Parenting a child with spasticity

Clinic offers new lease on life for kids with spasticity and their families

Parenting is one of the toughest jobs around, but parenting a child with spasticity or other severe handicap presents extraordinary challenges. Round the clock care, additional expenses, doctors visits and tending to the rest of the family at the same time adds additional stress to the already stressful lifestyle of such parents. However a unique program at The Children's Hospital at Westmead is offering new hope to these special kids and their equally special parents.

Known as the Muscle Management Rehabilitation Program (MMRP) the clinic helps treat severe movement disorders in children with spasticity caused by cerebral palsy, brain injury or spinal cord injury by providing access to the latest treatments and so far has seen some amazing results.

Peter Nedved, a seven year old who was left severely brain damaged and physically impaired after a tragic accident in a backyard pool, underwent a revolutionary treatment known as Intrathecal Baclofen Therapy (ITB Therapy) at the clinic in October, 2001. According to Peter's mother Robyn, not only has the treatment assisted in Peter's overall condition but in doing so has improved her own quality of life as well.

"Peter's accident was a freak of nature and for a long time he required 24 hour care. He couldn't sleep because he was in constant pain, and seeing our son in such a condition was horrific as any parent could understand."

"ITB Therapy was a godsend not only for Peter but for the whole family. I know that Peter is getting the best treatment possible - he is in less pain and is less dependent which allows me to spend more time with my other children, and occasionally get a full night's sleep once in a while - something I know would not have been possible without the treatment!" said Mrs Nedved.

ITB Therapy involves the insertion of a special pump device that releases a small but constant supply of the medication Baclofen, which enables muscle relaxation, thereby reducing pain and improving overall movement.

According to paediatrician and Staff Specialist at the MMRP, Dr Adam Scheinberg, ITB Therapy is a major advancement in spasticity treatment.

"There is currently no treatment that can cure spasticity or severe movement disorders, but advancements like ITB Therapy significantly improve the quality of life of these children by relaxing the affected muscles to improve mobility and posture and reduce spasm and pain," said Dr Scheinberg.

The Program is funded entirely through the generosity of corporate organisations and community donations and has already received financial support from The Canterbury Bulldogs who recently donated $200,000 over a five-year period to the Program.

Funds donated by the Bulldogs will go directly into paying the $16,000 towards each individual implantable pump used in ITB Therapy.

For further information, or to arrange an interview with an expert in children's movement disorders, please contact:

Gilly Paxton
Manager
Public Relations
Ph: (02) 9845 0000

Julie Stromborg
Public Relations Officer
Public Relations
Ph: (02) 9845 0000