This cyst, known as a syrinx, expands and elongates over time, destroying a portion of the spinal cord. As this occurs it causes injury to nerve fibres that carry information from the brain to the extremities. Damage of this nature often leads to progressive weakness in the arms and legs, general muscle deterioration, stiffness in the back, shoulders, arms or legs and chronic, severe pain. In addition to Syringomyelia, Max also has global developmental delays, a hole in his heart, fluid on his spine and a bleed on his brain.
Taking into account the effect of the condition upon Max’s spine, and muscles when he first started at The Peter Pan Centre he was unable to sit independently. We were able to place him into a seated position, however 90% of the time he would fall. Through the skills of our highly qualified Specialist Practitioners, and our specialist equipment we were able to use supportive seating (Lecky Chair) to aid posture, and build core body strength.
Through the use of the Lecky Chair, the Physio Trampoline, and a personalised Physiotherapy Programme, with a range of specialised equipment, we were able to work with Max from sitting independently, to crawling, to standing, where he now walks completely independently. Our main physical focus for Max now is building his confidence with his steps and working with gradients from as little as a pavement to steps, simple things that so many people take for granted.
Even though Max was 11 months old he showed no signs of communication apart from what appeared to be complaining persistently and discontentedly. When we spoke to Charlotte (Max’s Mum) she confirmed that this was also his behaviour at home stating “it had gotten so bad, the stress on the whole family was unbearable, it completely puts you off going out, ever” Although Max made sounds he showed no signs of developing this into a legible form of communication, this may be attributed to a lack of control over his internal muscle structures, or a cognitive response. On this basis it was difficult to assess the emotional wellbeing of Max, was he happy or sad? He seemed to be withdrawn, and uninterested in the activities which were presented to him, and subsequently frustrated at his inability to communicate this.
We wanted to ensure that in addition to physical strength Max is also able to express himself in a universally understood manner. It is for this reason, in partnership with Speech and Language Therapists, that we taught Max to use the Picture Exchange Communication System (PECS) this is a system which has subsequently been introduced to his home life, and the nursery which he now also attends. Max now has a means of communicating with people!
Back in September 2013 Max was fed through a nasogastric tube, which is a short term measure to combat an inability to orally feed / drink. He had thickener in his drinks, for those occasions when he was able to swallow, this was added to the liquid to prevent choking and stop it travelling into the lungs. Through the introduction of food and drink over the course of time, and maintaining a routine with the approach to this, our highly skilled and experienced staff have managed to encourage Max to brush his own teeth, wash his hands and eat, albeit in small amounts. He can now self-feed and self-hydrate, essential life skills. As a result of Max only taking in small amounts of solid food, for nutritional requirements he has now been fitted with a Percutaneous Endoscopic Gastrostomy (PEG). This is a surgically implanted tube which feeds directly into the stomach, allowing Max the time to get used to different food and drinks while still receiving the required nutrition.
We focus upon not only the child, but their family as a whole. We are here to offer support as much as we can in relation to the parent / carers needs also. With Charlotte we have assisted with a number of things, such as claiming for the disability living allowance (DLA) which is a daunting process for any parent. Max now has a complete Educational Health and Care Plan (EHC) We have been heavily involved in the transition to a mainstream nursery, sharing best practices, sharing work with the setting to ensure a continuation of Max’s care.
In the years we have supported Max and his family we have seen a disheartened, frustrated little boy, who showed no sign of either communication or mobility, go from strength to strength. Not only can Max walk, we are even working on climbing, not only does he have his PECS for communicating, we are now hearing a few words from him. Charlotte has said “based on all his progress I have to decide whether Max should go to a mainstream school, or a special needs school. What’s most important to me is that the school is right for him”
His once difficult to interpret expressions are now clear, and most importantly full of smiles.