Wrist pain and KT Tape

A frequent manifestation of our Ehlers-Danlos hypermobility is wrist problems... clicking, grating, subluxing (partial dislocations), pain, aches and weakness.  Mine has been persistently bad and I was looking for 'something' to give my left wrist support, without thickness, that my skin would tolerate and allowing the joints to keep mobile... also required was a means to support the joint overnight without my fingers swelling.  Oh, and it had to be yellow!  So, not much to ask!?

Luckily, twitter was a good source of assistance and soon a conversation was taking place with the helpful tweeter @KTTapeUK.  When it was confirmed that a yellow tape was available, excitement rose.  Even better, we were sent a few strips (with instructions, wrist bands, sweets and a sticker) to try out. 

To make sure we knew what to expect, we watched the youtube video which covered KT Tape application where the problem is wrist pain.  This, together with the printed sheet that came with the tape, was sufficient for us to feel confident about applying the tape.

The tape was prepared first... cutting and shaping and, as it was my wrist that was to be the guinea pig joint, an able helper (husband) was co-opted in to help.

Following the instructions carefully, the tape was applied first to the top of my wrist.  Then the other side and, finally, up from the back of my hand onto the lower arm.

Next came the 'test'... would it help?  Would my skin tolerate the adhesive?  Would it stay on?

Answers to all the above = yes!!   Wrist stability was helped, the pain and swelling was reduced.  My skin didn't object to the adhesive (which is unusual!) and it stayed on for a couple of days.  Enough time to allow my wrist to rest and recover... and it is, as I type, PAIN FREE and in the right place.  What a great result.

KT Tape is a useful find and we'll definitely by buying some (I'll be choosing a different colour!) to have 'reserves' for future joint problems... and, having seen the yellow tape, J's agreed to try it next time he gets a persistent ache/instability.

Disclosure - we were sent the tape to try for free.  We were not required to write a blogpost and all the opinions are our own.

Clothing - Raising Awareness

Having seen a tweet from @SquarePegCIC on twitter about hoodies and t shirts using fashion to educate about special needs, some of which are hidden as not every disability equates to being in a wheelchair.  When we took a look at the site there was no yellow option, so J was not interested.  Following a twitter exchange, Lauren at Square Peg Clothing agreed to look into the colour options with her suppliers.  It was great to hear, a few weeks later, that they were able to offer yellow hoodies and J was then keen to try one. 

There are t shirts and hoodies available, in child and adult sizes with various slogans.  J had a look at the website and all that was on offer.  Athough he liked "You can't get my designer genes just anywhere", he chose the message "Somewhere over the spectrum".  This was because he likes the concept of spectra (both electromagnetic and also the 'autistic one') as well as the use of the linking jigsaw pieces. Jigsaw pieces are used by Ehlers-Danlos Support UK (which is another of his diagnoses) in their message about the various symptoms and types of EDS.


In the pictures you can see that J was very keen on the top... in fact, since it arrived, he has worn it every day!   The colour of the hoodie in the pic on the left (with J's pal Peppie in) is the best for demonstrating the shade of yellow it is - a deep sunflower, "happy" colour.

 
Today at his aquatic therapy session, which is held in a special school, J was delighted to get a couple of lovely comments from the staff and his favourite physio particularly liked the shade of yellow saying it had brightened up her day.

Initially, we had talked around the topic of whether J wanted to bring attention to himself with the slogan and came to the conclusion that people stare and question anyway so they may as well have something nice to look at when doing so... it also opens up J's lines of communication as gives him a 'topic' to use as "chit chat" which is part of his Speech and Language therapy.

The photo to the left is J demonstrating the hoodie part...  he says it's lovely and soft and keeps the chills out.   He also likes the 'pouch' on the front (which can be seen best in the photo at the top) as he can snuggle his hands in and keep them warm.

J is a slight 14 year old and we were sent a 12-13 (34" chest) hoodie by @SquarePegCIC   Taking a parent's view, the fabric is lovely and thick (80% cotton, 20% polyester) and washes at 30ºC... amazingly, given J's usually messiness, it hasn't had to be washed yet.  Hopefully, it will still look as good once it's gone through the machine.

Thank you Square Peg Clothing, this top is a great success! 

Disclosure - J was sent a hoodie by Square Peg Clothing, the opinions are our own and we have not been paid for this post.

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.

Tackling Toothbrushing

Spiky therapy cushion for standing on...

Having found toothbrushing to be a problem for as long as J has had teeth (since he was 4 months old)... we have amassed quite a few tips, techniques and tricks to get us through this important daily care task.  It seems we are not alone in finding things challenging when addressing the tantrum inducing time that is toothbrushing.  So, here goes - if you recognise this as a difficult task to undertake, see what we've done and perhaps there's something that may work for you (for a while, at least!)

J says that it is unpleasant brushing his teeth and he doesn't like the sensations he gets.  This is a little odd, given that he is always mouthing objects and uses chewy tubes for deep sensory input.  However, as child with Sensory Processing Disorder,  we have found it's not unusual for him to be a sensory seeker and avoider in the same area!  What matters is to try to get the messages he is receiving to be positive ones for the activity being undertaken.  

So, techniques and methods used for toothbrushing have been:-

• Swaddling will sometimes work - the deep pressure sensation provides a feeling of security and calmness.  This is still a good option (even at 11 years old) after a shower when wrapped in a huge bath sheet as tiredness means he needs to be relaxed... he props himself against the wall and is cocooned.
• Different types of toothbrush and varied flavours of toothpaste - J chooses the brush/paste combination for tooth brushing.  He prefers a dry brush and a low foam toothpaste but also likes a minty taste.
• Firm touching around the mouth area and along the jaw bone prior to beginning the brushing has been encouraged. This is something J does for himself now.
• Positive tactile sensations -  J selects an item to stand on or play with (in his non brushing hand).  He likes a spiky therapy cushion some days, others he will choose a small spiky ball to squeeze in his hand.

This small spiky hand toy can help.

• Deep pressure on his shoulders whilst he is brushing - this used to be a favourite "only Mum can do it right" solution but it was good whilst it worked!
• Humming/singing along to the noise of the electric toothbrush - this seems a good distraction technique but works best when not too tired.
• Doing it together - J likes to mirror what someone else is doing whilst brushing... it helps him realise where/what/how he should be brushing.
• Using an app - there are some good apps to accompany brushing that indicate time and which teeth to brush.  Points are earned and this engaged J for a while - he prefers one called Teeth Timer.
• Visual sand timer countdown as to how long is left of the toothbrushing - allows J to realise there is an end in sight!
• Tick chart - this is completed morning and evening and a reward for a full week of ticks (two misses, not on the same day, are allowed). J chooses at the start of the week the reward he is cleaning towards.

Son's TEETH chart

All of the above have been a success at one time or another.  Many are used in combination.  There is no simple answer in this household and the surest thing we know about toothbrushing is that it's not the 2 minute task that many others have... we have to allow about 30 minutes.  During this time there is much discussion, briefing, kajoling and insistence.  It's not a straightforward task and it takes a great deal of patience, which I do not always have in sufficient amounts, so it is a pretty stressful way to start and finish each day.  

ADVANCE WARNING: We are aiming to cover handwriting in the next blog entry... although it will, doubtless, require more than one post as it's a BIG topic here.