This story reflects the experience of one individual who is receiving Medtronic ITB TherapySM for the treatment of severe spasticity. Medtronic, Inc. invited this person to share this story candidly. As you read it, please bear in mind that the experiences are specific to this particular individual. Results vary; not every response is the same.
Francesca is a happy, smiling 10 year old from Cheshire.
Born nine weeks premature, Francesca’s brain can’t communicate properly with her muscles, a condition doctors call cerebral palsy. This leaves her with constantly tense, stiff and uncontrollable muscles (spasticity), making it impossible for her to sit unaided, crawl or walk. She struggles to feed herself and is unable to write legibly. The pain of permanently taut muscles means sleep is a constant problem and Francesca has never slept through the night in her short life.
Beyond the day-to-day pain and difficulty moving, muscle spasticity can have devastating effects on children’s growth and development. The spasticity of the muscles prevents bones from growing normally and can create deformities and scoliosis (curvature of the spine), which in turn can lead to more pain and require surgery.
Francesca was diagnosed at just 6-months old. Ever since, her parents have carried out daily physical therapy to loosen her muscles and help prevent any damage. This is a constant battle as Francesca grows.
Physiotherapy alone is not enough, so doctors tried Botox injections. But as Botox only targets specific muscle groups it proved ineffective for Francesca.
Francesca then tried oral baclofen, a muscle relaxant medicine; however, even on a high dose her muscles remained stiff and painful.
At 10 years old Francesca was rapidly heading towards a major growth spurt that could cause significant pain. Her Orthopaedic Consultant suggested an Intrathecal Baclofen Pump (ITB Pump), a device which would be implanted into Francesca’s body and would give her a constant supply of baclofen directly into her spine to alleviate the spasticity.
After a long discussion with experts at the Alder Hey hospital, Francesca and her parents felt that this was the correct route to take.
The first stage was to try a test dose injected directly into the space around the spinal cord. There was no change after the first test dose but after the second higher dose Francesca’s legs and arms were much looser. This showed that the therapy would work.
The ITB pump was then implanted. Unfortunately, during the initial test procedure Francesca lost some cerebral spinal fluid, which left her with headaches and sickness for a few days. This made the final pump implant a nervous time for her. She was very distressed going into theatre but Pat the Play Specialist at Alder Hey was on hand to make her laugh and ease the stress.
A few hours later Francesca awoke and was soon back to her cheeky, chatty self. She was nervous when she moved as it felt strange but in no time was proud of her scar and had given her pump a name – ‘Becky’ the baclofen pump.
The dose of baclofen given through the pump is increased slowly, using a small programmer held over the pump, to carefully monitor progress and any side effects. It can take several months to reach the optimum level.
The ITB Pump is not a miracle cure. The goal in Francesca’s case was to protect her bones as she grows and reduce her pain and spasticity enabling her to do more for herself. Four months on, the early results have made a significant difference to Francesca’s life.
Her sleeping has improved. Francesca says she is much more comfortable and has even slept through the night. Her posture is now much better and she can sit unaided for much longer. She is also now able to feed herself a whole meal, rather than a few messy mouthfuls.
Francesca always wanted to walk from the bathroom to her bedroom. Previously her parents would have to fully support her weight and uncross her legs after every step. Now she is able to walk, still with the help of her parents, but her legs do not cross and she can take her own weight.
After the implant Francesca wanted to tell others about the treatment, even speaking to three families while she was still in hospital. She has since written a story of how she and “Becky” her pump became a team and spoken to 50 people at an ITB information day for Alder Hey hospital.
Information on this site should not be used as a substitute for talking with your doctor. Always talk with your doctor about diagnosis and treatment information.