Advanced Treatment for Severe Spasticity and Dystonia
Intrathecal baclofen therapy (ITB) is an advanced treatment option for children with significant muscle spasticity, dystonia or a combination of both. These movement disorders can interfere with comfort, daily activities, mobility or sleep. At Mary Free Bed Kids, our pediatric rehabilitation specialists carefully evaluate each child to determine whether ITB may be an effective part of their individualized care plan.
ITB delivers medication directly to the spinal fluid, allowing for better control of muscle tone with fewer side effects than oral medications. This therapy is typically considered when other treatments haven’t provided adequate relief or have caused unwanted side effects.
Our team works closely with children and families at every step—evaluation, trialing, implantation and long-term management—to ensure the safest and most effective outcomes possible.
Understanding Spasticity and Dystonia in Children
Spasticity and dystonia are common movement disorders in children with neurological conditions.
Spasticity is characterized by persistently overactive or stiff muscles. It can make movements difficult, limit range of motion and cause pain or fatigue.
Dystonia involves involuntary, variable muscle contractions that can result in twisting movements or abnormal postures. Some children experience both conditions simultaneously.
These movement challenges are often associated with conditions such as:
- Cerebral palsy
- Traumatic brain injury
- Spinal cord injury
- Genetic or metabolic neurological disorders
- Stroke or other acquired brain injuries
When left untreated or inadequately managed, spasticity and dystonia can lead to pain, joint contractures, difficulty with positioning, challenges with daily care, and reduced participation in everyday activities.
What is Intrathecal Baclofen Therapy?
Intrathecal baclofen therapy delivers baclofen—a muscle-relaxing medication—directly into the spinal fluid using an implanted pump and catheter system. By delivering medication directly to the nervous system, ITB allows for much smaller doses than oral baclofen while achieving greater effectiveness.
The ITB system consists of:
- A small pump, approximately the size of a hockey puck, implanted under the skin of the abdomen.
- A thin catheter that runs beneath the skin from the pump around the back and into the spinal canal.
The pump continuously delivers a programmed amount of baclofen directly to the spinal cord, where it helps reduce abnormal muscle tone.
Because the medication bypasses the digestive system, children often experience fewer side effects, such as drowsiness, fatigue, or cognitive changes that can occur with oral medications.
When is ITB considered?
Intrathecal baclofen therapy is not typically the first line of treatment. Most children begin with more conservative options before ITB is recommended.
ITB may be considered when:
- Oral baclofen or other medications are not effective enough.
- Higher doses of oral medication cause significant side effects.
- Muscle tone significantly interferes with comfort, positioning or daily care.
- Spasticity or dystonia limits progress in therapy or functional mobility.
Our pediatric rehabilitation physicians (physiatrists) conduct comprehensive evaluations to determine whether ITB is appropriate. This includes reviewing medical history, functional goals, response to previous treatments and overall health.
The ITB Test Dose Trial
Before moving forward with permanent pump implantation, children usually undergo a test dose trial to determine whether intrathecal baclofen is effective for them.
What happens during a test dose?
- A small needle is inserted into the lower spine during a lumbar puncture.
- Baclofen is injected directly into the spinal fluid.
- The needle is removed.
Following the injection, the child is closely monitored over several hours.
Therapy Evaluation
Physical and occupational therapists assess the child at multiple intervals to objectively measure:
- Changes in muscle tone.
- Improvements in range of motion.
- Functional movement or ease of care.
- Comfort and positioning.
This trial allows families and clinicians to see how the child responds to intrathecal baclofen before committing to surgery. Results from the test dose play a critical role in shared decision-making.
Surgical Implantation of the ITB Pump
If the test dose is successful, surgical implantation of the pump may be recommended.
The procedure involves:
- Implanting the pump beneath the skin of the abdomen.
- Threading the catheter under the skin around the back and into the spinal canal.
- Programming the pump to deliver a precise dose of medication.
The surgery is performed by experienced pediatric specialists. Children are closely monitored during recovery. Most children return to rehabilitation therapy soon after implantation to maximize the benefits of improved muscle tone.
Benefits of Treating Spasticity with ITB
Reducing spasticity and dystonia can significantly improve a child’s comfort level and ability to participate in daily tasks. Benefits of ITB therapy may include:
- Improved function.
- Easier movement and transitions.
- Improved ability to participate in therapy.
- Increased independence when possible.
- Easier daily care.
- Simplified dressing, bathing and hygiene.
- Reduced caregiver strain during transfers and positioning.
- Better positioning.
- Improved posture in wheelchairs or adaptive seating.
- Enhanced tolerance for braces or orthotics.
- Reduced risk of contractures.
- Decreased muscle stiffness that can lead to joint tightness.
- Support for long-term joint health and mobility.
- Decreased pain and discomfort.
- Reduced muscle spasms and tension.
- Improved overall comfort.
- Better sleep.
- Less nighttime muscle tightness or spasms.
- Better rest for both children and caregivers.
Goals vary for each child, and success is measured not only by movement but also by comfort and their ability to participate in daily activities.
Ongoing Management and Follow-Up Care
ITB therapy requires ongoing management to ensure safety and effectiveness.
The pump:
- Is programmable and adjustable based on the child’s needs.
- Requires periodic refills of medication (typically every 3–6 months, depending on the dose), performed in a clinical setting.
- Is monitored regularly by the care team.
As children grow and their needs change, pump settings may be adjusted to support new functional goals. Mary Free Bed Kids provides long-term follow-up care, education and support for families managing ITB therapy.
Potential Risks and Considerations
While intrathecal baclofen therapy is generally safe and effective, it does carry potential risks that families should understand.
Possible risks include:
- Infection at the surgical site.
- Pump or catheter malfunction.
- Medication delivery interruption, which can lead to withdrawal symptoms.
Our team takes extensive precautions to minimize risks and provides thorough education so families know how to recognize warning signs and when to seek immediate medical attention
A Team-Based Approach to Pediatric ITB Therapy
At Mary Free Bed Kids, ITB therapy is delivered through a collaborative, multidisciplinary approach. Care teams may include:
- Pediatric rehabilitation physicians (physiatrists)
- Neurosurgeons
- Physical and occupational therapists
- Nurses and advanced practice providers
- Care coordinators and family support staff
This team works together to ensure each child receives comprehensive, coordinated care tailored to their unique needs and goals.
Why Choose Mary Free Bed Kids
Mary Free Bed Kids is nationally recognized for pediatric rehabilitation expertise. Our experience with complex neurological conditions allows us to offer advanced therapies like intrathecal baclofen within a supportive, family-centered environment.
We’re committed to:
- Evidence-based care.
- Individualized treatment plans.
- Clear communication with families.
- Long-term partnership throughout a child’s rehabilitation journey.
Learn More About Intrathecal Baclofen Therapy
If your child has spasticity or dystonia that impacts their daily life, intrathecal baclofen therapy may be an option worth exploring. Our team is here to answer questions, provide evaluations and help families make informed decisions about care.
Contact Mary Free Bed Kids to learn more about intrathecal baclofen therapy and whether it may be right for your child.