. When I see paed any medication my ds has to get is prescribed from my own GP after paed sends letter to them. My ds is 10 has severe autism and rarely sleeps, he's been up since 2-20am this morning, i have sore throat, earache anyway so am at end of tether. He is on meds for sleeping, but had for ages so have little effect now. Good luck, hope you manage to get something sorted before may :)

Poor you sleep deprivation is awful.
Cerebra have a sleep helpline service, I've heard mixed reviews but worth a try if you haven't already.

There's some milk that you can buy in sainsbury and waitrose called Goodnight Milk it's taken from a cow at a certain time so has a naturally high level of melatonin in it. I can't find any in our shops but can buy online. It's with the specialist goats milk and things. It's NOT the goodnight powdered baby milk as that's different. This I normal proper milk. Also apparently bananas help you sleep so perhaps try a banana milkshake. Our dd is up around 10 times a night do i know how you feel :(

tis terrible know how you feel dd has been up since 1.15am, i dont know how she keeps going, we have been waiting 4 months for a sleep clinic appointment at camhs and still no word!! Melatonin has no effect on dd but what sometimes helps and our pead recommended we use untill we get our appointment is a 5ml spoonful of piriton (not the non drowsy obviously) it calms her down and makes her drowsy, we dont give it every night but sometimes needs must and you have to sleep and it does work so maybe worth a try if your comfortable with that, i know some parents dont like to medicate. Is there any way you can take a nap in the afternoon even if you just doze for an hour it may take the edge off. Hope you get help soon theres nothing on earth like sleep deprivation.

Thanks for your suggestions. I will try the GP this afternoon. We have stacks of bananas here at the moment so I will try that tonight and find the milk online. Can you buy Piriton over the counter?

Don't know if will work for anyone else, but ds2 possible asd is terrible sleeper. Have found he sleeps better on floor, just lying on a duvet, with a soft fleecy dressing gown over him then the duvet from the floor wrapped back over him. He sleeps between his bed and ds3s cot. Seems to make him Feel more secure. He also sleeps best in very soft fleecy pjs as he likes the feel of them.

Ask the Gp to email the Paed we managed to jump a six month waiting list for a sleep clinic appointment as they put us on the cancellation list. It hasn't been massively helpful for us as the melatonin only pushed our dd's waking back by an hour and it also was such a battle getting her to take it.
we were seen in clinic within the week but had to wait for 4 days for the pharmacy to order in the synthetic melatonin.

Tell them how desperate you are, I found it almost impossible to function going to work and dealing with a young dd with asd with no sleep-it made the bad days so much worse. I suppose thats why it is so effective as a means of torture.

Involve everyone you can who can email on your behalf , GP, HV, inclusion.

you can get Liquid piriton from the pharmacy not just off the shelf its a common anti histamine so is widely available everywhere.

my gp wouldnt give melatonin on px even though we were waiting to see camhs really annoying when only sleeping 3 hrs a night and taking up to 4 hrs to get to sleep im so tired doc said im not allowed to px it not very fair when saw camhs said have to see how he goes his eyes are black and im stressed out with no sleep how do you think its going to go FFS

Get in touch with Cerebra re sleep nurse-we got an appointment quickly-sometimes someone else looking in when you think you have tried everything can be helpful

Your GP may be able to give you something else if they won't prescribe the melatonin without the paed's say so. We were also prescribed Alimemazine for ds1. You only need a bit but it will get him off to sleep if required. You will need to be very presistent though. We struggled for years with ds1 before we finally got help. I think you need to be very clear how bad it is and very specific about it.