ITB (intrathecal baclofen pump) for 10 year old daughter with cerebral palsy

[RumblesJibbles]

My daughter has severe quadraplegic cerebral palsy. She is nearly 11. She extends a lot and very strongly. One of her main issues is that she arches her back when left unsupported, sometimes the back of her head is almost touching her bottom when she is laying on her side. This has led to curvature of her spine (lordosis). I believe this is known as a dystonic element to her cerebral palsy. She is now on the list for an ITB (intrathecal baclofen pump). Does anyone have any experience of the ITB pump....what are your thoughts, does it work, what are the downsides?

my son had ITB pump inserted at 16 years old . he has quadriplegia and severe spasticity. I posted in mumsnet under a different name at the time, we were happy with the outcome and it reduced his spasticity and made him seat able.
Howevey, now nearly 5 years on he has a very very severe scoliosis and I am now reading in the scientific press that the ITB pump may be a contributing factor. The complications of the scoliosis are life limiting. PLease discuss this potential outcome with your child's doctors.

it may be that my son's scoliosis would have progressed this far without IT B. ONe of the dangers of getting advice/ experiences from other parents is that our children are unique and their medical histories different. You must be guided by the doctors who know her