Tag Archives: Sleep

Cerebra Sleep Conference – Sleep in children with brain conditions

Our one day conference on sleep in children with brain conditions will disseminate the findings of recent sleep research and consider the implications for parents, carers and professionals.

Date: Wednesday 28th June 2017
Time: 9.30am – 4pm
Location: Copthorne Hotel Birmingham, Paradise Circus, Paradise Place, Birmingham B3 3HJ
Cost: £20

 

 

Keynote Speaker:

  • Dr Cathy Hill. Dr Cathy Hill is an Associate Professor in Child Health at the University of Southampton and Honorary Consultant in Sleep Medicine at Southampton Children’s Hospital where she has built up a multi-disciplinary children’s sleep disorder service. The Southampton service provides diagnostic and therapeutic services across the south of England and further afield for rarer conditions

Other Speakers:

  • Dr Andy Bagshaw, Reader in Imagining Neuroscience at the University of Birmingham and Scientific Director of the Birmingham University Imaging Centre. His main interest is in developing and applying non-invasive brain imaging methods to clinical and behavioural neuroscience, with particular emphasis on understanding how the brain is affected by sleep and epilepsy.
  • Dr Anna Joyce, Research Associate in Psychology at Coventry University. Dr Anna Joyce is interested in the effects of sleep on learning and cognition and what can be done to enhance sleep in order to improve educational attainment for children. She is also interested in cognitive development in children with developmental disorders and whether sleep problems, which are common in these children, could be at least partly responsible for some of the cognitive difficulties that they face.
  • Dr Caroline Richards who is leading Cerebra funded research at the Cerebra Centre for Neurodevelopmental Disorders – University of Birmingham. The Centre focuses on the problems experienced by children who have intellectual disability, autism spectrum disorders and genetic syndromes that are associated with developmental delay. Cerebra funded sleep research is trying to understand why sleep problems occur and help families find solutions to them.
  • Claire Varey, one of Cerebra’s Sleep Practitioner. Claire is a trained nurse and as a Cerebra Sleep Practitioner, supports parents with common sleep disturbances such as difficulty settling; waking early in the morning or during the night and not being able to return to sleep; sleep-walking/sleep terrors and nightmares; sleeping alone.

The conference will launch new information resources that the our Sleep Team, together with the Cerebra Centre for Neurodevelopmental Disorders – University of Birmingham, have developed to assist parents to manage their child’s sleep disturbance.

All of our information resources are covered by The Information Standard, a recognised quality mark which indicates that our information is accurate, accessible, impartial, balanced, based on evidence and well-written.

Sleep Walking to Success

The walkers before they set of

The walkers before they set off

On Saturday 6th May we held our second walk to the top of Pen-y-Fan in the Brecon Beacons to raise vital funds for our Sleep Service.

Following a safety briefing from the fabulous mountain rescue team, our brave walkers grabbed a glow stick each and, with an overwhelming sense of camaraderie, made their way to the summit!

This year, we were also joined by the Côr CF1 choir who not only braved the walk to the top of Pen-y-Fan but then entertained everyone with a few songs at the top. They were in fine voice, even after the trek up the mountain!

So far, this year’s Sleep Walk has raised well over £3000 and this will help fund our Sleep Service which aims to help families with children with brain conditions get a good night’s sleep.

We would like to say a big thank you to everyone who took part in the walk and for joining us on our journey to help families discover a better life together.

An End to Sleepless Nights

Our Sleep Service gives support to families when their child is having sleep difficulties. Sleep Practitioner Catherine Stone recently helped a family experiencing sleepless nights and mum told us  how Catherine’s support had helped them.

“Thanks for helping us to get our 5 year old son back into a good sleeping pattern.

M has Tuberous Sclerosis with Epilepsy and Autism. He was always a great sleeper until his epilepsy medication stopped him sleeping. He began waking several times at night and wouldn’t go to bed. Catherine gave us advice and support and kept in touch until we had him sleeping peacefully again. Then we moved house and M began having the same problems again!

Catherine came to see us again with more advice and support and M is now thankfully sleeping well again from 8pm to 7am. What was helpful along with the advice and support was Catherine’s belief that our child could sleep well, that we didn’t have to accept the sleepless nights. Many parents think it is hopeless and accept it. But I can handle the challenging behaviour so much better if I’ve slept well and M needs to sleep too, his behaviour is better if he is well rested”.

Catherine explains “M’s difficulty settling and night waking was having a big impact on mum and dad and on family life. M’s problems re-occurred when the family moved house so we looked at trying to get M’s bedroom similar to his old one. We also developed a routine to gradually remove mum and dad out of the bedroom.”

If you would like some help from our Sleep Service you can find out more here.

