NOTE: The use of Botox for cerebral palsy patients has not been approved by the FDA and is considered an off-label use.
Spasticity, or muscle stiffness, is a common problem for children with cerebral palsy. Spastic muscles are tight and make all movement difficult. Consequently, spasticity can interfere with many motor activities including sitting, walking, feeding, talking and play. Oral and injected medications are helpful in treating cerebral palsy spasticity. Oral medications are effective in treating mild spasticity. Since these medications cannot be directed to a specific area of spasticity, patients with significant spasticity can be treated with injected medications such as Botulinum type A toxin (Botox®). Your physician may elect to use other injectable drugs such as Myobloc (Botulinum Toxin B) and Dysport (Botulinum Toxin A) which have similar effects and side-effects as those listed below. They will inform you if this is the case.
What is Botox?
Botulinum-A Toxin is a substance made by bacteria. This toxin can be purified and used safely and effectively to reduce spasticity in specific muscle groups. Botox works by blocking the chemical signal between nerves and muscles that makes the muscle contract or tighten. This provides reliable relief from spasticity symptoms including pain and muscle stiffness. It has been used safely in thousands of patients for over 25 years.
What are the benefits of Botox?
The benefits of Botox include:
- Significantly improved gait pattern.
- Improvement in positioning and range of motion.
- Decreased pain in stiff muscles.
- Reduction of spasticity and greater ease in stretching.
- Improved tolerance of braces.
- Possible delay in surgery until the patient is older.
- Improved independent use of the upper extremities for ADL completion.
How is Botox administered?
Prior to the injections:
To get the best effects from Botox your physician will inject the botox directly into the affected muscle group. Since this procedure involves multiple needle injections, all efforts are made to minimize anxiety and discomfort including:
- Ethyl Chloride: All patients will have a “freezing spray” used on the area to be injected.
- Oral versed-If requested by the patient or family, this drug is given prior to the procedure by mouth to reduce anxiety and provide amnesia for the procedure. When versed is given, vital signs are taken before and after the procedure and additional monitoring may be required. The medication takes about 20-30 minutes to take effect. The patient cannot go to school and must be under the care of an adult the day of versed administration. If the patient has a G-tube, it is imperative that you bring the G-tube connector for Versed administration.
- Bringing things from home: You are welcome to bring something from home that is comforting including, music, a special blanket or a favorite toy. Parents/care providers are encouraged to remain with the patient during the procedure.
The injection procedure:
If requested, versed is given prior to the start of the procedure. Once the physician is ready to administer the Botulinum Toxin, they will identify which muscle groups need to be injected. These areas are cleaned with alcohol and the “freeze spray” is applied. The physician will then administer the Botulinum Toxin using a small needle. The number of injections will depend on the size of the muscle and the total number of muscles to be injected. The actual injection procedure will take just a few minutes. After the injections are completed you will be given specific instructions regarding follow up.
What happens after the Botox injection?
After the Botulinum Toxin the patient may return to normal activities. If the physician has ordered serial casting to help stretch the muscles after the Botulinum Toxin injections, these casts will be placed in approximately one to two weeks. A change in the patient’s physical therapy program may also be requested to meet specific goals.
Most patients start to see results from the Botulinum Toxin within five days with maximum results between three to four weeks after the injections. Usually, Botulinum Toxin provides relief of spasticity in the injected muscle for over three months at which time the patients begin to notice a gradual fading of its effects over several weeks. At this point the physician can give another treatment. Botulinum Toxin cannot be given more frequently than every three months.
It is imperative that the patient return for their scheduled follow up appointment after the Botulinum Toxin is given so we can document the benefits of the Botulinum Toxin given and determine if another treatment is needed.
What are the side effects of Botox?
Side effects are generally transient and well-tolerated. The most common side effects (with an incidence of less than 10 percent) are:
- Temporary weakness to the extremity where the Botox has been given.
- Temporary general weakness.
- If given in the lower extremities (legs), falling may occur. This may be due to the change in ankle position, gait pattern or local weakness.
- Localized injection site pain. If this occurs, the patient may take Motrin or Tylenol. An ice pack to the injection site may also help. This should be resolved in just a few days.
- Localized injection site infection.
If you or your child have any of the following Botulinum Toxin cannot be administered:
- Fever, cough, cold or flu like symptoms
- Immunizations received within the last week
- Scheduled to receive immunizations within 7 days after Botulinum Toxin has been administered
- Pregnant or breastfeeding
BOTOX BLACK BOX WARNING
Postmarketing reports indicate that the effects of Botox and all botulinum toxin products may spread from the area of injection to produce symptoms consistent with botulinum toxin effects. These may include asthenia (lack or loss of strength and energy), generalized muscle weakness, diplopia (double vision), ptosis (droopy eyelids), dysphagia (difficulty swallowing), dysphonia (problems with voice quality), dysarthria (problems speaking), urinary incontinence, and breathing difficulties. These symptoms have been reported hours to weeks after injection. Swallowing and breathing difficulties can be life threatening, and there have been reports of death. The risk of symptoms is probably greatest in children treated for spasticity, but symptoms can also occur in adults treated for spasticity and other conditions, particularly in those patients who have underlying conditions that would predispose them to these symptoms. In unapproved uses, including spasticity in children, and in approved indications, cases of spread of effect have been reported at doses comparable to those used to treat cervical dystonia and at lower doses.
If you have any additional questions or concerns regarding the use of Botox in cerebral palsy patients, please contact the physician’s nurse at 858-576-1700, ext. 226014.