Sleep Solution Trial

Now, I know the next blog entry on here was going to be about handwriting but it's looking to be a bit of a long job to post all of our experiences in that area.  It will happen, just in a few more weeks!  Instead, it seems a more pertinent blog is about something that's very new (and exciting) to us.

Those that follow us on twitter will be aware that we've been given a sleep solution/system to trial for J.  He has never slept soundly throughout the night and, recently, daytime tiredness has been way more of a problem.  He falls asleep in the car, is lethargic and has to continually rest when we are out and about.  Now,  how much of this is down to stamina problems as a result of his Ehlers-Danlos Syndrome, and how much because he doesn't truly rest at night is anyone's guess.  But the one thing we do know is that the combination of the two makes for a tired chap.

We've known for some considerable time that J's dyspraxia and sensory processing/integration problems mean that he has difficulty with proprioception (basically the body's innate ability to sense where its bodyparts are)... and that this is even worse when he can't see where his limbs actually are.  So, nighttime, in darkness he flails around to seek feedback which allows him to create a mental map as to where he actually is.  This means that he will move around constantly - calling out sometimes, hitting his legs/head against the wall, sleeping in odd positions (we've found him with his legs UP the wall) and needs to be re-covered by his bedding at regular intervals.  We have weighted blankets which are quite good in the winter (when the additional temperature they provide is not so much of a problem).  We have a bedtime routine that is followed and he sleeps in a room with a blackout blind and has curtains with a blackout lining.

As I said, I have been suspicious for many years that J does not actually have deep sleep ever.  The excessive tiredness seems to point to this too.  Hence, it was suggested by J's community physiotherapist that he tries out a sleep system.  An appointment was made for July 18th for us to learn about and set up the system and so the scene was set.  This Monday's appointment was met with controlled excitement by J and we were introduced to the concept.

So, what is the sleep system we are trying out?  It's called  Symmetrisleep and is a series of overlays for J's normal bed.  There's a lower sheet that has grid markings on and has a brushed texture, some supports (which are L shaped plastic, covered in padding, with velcro strips which attach to the grid undersheet), a thicker overlay which feels foam like and has an open weave top and finally a loose 'fitted' sheet that regulates body temperature.  We set up the system without the wedges/supports, got J to lie on it and then put in some small chest supports.  Next a large leg support was put into place... and voila! 'twas ready for inaction.  J was particularly impressed to be reminded that his bed was now reminiscent of Homer Simpson's couch indentation and was rather keen to give it a go!

It is early days... or rather nights, but so far the signs are promising. Monday night J couldn't wait to tell his Dad all about the new bed, was desperate to get to bedtime and went off to the land of nod with not a whimper.  Such was his quietness that I had to keep going in to check on him... and so deep was his sleep that we were able to take photos of him (using a flash) without him even stirring!  He did not call out in the night, he did not wriggle and he kept his bedding in place.  Of course, he was still up nearer to 6am (albeit AFTER) than I would like but I know I can't have everything and I did get 5 hours of unbroken sleep.  Last night was similarly peaceful, the bed clothes again remained in situ and there was another too close to 6am start to the day.  However, last night I had 6 hours of unbroken sleep. 

I have been in touch with our lovely physio to tell her how each night has gone and we are both now keeping diaries for the inevitable battle that will come should the decision be made, at the end of the trial, to apply for funding for this system for J.  An astonishing fact, which we hope will not be a one off, is that we went out with friends yesterday to a country house garden.  For the first time ever, J was able to keep up with his pals, play hide and seek, and generally wander about for the whole 4 hours without needing any more rests/breaks/sitdowns than his pals!  Can this continue?  Only time will tell.

Update - 8.8.11

The sleep system definitely had a positive impact on J's sleep quality.  After one week, he started to wake after 7am.  By the end of the three week trial, he seemed to be waking between 7.30 and 7.45am.  He loved the system, said it was cosy and gave him energy.  During the trial, we had to re-locate the chest supports as he'd grown but it was a simple task and easily achieved. 

Now we have no system.  We will continue to document J's sleep pattern and energy levels.  If all goes to plan, then a funding panel will be presented with the data and make a decision at the end of August.  All we are hoping for is continued, good quality sleep. Fingers crossed!

Update - 15.8.11

Sadly the removal of the sleep system has meant a week of restless nights and early mornings.  I have maintained the Sleep Record sheet and it clearly shows J has returned to his pre-trial wakefulness patterns.  This morning he woke at 6.05am compared with 7.30am just a week ago.  During the last week, J's been complaining of tiredness, has been moody and had a number of meltdowns.  Much yawning and shouting has gone on.  I have taken a picture of him sleeping in a twisted position, with one foot on the floor.  He's also had back pain and required massages to attempt to alleviate symptoms.  

There is good news, however, as all the noted changes in the last week add to the case that the system worked for J and it should make the case presented to panel stronger.  Now to await the decision before moving on to the next 'phase'.  

October Update

After much waiting, a delay in the case going before the 'panel' and so on, we learnt that, although the case was great, it was not something that fell within the remit of funding.  Naturally, we were pretty frustrated by this point.  However, our lovely community physio had discussed J's case at a staff meeting and, following this, we were provided with an air mantle and oversheet which form a major part of the system.  Then it was a case of procuring the remaining system components - wedges, pads and the undersheet.  Cutting a long story short, the small wedges and pads have been provided on long term loan and for the remainder we have placed a personal order with the company making use of some saved funds from J's Disability Living Allowance.  It is hoped that the complete system will be with us by the end of the month.  J cannot wait - he is VERY excited.

Follow up

We have the system. J loves it. Comfy, easily adjusted and cosy too.  Could do with another bamboo sheet as it is something of a challenge to 'turn around' the one fitted sheet we currently have - we don't have a tumble dryer and there aren't quite enough hours in the day to dry it in the wintry weather.... PLUS J's spotted some pillow "options" in the price list he likes the sound of!  We'd better get saving.