Sarah got in touch with our Sleep Service at a point when she felt that her family had run out of options to help their son Josh to get a good night’s sleep. She explains how our Sleep Service helped them to try out new techniques and how it has opened doors to accessing further support.
Sarah told us that fifteen-year-old Josh has been struggling with his sleep for a couple of years. He finds it difficult to fall asleep at night. He often lies awake for 2-3 hours so he doesn’t fall asleep until the early hours of the morning, leaving him feeling very tired.
During lockdown this hadn’t been such an issue as he was able to lie in in the mornings and catch up on his sleep. But with a return to school this hasn’t been possible.
The family consulted their GP and school nurse and rigorously followed advice on sleep hygiene. Josh got plenty of fresh air and exercise and switched off electronic devices before bed, but nothing seemed to make any difference. Josh was also given medication including sedatives and anti-histamines, but again with no improvement.
Josh was becoming increasingly tired, anxious and frustrated. He was understandably cross that although he was trying everything suggested, it wasn’t making a difference. The lack of sleep and Josh’s mood was having a big impact on family life.
As Josh is on a pathway to an autism diagnosis his school nurse referred him to Cerebra’s Sleep Service – which he was able to access even though his diagnosis has not been confirmed. The family were put in touch with one of our Sleep Practitioners, Carwyn Tywyn, who worked closely with the family to try to find a solution.
Sarah told us: “Carwyn was fantastic. He had a really friendly approach and made sure that he fully involved Josh in the process, consulting him and explaining things clearly”.
With Carwyn’s support the family tried Chronotherapy. Carwyn explains “This involves shifting the child’s sleep time forward all the way around the 24-hour clock until the cycle comes around to appropriate evening sleep time. Chronotherapy is a demanding process both for child and parents alike, because it typically lasts for two weeks. For most of the first week, the child is awake during the night”.
Despite the toughness of the technique Josh rose to the challenge and followed the plan to the letter. The system did make a small difference – the time it took Josh to fall asleep reduced down to 1 and a 1/2 – 2 hours. This was largely due to the exhausting nature of the therapy. Since returning to school Josh’s sleep pattern has slipped back to the previous routine.
The second technique the family tried was Phased Advancement. Carwyn explains: “This involves bringing the child’s sleep routine very gradually earlier (typically 15 minutes at a time. Unfortunately, this had no effect at all.
Although Josh’s sleep is yet to improve, Sarah told us: “I view the whole experience of working with the Cerebra Sleep Service very positively. It allowed us to explore ideas we wouldn’t otherwise have come across and it has opened doors to further help. Because Josh has tried all of these options, he is now eligible for a paediatrician appointment as well as a referral to CAMHS to tackle underlying anxiety issues. We are hopeful that there is more that can be done to help him and we can also rely on Carwyn’s on-going support. I would absolutely recommend Cerebra’s Sleep Service to other families”.
If you would like support with your child’s sleep, take a look at how our Sleep Service can help.
My son who suffered anxiety mental health issues and not being able to sleep at night was later diagnosed with Under active thyroid and diagnosed at the Age 0f 9.He is now age 13 and still has the same issues especially with sleep, but an improvement on what he was.Please check kids thyroid simple blood test.
Ha I g investigated sleep problems in relation to our son’s troubled sleep, I would suggest the child has sleep study carried out at a sleep clinic.
The problems described sound more like our son’s diagnosed circadian disordered sleep condition of ‘Delayed Sleep Phase Syndrome – condition where, as the name suggests, one’s sleep phase is simply delayed due to the body clock’s mechanism for releasing g the hormone responsible method for maki g one feel sleepy (melatonin) regularly being released much later than in the general population.
Some success has been achieved in some patients by administering oral melatonin some time before the desired sleep time , or use of a blue light in the early morning, or a combination of both.
However, reports by neurotypical adults suffering from circadian disorders who were able to express how they feel following treatment, they frequently describe that although treatment helps them to meet the demands of their job, they do not feel that they are living, often feeling tired and more depressed than before.
Therefore, when considering children having impaired brain function and little ability to e press or convey the complex emotions and feeling that accompany a circadian disorder and its treatment, one needs to reflect, very carefully, on the aims and outcomes of the treatment, but to understand in whose interest it is being administered.
In our own child’s instance, we have altered our lives to accommodate his sleep disorder.
We found that he did not respond well to melatonin, which created other more challenging behaviours, nor to light therapy. When we analysed why we were trying to change his sleep pattern, the answer was to fit in with other’s schedules – school, social services, day centres etc.
Although these appear at first glance to be reasonable aims, knowing that the treatment could well have made him feel worse and that it was only being provided, in effect to make him ‘compliant’ to other people’s schedules, the meeting of which really were of no great benefit to him, indeed in meeting them, it seemed to make matters worse, we were obliged to conclude that the treatment was NOT in his best interest and that life needed to be organised around his needs – rather than to make his life fit others needs.
Having realised that we worked towards organising life to those ends.
We won a Tribunal hearing to allow him a much later start to his day a d to adjust that time to account for the differences between GMT & BST – as the body clock is unaware of those differences.
However, other difficulties arose when he became an adult.
Adult social care day-centres operate much the same hours as school, but with less flexibility – thus making it a facility he could not reasonably access.
It is the case that in accommodating our son’s disordered sleep, we have had to make significant adjustments to the way we organise our lives – not least that we no longer receive support from adult social care whatsoever.
I believe that despite the hardship our choice of action has imposed on us, it is has ultimately been less stressful, to ourselves and to our son, than had we continued trying to force our son to meet the schedule demands of others – at least these days we can suit ourselves.