We recently had a meeting at the Ryegate Children’s Neurology Centre to discuss the possibility of Adam being fitted with a Baclofen pump. Baclofen is a medicine that relaxes muscle tone to help prevent spasticity (stiff or rigid muscles). Adam currently has Baclofen through his feeding tube but doing it this way affects his whole body which isn’t ideal. As his leg muscles are extremely rigid the pump would just mainly target them.
It is a big decision for us to make as its not the smallest of devices and it would be a major operation which involves the pump being implanted into his stomach, an attached catheter is then inserted directly into the fluid surrounding the spinal cord. The pump sends a continuous supply of Baclofen to this area which in turn would mainly target his legs. He would also have to go back to Sheffield Children’s every 3 months for the pump to be refilled and checked. We are under no pressure to make an immediate discussion and we think it would be better for him to undergo such a major operation when he is bigger.