Help with night waking

Mum Tammy was struggling to cope with her daughter’s night waking. Our Sleep Practitioner Claire Varey describes how she gave them some practical advice and support and Tammy explains the impact this has had for her family.

 

“I first had contact with Tammy back in July 2016. Tammy had completed one of our sleep questionnaires and a sleep diary which gave some basic information about her daughter’s sleep habits. I arranged telephone support for Tammy and we discussed the issues that her daughter, Amelia, who was 4 at the time, had with sleep.

Amelia has Autism and likes the things she likes, but it can be very difficult to get her to engage in any activities or interests if she doesn’t want to. There had been some progress, but Tammy was finding it difficult with the late nights, spending a long time settling Amelia and the continued night waking episodes. Amelia was also having day time naps and was quite reliant on her tablet.

We discussed how these things may be impacting on her and agreed some changes to their routine that may help with settling at night – and hopefully over time improve Amelia’s night waking. We identified that having a bath as part of Amelia’s bed time routine may be stimulating her and so I suggested moving it to earlier in the evening. I felt it would also help to introduce some calming activities, supper and massage before bed.

For Amelia’s bedroom we spoke about using the relaxing scent of lavender to help Amelia associate her bed with being calm and sleep. Also the introduction of a red light would help her understand that it was time for sleep and, if she should wake at night, the red light and the scent of lavender, would help her understand that it was still time for sleep.

The other important factor to look at was the day time nap. We spoke about trying to reduce the length and time Amelia slept – this was especially important as Amelia would be starting full time school within the next 6 months.

We keep in touch via text and although progress has been up and down, there has been an overall positive improvement. Amelia is getting more sleep, she has dropped her day time nap, is settling well and has a better quality of sleep. This is also having a positive effect on her mood and concentration”.

Tammy told us the impact the support Claire has given her has had on her and Amelia:

“From my first telephone conversation with Claire I felt hugely positive about the task that lay ahead. The ultimate goal was to gain more sleep for Amelia and ourselves but for now any step no matter how small would make a huge difference.  Understanding the basics of how sleep works was a massive eye opener. It was really interesting and helped answer some questions I didn’t really know I had until Claire explained sleep patterns to me.

At the end of our first phone call I was yawning my head off so knew I was onto something good.

With Claire’s help we managed to identify that a bath actually stimulates Amelia’s body and so has the reverse effect. Claire advised me to do something with Amelia to get rid of excessive energy for 10 minutes; to use lavender in the bath with some in her room, delta wave music and a red light in Amelia’s bedroom. I felt that the light and the music didn’t do very much but the lavender helped a lot. Very quickly I noticed the time it took Amelia to switch off went from between one to two hours to between 5 and 35 minutes.

When we first started our journey Amelia was having naps after school so Claire explained about not letting it go past an hour, which we didn’t always do especially if Amelia wasn’t right in herself. Since actively encouraging less naps Amelia’s body has naturally adjusted and she now has no naps in the day.

Claire is amazing she listens and is genuinely interested. She regularly checks how we are doing and even though we have never met she has been a fairy godmother for us. Claire is happy to go with what worked for us, never stressing that we shouldn’t be in bed with Amelia which we still are and allowing us to set our own goals.

In the past few weeks Amelia has started going to school until the end of the day and is now in bed between 8pm and 10pm. She still stirs in the night but isn’t awake as often as she was before.

Amelia seems to be learning more and I am sure a lot of this is down to her brain not being as tired”.

If you’d like some help from our Sleep Service you can find our more here.

Behavioural interventions for sleep problems in people with an intellectual disability: Do they work?

This is a summary of a recently published academic paper. Sleep problems were identified as one of the least well studied problems in the lives of people with an intellectual disability. It is an issue that affects the health and well-being of those who experience them, and also that of their parents/carers.

Download research summary pdf

Sleep Practitioner Helps Nelli

Nelli and Iveta

Nelli and Iveta

Our Sleep Service gives support to families whose children are having problems with their sleep. Claire Varey, our Sleep Practitioner in the north of England, shares some advice that recently helped a family she worked with.

“I recently worked with Iveta, Lucie and Nelli to  address a sleep disturbance that was affecting the whole household. Nelli is 4 years old, she has Autism and doesn’t have verbal communication. Nelli is very active, ‘always on the go’ and getting her to settle at night time took hours. She was finally falling asleep between 12am and 2am.

Nelli’s mum, Iveta,  had difficulty waking Nelli up in the mornings to get her ready for school.  She was then falling asleep during the day which further compounded the issue. Iveta doesn’t speak much English so when she got in touch asking for help,  I arranged to have a telephone consultation with Iveta’s other daughter Lucie who could translate for her.

