No, this post is not about breastfeeding. This isn’t that kind of blog.
The little man had a consult with a neurosurgeon last week about the possibility of implanting a Baclofen pump. I am wholly confused and undecided about this.
First, what is a Baclofen pump? Baclofen is the muscle relaxer the little man takes everyday to help with his spasticity. He takes it three times a day and it has to be refrigerated – not exactly the most-friendly medicine. If he doesn’t get his Baclofen, his limbs are tighter and he has more difficultly maneuvering, especially with his hands. A Baclofen pump is implanted into the abdomen and delivers the medicine straight into the spine in an area called the intrathecal space. Taking the medicine this way eliminates the regular muscle relaxer side effects, can possibly make the dose smaller, and, hopefully, makes the medicine more effective.
There are a lot of positives that can come with the pump. Aside from the possibility of greater muscle benefit for the little man, it would mean no longer being tied to a three-times-daily medicine and no longer having to plan days around doses or pack an appropriate insulated lunchbox. The little man’s last daily medicine would only have to be dealt with every few months when the pump is refilled (through a port). The hope is that the pump would greatly improve his muscle spasms. Since the spasms are a huge reason he is unable to sleep through a night, the pump could mean we finally get to have a normal sleeping situation. That would make a huge difference to all whole family.
There are also a lot of negatives. Since the medicine is being delivered straight to the spine, overdose is common as the new – typically lower – dose is being settled on. This would happen in the hospital, of course, but it is still a concern. Then there is just putting the little man through another surgery. Doing the test for the pump alone was horrible for our family; the little man had a spinal headache for a week after and it was unlike anything I had ever experienced. I dread willingly subjecting him to that possibility again. The pump only lasts for five years or so and will have to be replaced (just the pump though, not the catheter into the spine). Do I want to sign my son up for a lifetime of surgeries?
And of course, there is the unknown. The little man is tall and thin; will there be enough room for the pump? If we wait will he just get taller and thinner leaving even less room? What will his recovery period be like? Three weeks until normal activity for a five year old is pretty daunting.
The little man’s neurologist, his physical therapist at the hospital, and the neurosurgeon all think he is a good candidate. I must add, the neurosurgeon was wonderful. She answered all of our questions and didn’t pressure us to make any decisions during our consultation. But at this point, we just don’t know anyone who has first-hand experience with the pump.
Our next move is to meet with his physical and occupational therapists at school – the regular ladies who see him three times a week – and get their detailed opinions and information on any experiences they have had with the pump. I’ll be scouring the internet for opinions, of course, but most of the stuff I found in my initial looking several months ago had to do with older people. I really want to find some people talking about the pump in young children. After that, we’ll talk with his regular pediatrician and his doctor at the hospital’s medical home clinic. Both are tell-it-like-it-is doctors with excellent bedside manner.
Anyone out there have experience with the pump – good or bad? I’d love to hear your story.