Your child’s primary physician can assess for problems with tone and refer to subspecialists and/or therapists. A neurologist and physical medicine and rehabilitation specialist can recommend medications and interventions to mitigate spasticity. A physical therapist and occupational therapist will guide and recommend exercises and stretching to help reduce negative impacts of tone problems. Complex care and palliative care clinicians can help coordinate between specialists and help guide care goals.
Muscle Tone: Spasticity and Hypotonia
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Many children with SNI have abnormal muscle tone. Abnormal muscle tone is usually related to the brain’s impaired ability to communicate in a coordinated way to nerve pathways within the spinal cord and body that control muscle movement. In low tone (hypotonia), the muscles can be overly loose, making it harder for the body to control the position of the head, trunk or limbs against gravity. In high tone (spasticity), the muscles remain contracted and resist being stretched, which can cause discomfort and interfere with movement, speech and/or gait. Most children with SNI will have some areas of high tone and some areas of low tone. The goal of treatment is to decrease pain and help ensure comfort.
Muscle spasms and tension on muscles over time can result in changes in the position of the skeletal system, which can also cause pain; for example, when the ball of the hip is not in the hip socket (called hip subluxation). However, spasticity is not always painful. The goal of treatment for spasticity is both proactive and reactive: trying to keep muscles from developing tightness as well as treating tightness when it causes problems.
Spasticity treatment often includes a combination of physical and occupational therapy, medication, bracing and sometimes surgery. For example:
- Physical and occupational therapy will help increase muscle flexibility, prevent shrinkage or shortening of muscles, maintain range of motion and coordination, and reduce severity of symptoms like pain.
- Massage therapy and acupuncture may increase muscle relaxation and improve comfort.
- Botulinum toxin or phenol injections into the muscles may be recommended to selectively weaken muscles and improve range of motion and function. They are often used in conjunction with temporary casting.
- Oral medications can help reduce the tightness of muscles and are often used in conjunction with physical therapy and bracing.
- In some circumstances, medication delivered directly into the spinal column can be helpful in reducing spasticity. This is done via surgical implantation of an intrathecal (IT) pump, which is a delivery system implanted in the abdomen that delivers medication through a tube into the space around the spinal cord. You may hear reference to an intrathecal baclofen (ITB) pump, as the medication Baclofen can be administered this way.
- Rhizotomy is a surgical option for some children. It involves cutting selected nerve roots from the spinal cord that cause spasticity. Combined (dorsal/ventral) rhizotomy is specifically for children with severe spasticity, including those with dystonia. Selective dorsal rhizotomy is another type of surgery used for children with spasticity of the legs, typically in those able to walk.
- Surgery may be recommended for tendon release to relieve tight muscles and allow better range of motion.
Spasticity and pain affect each other. Other sources of pain also can cause muscles to tighten and spasm. The medical team will consider these causes, and might alternate treatment for spasticity and pain when recurrent pain and muscle spasms continue even after a medication for spasticity has been tried.
Many parents worry that their child is experiencing pain because of their spasticity, as this is a long-term problem that can worsen as a child grows. Treatment for your child’s spasticity will depend on their current baseline and whether the proposed interventions provide the appropriate balance of help without adding more harm. For example, body braces to maintain the position of your child’s ankles, wrists and/or spine may make good sense until (or unless) you see evidence that the braces cause more discomfort. If your child becomes uncomfortable, it may be helpful to talk with your team about how reducing or stopping the use of braces might affect your child.
Some parents feel guilt for considering options that are different from what the team is recommending, but you are being a responsible caregiver any time you ask questions and work with your team to determine what will most help your child have comfortable and enjoyable days. Whenever your child’s condition changes, for better or for worse, it is reasonable to revisit your care goals. Palliative care can explore these questions with you, and a physical therapist may be able to help you find new solutions.