During our call I was able to provide information to help Iveta understand Nelli’s behaviours. I suggested ways to help her calm and reduce the stimulation in the evening, which would reduce the time it took Nelli to fall asleep. Between us, we worked out a programme that Iveta felt happy she could follow each night, therefore helping Nelli learn how to fall asleep well.

Nelli was having difficulty understanding when it was an appropriate time to sleep and so we discussed ways in which Nelli could use signals to help her brain start to calm in the evenings. Firstly, I encouraged Iveta to get Nelli outside in the afternoon’s as much as she could and to add that into her daily routine. Movement is important and an excellent way to help release tension from the day, but I informed Iveta that too much jumping and bouncing too close to bedtime, or doing these activities in the bedroom, would only keep Nelli’s brain active and reduce the chances of her falling asleep.  Also it appeared that Nelli may have associated her bedroom and bedtime as an extension of playtime rather than it being a calming and peaceful space where she should be sleeping.

We identified that bath time was quite stimulating for Nelli, so I suggested that she had her bath earlier to give enough time for her to calm down before bed.

I also suggested a later bedtime as Nelli was not showing any signs of being tired at the time she was put to bed. With this we looked at the hour leading up to bedtime, to introduce a calm activity for 15 minutes, such as massage, then offer some supper (certain foods promote sleep) and then up to the bedroom. I offered advice about using red light, dark room (blackout curtains/blinds very useful) and then to avoid too many toys or bouncing on the bed as these can distract and stimulate.

I arranged follow up telephone support, where we had could iron out a few issues, such as Nelli starting to wake and wanting to play on her tablet. I suggested using an object of comfort to replace the tablet, so that Nelli could make a positive association which was more appropriate than using the tablet.

I also suggested that they speak with school to reduce or stop Nelli’s afternoon nap, as this  could also be having a negative effect on her settling at an appropriate time in the evening.

Nelli is now settling between 9-10 pm, waking easier in the morning, her behaviour has improved through the day, her aggression has reduced and she goes to sleep much calmer too.

Iveta is happy with the information and support she received and knows she can get back in touch if she needs any future support. She would also like to thank Mrs Moore in Broadgreen Primary School who helped to put her in contact with Cerebra”.

We have a team of sleep practitioners who can offer help and advice on a wide range of sleep issues.

Sleep and Head Banging

Child crying in a cotHead banging is just one of the issues that our Sleep Practitioners can help families with. It’s a difficult behaviour to eradicate because it generally happens while the child is sleeping. Often it’s only possible to manage the behaviour rather than being able to remove it entirely.

Often it’s the noise that the child makes while head banging that’s the problem, especially for the rest of the family.

Some strategies that may help include introducing a different sensory input, like white noise music for example. Also, if a child is banging their head against the wall, you could consider moving their bed away from the wall. Or, if your child is banging on the bed frame or head board, consider putting the mattress directly on the floor and removing the frame or board.

Sarah Coldrey, our Sleep Practitioner for the South West recently worked with a family who had a child who was head banging on his mattress. He wouldn’t use a pillow and, because his parent’s room was just next door, it was making enough noise to disturb the their sleep. Sarah recommended changing to a memory foam mattress or topper, with the hope that the mattress would be softer and potentially reduce the noise.

A few weeks later, the family told Sarah that they had purchased a memory foam mattress straight away and they had not heard their son head banging since.

Find out more about our Sleep Service and contact us for advice.

Teenage Sleep

sleeping-boy-1024x683Back in 2015, Sarah Coldrey, our Sleep Practitioner in the South West met with the Hunter family from Brixham.

The Hunters have three children and their eldest son, who has ADHD was having sleep issues. The fifteen year old wasn’t falling asleep until 5am most days and was missing a lot of school.

She recommended a technique called Chronotherapy which involves altering bedtimes each night. Instead of moving the bedtime backwards gradually as you would with young children, which takes a long time to do and isn’t as successful in older children, you move it forwards by a few hours each day.

Here is an example of how the times can be moved:

1st night: sleep at 4 a.m., wake at 12 midday

2nd night: sleep at 7 a.m., wake at 3 p.m.

3rd night: sleep at 10 a.m., wake at 6 p.m.

4th night: sleep at 1 p.m., wake at 9 p.m.

5th night: sleep at 4 p.m., wake at 12 p.m.

6th night: sleep at 7 p.m., wake at 3 a.m.

7th night: sleep at 10 p.m., wake at 6 a.m.

Sarah was reluctant to suggest this technique initially because of the need to monitor the times closely and consistently. However, the family were willing to try anything that could have a positive effect on their son, who had exams coming up.

Sarah followed up with the family a couple of weeks later and was delighted to hear that the technique had been successful and the teenager had been sleeping from 10pm-6am everyday for a week and had not missed school for a whole week, which was the first time in a long time.

