Its been a bit of a rollercoaster with Charlie the last few weeks. Despite his achievements and progression his latest visit to Sheffield Children’s Hospital was met with the need for another op and another go with Botox.
I think we expected as much- Charlie has grown so much, he is easily one of the tallest in his preschool class and his muscles are struggling to keep up. As his bones grow it pulls and stretches his muscles behind them and with Charlie’s increased tone it simply multiplies his spasticity. As both Lou and myself are reasonably tall it seems that Charlie is likely to eclipse us- something that should be great but actually is likely to cause increasing problems for him as he grows. Heyho- he’s keeping on top of it with all the movements, stretching, physio and therapy at the moment and there is nothing to stop us continuing- if the Botox helps- happy days.
It seems strange having just described Charlie’s growth and increased tone that his Paediatrician and Orthopaedic Consultant actually think he shouldn’t be on the Baclofen now. He’s been on the same dose since he was a toddler and hasn’t needed it increasing. Without knowing it he weened himself off the dosage he’s on simply by growing. Instead of 2.5ml twice a day we are gradually reducing the dose 0.5ml once a day every 2 weeks. We’re down to 1ml in the morning and 1ml in the evening with no detrimental effect. It’s important to reduce Baclofen slowly and in-stages as it is associated with a withdrawal syndrome. Yes, his legs are a little stiffer but he has grown so much; as we are keeping on top of his tone with his physio and ABM we simply aren’t needing the meds. We are also noticing that his core muscles and his knee are seemingly more controlled- Baclofen doesn’t just affect spastic muscles; it has obviously affected Charlie’s weaker muscles too making them weaker still. We have noticed his head carriage has been much more controlled and his tummy and back have seem to ‘straighten’ him- he physically seems taller. As he has come off the muscle relaxant we are also seeing him seem to liven up himself and be clearer in thought and speech. If we can keep his legs long and lithe, without contractures and spasms, being off the Baclofen looks to be a good thing!
At his last ophthalmology appointment we also found that his lazy eye was wandering again and needs another resection operation. Not great news as it means the longer it is left the more likely his brain is to ‘turn off’ the lazy signal to avoid double vision. It isn’t particularly pleasant in the short-term but hopefully should be much more beneficial in the long run- fingers crossed!