We are all exhausted!
Even after a lovely weekend away celebrating my birthday, first day back and we are straight into the physio therapy regime again.
Physio is different now very than it used to be before, we now see clear gains, and that in itself is very motivating for me. It is however very tiring for little Toby and sometimes he just wants to crash out and chill with his mates and brother.
I am trying to think of all ways to add interest to his therapy and make his exercises more fun – this is my challenge. I spend all my waking time thinking of how we can make it all more fun.
All the equipment that we have bought is the backbone of his therapy regime, especially the treadmill, total gym, ijoy machine, and his trampoline. The smaller extras add interest, but it is these items that make up the major players.
The surgery was only the beginning, the therapy road that we are now on stretches far and long into the distance, it is awe inspiring to see the gains he is making, but like another family I recently spoke to who have also had SDR, these gains are not huge, and to the inexperienced eye might seem insignificant, but it is when you look at his gains since the operation that you realise the magnitude of the changes he is experiencing.
One of the stumbling blocks in the UK with regard to SDR being introduced is that it is difficult to measure outcomes on what is known as a GMFCS test. This is a standardised test (Gross motor function classification system) that is used to classify children with cerebral palsy and put them in a grading system to quantify the level of their manual abilities.
Between 6th and 12th Birthday
Level I Children walk indoors and outdoors, and climb stairs without limitations. Children perform gross
motor skills including running and jumping but speed, balance, and coordination are reduced.
Level II Children walk indoors and outdoors, and climb stairs holding onto a railing but experience limitations
walking on uneven surfaces and inclines, and walking in crowds or confined spaces. Children have
at best only minimal ability to perform gross motor skills such as running and jumping.
Level III Children walk indoors or outdoors on a level surface with an assistive mobility device. Children may
climb stairs holding onto a railing. Depending on upper limb function, children propel a wheelchair
manually or are transported when travelling for long distances or outdoors on uneven terrain.
Level IV Children may maintain levels of function achieved before age 6 or rely more on wheeled mobility at
home, school, and in the community. Children may achieve self-mobility using a power wheelchair.
Level V Physical impairments restrict voluntary control of movement and the ability to maintain antigravity
head and trunk postures. All areas of motor function are limited. Functional limitations in sitting and
standing are not fully compensated for through the use of adaptive equipment and assistive
technology. At level V, children have no means of independent mobility and are transported. Some
children achieve self-mobility using a power wheelchair with extensive adaptations.
Distinctions Between Levels I and II
Compared with children in Level I, children in Level II have limitations in the ease of performing movement transitions; walking outdoors and in the community; the need for assistive mobility devices when beginning to walk; quality of movement; and the ability to perform gross motor skills such as running and jumping.
Distinctions Between Levels II and III
Differences are seen in the degree of achievement of functional mobility. Children in Level III need assistive mobility devices and frequently orthoses to walk, while children in Level II do not require assistive mobility devices after age 4.
Distinctions Between Level III and IV
Differences in sitting ability and mobility exist, even allowing for extensive use of assistive technology. Children in Level III sit
independently, have independent floor mobility, and walk with assistive mobility devices. Children in Level IV function in sitting (usually
supported) but independent mobility is very limited. Children in Level IV are more likely to be transported or use power mobility.
Distinctions Between Levels IV and V
Children in Level V lack independence even in basic antigravity postural control. Self-mobility is achieved only if the child can learn how to
operate an electrically powered wheelchair.
Toby was a level 3 bordering on a 2 prior to the operation. He could walk with aids and walk a little bit inside with no aids but needed to be closely guarded at all times.
If you are reading this and have a child with CP – your child’s physio will know where your child fits into the above system. It is not as simple as judging it yourself, a 66 point test has to be conducted to “grade” your child – I personally do not agree with it, but it is the measure that ALL therapists work with in the UK.
When Toby returned from the States, given how weak he was, he was a level three, and now with every day/week/month - he is gaining new skills, retaining those skills and is about to turn to a level 2.
The classification is very strict and this is something that is used as an indicator as to the success of the operation in the UK. I find this infuriating. It examines how long you can sit in one position, how long you can high kneel, how long you can raise your hands above your head – all ‘fluffy’ stuff when looking at what other functional life changing gains can be made after SDR.
I will explain some of the things that Toby can now do that were impossible prior to the operation.
· He can sit on the floor in school with his legs crossed like his peers (he used to sit in a special needs chair with the teacher)
· He can sit on the toilet by himself and pull up his trousers (he used to have to have help with all of this)
· He can put on his socks and shoes (he used to have trouble touching his feet)
· He can walk with something in his hands (before he had to concentrate so much he could not multi task)
· He is learning to jump and can now use a trampoline (before he could only lie stiff straight and someone else would have to jump around him so he could feel what a ‘bounce’ felt like)
· He can flip in and out of positions without his legs scissoring and getting in a tangle
· He is trying to learn to run
· He is more sociable and is becoming more and more confident (prior to the op he was very reclusive and would not speak to his peers)
· He has made good friends in school and is making positive gains in the curriculum.
· He is now able to open doors and walk through them (prior to the op he would not have been able to consider such a complicated task)
· He is trying to learn to walk backwards (kids with his grade CP are mostly unable to do this task)
· He is learning to swim (swimming used to make his legs scissor and he would be completely rigid)
Every week his is learning new tasks and new skills, and all of these are being kept as he no longer fights against spasticity.
The above changes are life changing for us as a family, but unfortunately none of these things are measured or considered by the GMFA test.
EG – prior to the op he could high kneel for 5 secs or more, he can still high kneel for 5 secs or more – so this would make no difference in the GMFA score there - but now he can high kneel/walk 30-40 foot holding onto a toy, clapping his hands and singing a song. Immeasurable on the GMFA scale, but when you are singing disco songs and are now able to join in with your friends, whereas before you would tire too easily and have to sit on your mum’s knee, these changes make the difference between “ok” days and ‘really awesome’ days!
Life is too complicated to be able to measure someone’s changes with a standardised test, what I am really trying to say is that parents views and that of the child should be the foremost indicator in how successful this operation is. Maybe then, the UK will be able to start making advances into helping children with CP instead of hiding behind a smokescreen of before and after GMFA studies and scores.
Our little boy had changed beyond belief since the operation. He has become someone who now realises he can make a contribution, he is gaining more confidence and he now has self belief. These changes are obviously not measured as indicators of SDR successfulness, but they should be major considerations as they are all knock on effects of new found independence.
I have gone into quite a bit of detail in my blog above, this is the way that I have educated myself and pushed the boundaries on the level of care I expect Toby to be receiving.
As I have always said – question, ask and write down and keep notes. The internet is an invaluable tool for finding out more about your child’s condition – it can also be a frightening place – so use your new found knowledge wisely.
I no longer take ‘as red’ what consultants say and this proved very significant last week when Toby’s emergency medication was changed. I did not think the dose prescribed was correct, I questioned it in the consultation and afterwards I investigated the change myself and then emailed the consultant concerned. He confirmed that the dose Toby had been prescribed was a potentially lethal dose and could have stopped him breathing, he has now amended it accordingly and I have a telephone consultation to discuss this ‘mistake’ later this week. How would I have lived with myself if I had not questioned this and gone on to administer this medication to my own son.
It does not bear thinking about – but I will, and it is another lesson to learn – trust your own judgement, you are your child’s advocate and if you are not on your soapbox shouting their corner and defending their rights, you can bet no-body else will step up in your place.