Fast forward to eighteen months later and the now seventeen year old teenager is still sleeping well. He currently sleeps from 11pm-7am and has slept well since the programme was introduced. He goes to college now and doesn’t miss classes.

When Sarah caught up with the family she was delighted to hear that the family have still been experiencing success from implementing the programme. Lee, the father plans to implement the same plan with their younger son who also has ADHD and struggles to settle. Lee said he would definitely recommend the technique for children that aren’t falling asleep until the early hours and also commented that the programme gave him chance to spend time and bond with his son.

Find out more about our Sleep Service and contact us for advice.

 

Sleep Forum Addresses Sensory Difficulties

sleeping-boy-1024x683On the 10th November, Sleep Practitioner Claire Varey held a sleep forum at Burton Street Foundation, Sheffield.

Claire, who is Cerebra’s Sleep Practitioner for the North, addressed the issues of settling, night waking, early rising and difficulty sleeping alone. There was also opportunity to look at ways to structure an effective bed time routine which can help to tackle some of the issues which are commonly highlighted by parents.

As well as the sleep presentation, there was also a sensory presentation by Jo Roberts who works as a physiotherapist at Ryegate Children’s Therapy Unit in Sheffield. It looked at the impact sensory processing issues can have on children with additional needs ability to settle and get ready for sleep.

When discussing difficulties with sleep, sensory difficulties was a topic that was frequently mentioned by parents and carers, so the response to the forum was high.

The feedback following the event was overwhelmingly positive and also highlighted the need for a longer session covering information on sensory difficulties.

One parent said on the day ‘everything that Jo spoke about was like she was describing my son, she hit the nail on the head. I am really looking forward to taking the information I have learned today and getting started as soon as I can’. Another parent noted ‘the combination of sleep information backed up by the sensory presentation has given me lots to think about and how I can alter the small things that will hopefully make the difference in helping my daughter get more sleep’.

Burton Street Foundation provided a fantastic venue and parents had the opportunity to have a welcoming cuppa and cake, whilst also being able to chat with our colleagues from Contact a Family and Core Assets, who had stalls at the event too.

Introducing a calming bed time routine

baby-1151351_1920Our Sleep Service helps families to get a good night’s sleep. One of our Sleep Practitioners, Claire Varey, explains how her advice on establishing a good bed time routine helped a family to make some positive changes:

“I recently worked with a family whose little boy is 3 and has a diagnosis of Autism. He struggles with night waking and settling without his mum. Ben was falling asleep in mum’s bed each night and they would then move him to his own bed once he was asleep. He would wake most nights and have difficulty getting back to sleep without mum. He was also sleeping for long periods through the day at nursery.

We spoke about the benefit of using a calming bed time routine and, as mum wanted Ben to stay in his own bed, that the routine should finish in his bedroom, rather than in her bed. We discussed his current bedtime and identified that having a bath before bed was actually stimulating Ben. I suggested that they move it to earlier in the evening, so that he had time to relax again before bed.

Ben responded well to visual prompts, so we agreed to introduce a visual timetable to the new bedtime routine. We spoke about starting the routine an hour before mum felt he fell asleep, turning off the TV to reduce stimulation to his brain, and choosing some calming activities he could do for about 15 minutes. As a visual aid, we thought about getting a box with some activities in, which is only to be used at bedtime. Following this, I suggested offering a supper of banana and warm milk before taking Ben to the bathroom to brush his teeth.

I felt it would be useful to prepare Ben’s bedroom, using blackout blinds and a red night light, a calming smell such as Lavender and playing some calming background music. Also, once Ben is in the room and changed into his pyjamas, to offer some massage, so that he could relax further. Hopefully by this time, Ben should be a lot calmer and starting to feel tired. He also enjoys having a story read by mum, so ideally this should be a short and familiar story, and as the routine gets repeated in the same order, he will come to understand this is near the end of his routine.

We agreed that Mum would then stay with Ben until he falls asleep as the new routine starts, with the aim of gradually moving towards more independent sleep once the routine is firmly established. When he wakes at night, as the light, smell, and sound are all the same as when he falls asleep, it can help him recognise this is still night time.

After a few weeks, mum told me that since implementing these ideas Ben’s nighttime waking has reduced and he is better able to fall back to sleep when he does wake. Mum also spoke to nursery about not letting him sleep for so long or as late in the afternoon. As Ben was achieving longer sleep through the night everyone was getting more sleep and Ben’s mood was now much happier through the day. The whole family can now enjoy their time together”.

If we can help you with a sleep issue get in touch with us on 01267 244210 or e-mail us at sleep@cerebra.org.uk.