Billy celebrates his 30th birthday and more than FIVE years in his adjustable KIT seat!
We first met Billy in 2010 when he was 24 years old. Billy has spastic quadriplegia Cerebral Palsy and moderate learning disability. He has been known to his regional wheelchair service for more than 25 years. He is fully dependent upon a wheelchair for all of his mobility but is not an independent wheelchair user. Billy's hypertonus affects all limbs was the single biggest problem in finding a suitable "off the shelf" seating solution. Billy had had an Intrathecal Baclofen (ITB) Pump fitted, but this had yet to reach optimum therapeutic levels when he began using his KIT seat on 13th January 2011.
In Billy's existing seating system, he showed a moderate degree of left side flexion in the trunk combined with pelvic obliquity and rotation (up on left and forward on left). Billy was unable to achieve mid line position with his head. There was a high degree of pressure exerted onto the right hand side lateral which caused Billy pain and discomfort. The left hand side lateral did not achieve adequate support as it could not be set so high into the region of the left axilla in case Billy developed pressure damage. The pressure damage normally happened throughout the day as the degree of left hand side flexion increased in relation to increased tone, noxious stimuli and fatigue.
• A brief assessment of Billy in supine lying and supported sitting demonstrated that there was some correction in posture available - extension of the spine and reducing pelvic obliquity
• Overcorrection of the pelvis demonstrated that the degree of left side flexion increased thus leading to poor head position
By accommodating Billy's obliquity using the castellated foam cushion, along with some correction from the Pelvic Cradle, a more neutral pelvic position was achieved. The leg guides accommodated Billy's windsweeping, helping to maintain the position of his pelvis. The complex laterals - the right one placed vertically, and the left one placed horizontally - helped Billy to sustain a more midline posture and better head position. Subjectively Billy was able to express that he felt safe and comfortable. There was also noticeable difference in the degree of extensor thrusting that is normally evident in the lower limbs.
Billy was formally issued with his KIT seat in January 2011.
Reviews March 2012 and August 2012
Billy was reviewed in March 2012 as, since KIT issue he had a rollercoaster ride of ill health, hospital stays and dramatic weight loss and regain. You can see how thin Billy is in the photograph above.
However, at this review, Billy had made a good recovery, and the footplates were able to be adjusted to a more midline position.
One problem noted (as seen in the photograph below) was Billy’s head falling back into extension, and exacerbating his ATNR. An additional linked head rest bracket was manufactured by Leckey and fitted in July 2012.
A further review took place in August 2012, when no further adjustments of the KIT seat were needed. Billy’s carers reported that the modified headrest maintained Billy’s head position really well, and that there have been no incidents of saliva aspiration since it was fitted in July 2012. Apart from a replacement footstrap repair, there have been no other repairs required since January 2011.
Billy’s feet have remained supported in the more midline position.
The picture on the right shows the additional link in the headrest support and Billy’s improved head position.
Review November 2015
After such a turbulent period in Billy’s health, everything settled down with the exception of the spinal catheter for the intrathecal baclofen pump repeatedly blocking. Following a review at his local Pump Clinic along with the opinion of a neuro-rehab consultant, it was decided to treat Billy with an intrathecal phenol block. This would be combined with the eventual “turn-off” of his ITB Pump. Trial was completed on 3rd November 2015 with the actual treatment completed 4th November 2015. Billy’s wheelchair therapist saw him approximately three hours after the phenol block along with the neuro-rehab physio, the neuro-rehab consultant and Billy’s mum. Everyone was astounded with the change in Billy's muscle tone throughout. On reassessment, the team was able to gain 90 degree passive hip flexion and left and right hips. Billy’s trunk could be held in midline with no dramatic pull down to his left side. Billy was able to actively place his head in mid line and maintain a neutral position which also allowed him to flex and move his head forwards away from the head rest. Adjustments were made to the KIT to accommodate Billy’s improved position of legs and feet and also head. However it was agreed to review Billy again in four weeks to check the headrest and footplates.
Review December 2015
Billy’s ITB Pump has now been turned off and he is no longer taking any additional oral baclofen. He is well, bright and alert. There has been a dramatic difference in Billy’s overall hyper-tonicity. He has improved sitting ability, alignment, ROM, upper limb function.
Billy and his family had agreed to take part in a research project looking at the effect of postural support in seating on quality of movement, effect of unintentional movements, and abnormal reflexes.
Unfortunately due to a number of factors including Billy’s intermittent ill health and staffing pressures at his wheelchair service, the data was not able to be collected, and the research has been shelved for the time being. This is very frustrating for Billy’s therapist, but demonstrates how difficult formal research is with vulnerable clients like Billy. It also shows how important the Case History information becomes as a way of generating evidence.
Despite not being able generate “formal” evidence, Billy’s therapist has made a number of observations:
• Billy’s posture and body shape changed several times due to the ITB pump, repeated bouts of illness, and now with the phenol block;
• Had Billy been using a moulded system as originally prescribed, he would have needed remoulded several times in the years that he has had his KIT seat;
• As it was, Billy’s KIT was adjusted to meet his changing posture, which although time-consuming, the cost benefit outweighs the negatives
Most recently she adds, “The beauty of the KIT is that we have been able to adjust it to allow continued support and comfort for Billy without needing to consider a new seat or/and change of equipment. Once again I reflect back on our seating options prior to the provision of the KIT. Billy would have been prescribed a moulded seat insert to manage his posture and the demands that he places on seating. We would have had to look at an urgent supply of a seat perhaps along the lines of passive seating. If not in stock this may have taken up to 6 weeks to supply / fit which would have left Billy very uncomfortable in a moulded insert that would not have supported his most recent posture following Phenol Block.”
Billy’s mum also commented that the covers were easily laundered and therefore she could keep the KIT clean.
The team collectively feels that Billy has tested KIT to its limits, and that it has survived the challenges!