Paediatric physiotherapy is essentially playing games. Often what we do can seem boring to a child or feel unpleasant (mostly in the case of respiratory physio) which means that some kids cry on first sight of the dreaded physio uniform. One even declared that they would kill my educator if they didn't leave. So seeing as everyone loves games... it is the physio solution to sneakily getting the child to do the exercises they need.
But what if the kid doesn't like the game we've suggested? Well... you have to think of another. Creativity is essential! We had one kid who wanted to change games every 3 minutes. That's a lot of games to think of in one go. In the end we discovered that knocking over gnomes with a ball to make them grumpy was the game of choice, including myself as a grumpy gnome wearing a red cone as a hat. Requirement number 2: the ability to look like a fool.
I was in Neurology for paeds, and this is mainly epilepsy, developmental delay, strokes, acute disseminating encephalomyelinitis, overdoses and the like. This meant that we did quite a bit of developmental play including pretending to drink cups of tea, building beautiful towers only to have a child congratulated for knocking over your burst of creativity, bowling, posting letters, puzzles and xylophones. Oh, and the Xbox Kinect. There were at least 2 on every floor of the building with a variety of games. The play specialists had every board game you could think of! As children's hospitals go, this one had to be pretty damn perfect. Designed by children for children - genius!
As amazing as this place was - almost a child's paradise - some of the conditions were real life sob stories. Ever heard of Duchenne's Muscular Dystrophy? Well, it's a mutation in the genes that leads to muscle tissue being replaced by connective tissue and fat, slowly immobilising the child from birth until their respiratory and cardiac muscles become so inefficient that they can no longer breathe. By the age of 9 most children with the condition require orthoses to aid walking, and by 12 years 95% require a wheelchair full time. This wheelchair use only enhances the chances of developing scoliosis and to top it all off? Gastrointestinal problems are also evident with lower than average intelligence in approximately 60% of patients. The average prognosis is 20 years of life. Imagine being the parents of this child. How do you tell your child that they're going to need orthoses to walk before they reach secondary school? That they will need help from a teacher to go to the toilet in school? How do you cope with bullies telling your child they have 'robot legs'? And worst off all, how do you tell your child that their lungs will give in before the end of college?
How about Acute Disseminated Encephalomyelitis? This is a disease of the brain that usually follows a viral infection. Meaning? Well, meaning that the child has a perfectly normal development; walking, running and going to school, all until they catch the flu. It produces inflammation in the brain and spinal cord that leads to fever and in the case of the child we were dealing with, severe dystonia (which is varying tone of muscle resulting in severe muscular spasm and abnormal posture). At the age of 8 he was back in diapers needing his parents to clothe him and feed him through a tube. He's unable to communicate, but is still just as intelligent and aware of what's happening. He's now in palliative care, and his little sister is watching his abnormal self slowly disintegrate.
And to top it all off. These are some of the nicest people you will ever meet.
Don't get me wrong, it's not all sob stories here. Children may worsen quickly, but also recover at light speed. There are some real miracle stories too. One's where it was thought to be the end, but the kid fights back. It's just a shame that these are shadowed by the horror stories.
There is no song more fitting than this one.
Queen - No One But You
