Baclofen

A bit of background:
Baclofen is a muscle relaxant. It can be given orally to reduce high muscle tone and spasticity, but in oral form, the drug causes drowsiness and affects tone throughout the body. We tried oral baclofen for a while but a) never really saw much change in tone, and b) did want to do anything to compromise her few strengths - head control and sociability. In the Summer of 2007, C. was scheduled for surgery to her right hip (another post) and we decided to have a baclofen pump inserted at the same time. The pump is a device that delivers the baclofen directly to the spine - which means you can give much smaller doses and, depending on where you place the catheter, target only those muscles below the insertion point. In C's case we are targeting only her legs. I will save discussion of surgery and the hospital stay for another day - suffice to say C had the pump implanted in July 2007, went home 10 days later, but developed dramatic swelling around the surgical site, which eventually had to be drained via syringe. Some time after this, the pump actually flipped over in it's cavity beneath the skin which twisted the catheter to such a degree that the baclofen was no longer flowing. The pump had to be surgically revised in March 2008. Since then, she's been soing fine. Slowly increasing the dose and delivery rate of the baclofen. We have to say that in C's case the results are not particularly dramatic. Her legs and hips are significantly looser than before, making it easier to change diapers and get dressed. But at times her tone still kicks in, espacially if she's sick, in discomfort, constipated, or just plain mad. Baclofen is not, for us, a miracle drug - she's not suddenly able to sit or walk or anything (and we did not ever hope for that). It's simply another tool we use to manage her symptoms and try to make her life (and ours) a bit easier.