Here are some suggested organisations that offer expert advice on SN.
Sleep issues and cerebra sleep service(8 Posts)
my dd aged nearly 6 is giving me a breakdown. We had melatonin for a year or so to get her to sleep but she was continually waking 30/50 times throughout the night. We've managed to now address it down to 1-3 times but it is crippling us. Tonight I went cold turkey, she woke at just gone midnight and I'd told her prev if she woke and got out of bed and was screaming for me that I wouldn't hear her as I had in earplugs,thinking, let her rant for 10-20 mins and she'll get the message. An hour and a half later I gave in, by that time she's totally flipped out and took another 20 mins to even get her in bed, she'll be awake at 5am ready to start the day if not before. I've just completed ref to cerebra sleep clinic, has anyone ever done this and what was the outcome? I'm also looking into mctimony. This is sending my marriage right down the plughole at the mo and goodness knows why but I want another child but cannot even contemplate due to the sleep issues. Have done all the sleep hygiene in the world, can anyone offer anything? Just sat up in bed typing this while dh snoring away and I'm in work for 8am.
You poor thing. That does sound horrendous for all of you. I went down the neurophysiologist route with DS4 (ASD) as he would sleep for a few hours and then be awake for hours before crashing at 5am. Made for a cranky child. We were px Melatonin, it didn't agree with him and seemed to affect his behaviour after a few days so I stopped it. Next we tried McTimoney Chiropractoring. That has been a revelation. He had 3 vertebrae out of alignment between his shoulders and that was causing him to never sleep properly. He sleeps through now.
My DD has obstructive Sleep Apnoea. That would wake her up several times a night as she would obstruct her airway. We now use a CPAP mask and that has made a huge difference to her.
Melatonin is for kids who find it hard to settle at the start of the night. This means it's not right for those kids who can't STAY asleep iykwim.
There are other meds for kids who fall asleep on time but won't stay that way. I think chlopadine is one such med, (not sure if that's the right name).
The sleep clinic at Evalina Children's hospital (part of St Thomas's, London) has been very helpful for us. They really seem to know about lots of hints and tips that your local team may not. They constantly run various clinical trials of things from weighted blankets to brand new meds so are right at the forefront of knowledge. Prof Paul Gringrass is the man in charge of the NHS service.
Based on my own experiences with them recently I wouldn't hestitate to rec them to other parents at the end of the their tether. In addition they are just very nice people (important when your own nerves are shredded thru sleep deprivation). I finally have hope where previously there was none.
Cerebra clinic were very useful to us. I also used the chirporactor recommended by sallybear and it has definitely made a difference to ds1's sleep.
I've found a mctimoney practitioner and it's fairly close to us so I'm hoping to get my dd in on weds. Thanks for your comments it means a lot to know we're not the only family going through this. I just don't know how she keeps going, she does not nap during the day and hasn't since she was about 12 months. I've also looked up the sleep clinic in London thanks. Anything that will break this horrible habit and give me a straight night through I WILL DO!!! Thanks again to all.
manc1 How is your dds communication. The only reason I ask is because DS1 is non verbal and has ASD and his sleep troubles started last year because he was severely constipated. He couldn't sleep because his stomach was hurting and had no way of telling us. Once we got on top of his constipation, his sleep improved gradually and without the need for medication. Just thought I mention that sometimes it could be a physical cause such as reflux etc which might be stopping her going to sleep as opposed to neurological.
Deirdre Edwards also sorted out DS4's constipation too. He is very regular now after 4 years of suffering with it.
As for reflux, if your DD gets a lot of chest infections then reflux is usually the culprit.
Deirdre has said that she would see my DD about her reflux issues. She gets night time reflux. The only real way to check is to wear a ph probe for 24 hours which measures the level of acid that travels up the oesophagus.
I'm afraid there are no constipation issues, or reflux. She is quite communicative, I feel it's partially behavioural, she's got into a chronic waking cycle as the initial time 12-1 is always the same. It's a very daunting task going t be knowing you're going to be awake between those time without fail. She has speech and language delay but is normally quite vocal if she's in pain. On Friday night because we didn't jump up the moment she woke, she has a locked stair gate on her door, she tried every trick in the book! (I've had a nightmare, I've been sick, I've got a pain in my leg etc) she even said, I don't know what's wrong with me. I think something is waking her, we have absolutely no problems with her going to bed, I think she is so tired by then that she is asleep very quickly. Ive thought about getting her a new bed that she can help choose.
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