My wife and I made a tough decision this year. My son has spastic quadriplegic cerebral palsy, and since birth, we had been treating the spasticity with medicine. We had been on several oral drugs, including Baclofen and Gabapentin. We’d also done targeted sedated Botox and Phenol shots. Those worked for a while, but ultimately the results wore off.
We struggled to figure out a strategic approach to the medicines—meaning determining a larger plan behind them. It very much felt like we were throwing darts up against a dartboard hoping to hit the bullseye.
This concerned us from a health perspective. My family already has genetic kidney disease issues to consider, so we worried about the long-lasting effects that medication would have on his body. Instead we explored surgical, supposedly permanent, solutions to his spasticity.
Making this decision was tough. It wasn’t easy to decide to put our son through that, nor was it easy to cut ties with doctors who disagreed with our decision-making process. But ultimately we did what we thought was best for the present and the future of our son’s health.
These types of life-altering decisions are so common for parents of kids with disabilities. We do what we think is right and combine our hope, our critical thinking skills, and the love we have for our children and take a leap of faith in one direction or another. The decisions are never easy; nor should they be. But it’s what we must do to care for our children.
In our case, the surgical perspective seems to have worked out well. Does this mean we’ll never have to treat our son medicinally? Absolutely not. But for right now we are off medication, which fits well within our goals and our objectives for our son.
Ultimately, when making this decision, I followed two pieces of advice.
First, get as much information as you possibly can. Talk to doctors, talk to other parents, and talk to people you trust.
And second, trust your gut. You know what is best for your child and you WILL make the right decision.
Those two steps are about the only thing we can do when making tough decisions like this.
The surgery came with its own challenges, just as the medicinal approach would. But we feel good about where we are, and feel good about the future we’ve created for him.
Here is more good information on how to talk to your doctor.
Medical supplies are a funny thing. Some items we get with ease and they start to pile up. Others seem near impossible to get our hands on. Here are some tips to help make sure that your child has the supplies they need.