Skyler has been on an oral medication called Baclofen for a number of years now, since he was pretty young. Baclofen is a very commonly used drug to treat kids and adults with severe spasticity. Here is some information from a medical website Medtronic:
Definition
Spasticity is often described as tight, stiff muscles or spasms that may make movement, posture, and balance difficult. It may affect your ability to move one or more of your limbs, or to move one side of your body. Sometimes spasticity is so severe that it gets in the way of daily activities, sleep patterns, and caregiving.Causes
Spasticity is caused by damage or injury to the part of the central nervous system (the brain or spinal cord) that controls voluntary movement. This damage disrupts important signals between the nervous system and muscles, creating an imbalance that increases muscle activity or spasms.Symptoms
Symptoms of spasticity may include:- Increased muscle tone
- Overactive reflexes
- Involuntary movements, which may include spasms (brisk and/or sustained involuntary muscle contraction) and clonus (series of fast involuntary contractions)
- Pain
- Decreased functional abilities and delayed motor development
- Difficulty with care and hygiene
- Abnormal posture
- Contractures (permanent contraction of the muscle and tendon due to severe persistent stiffess and spasms)
- Bone and joint deformities
Some of the things that we have tried with Skyler are Physical Therapy, stretching, surgeries to lengthen tendons and block nerves, injections, as well as the oral Baclofen I mentioned before. Some have been effective, some have not. The biggest issue we have seen since he has grown up into an adult is that the amount of oral Baclofen needed to control his stiffness and spasms has increased to where if we give him that large of a dose, it also effects his alertness. In order to give him enough comfort, we have to dose him to where he is sleepy or woozy.
So after having a consult at Childrens Hospital here in Denver with a number of doctors, it looks like the recommendation for Skyler is a system called IBT (Intrathecal Baclofen Therapy). This is also called the Baclofen Pump. This is a device implanted into the body that delivers a constant, low dose of Baclofen into the spine. Normally, a test dosage of Baclofen is injected into an area of the spine to determine the benefit to the patient. But in Skyler’s case, they know that he responds to Baclofen since he has been on it for years. And there is always a risk when you poke around into the spine, so they would forego the test procedure.
The device is about the size of a hockey puck, with a port that connects to a catheter tube. The tube is routed around the body into the spine. Which part of the spine is determined by the surgeon so as to give Skyler the maximum benefit.There is a refilling port on the surface of the disk that is used to inject more Baclofen into the device when it runs low. This is done by needle, after numbing the surface of the skin. Typically, the device runs about 9 months or so until it needs refilling, and needs to be replaced about 5-7 years due to battery life.
As the picture shows, the pump goes into the abdomen and the tube is routed around the inside of the body into the spine. Here is a different view:
The pump is controlled through a telemetry device from outside the body. You can adjust how much Baclofen is administered as well as check on the status of the device.
For those who might want a more detailed (read gross) look at the procedure, I will show you a couple more pictures farther down...
So that is where we are at with Skyler, thanks for all of your thoughts and concern.
We appreciate it!
Chris and Kathy
