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Intrathecal baclofen (ITB) therapy should be considered if your child has dystonia or spasticity that has not significantly improved with oral medication or Botox injections. The baclofen pump can be effective for most forms of secondary dystonia or dystonia mixed with spasticity, and especially beneficial when both the upper and lower body are affected. (Primary dystonia is treated more effectively with deep brain stimulation.)
To see if the baclofen pump is suitable for your child, we often do a screening test. Under brief, full sedation, a single baclofen injection is given via a lumbar puncture (spinal tap). A physical therapist does an evaluation before the injection and about three hours after the injection (when the medicine has its peak effect). The medicine usually wears off within six hours.
The main goal of ITB is to improve your child’s comfort, quality of life and ease of care. A few children will show symptom relief even while they’re still in the hospital, but you usually will not see major improvements for at least a few months.
Over time, ITB can markedly relieve painful muscle contractions, improve positioning and sometimes increase functional abilities in children with secondary dystonia; in our experience, more than half of the children who are found eligible for ITB will benefit. In children with spasticity, ITB can improve gait, mobility and daily functioning and decrease pain and fatigue.
The surgery for pump implantation takes about two hours and requires a hospital stay of two to five days. Right after surgery, your child will have to lie flat in bed for 24 hours to help prevent headache but then can resume a regular activity level. You can expect some swelling in the abdominal area, which is completely normal, and we will give your child a comfortable wrap to wear around her belly for the first six to eight weeks.
After the pump is implanted, your child will need regular follow-up exams every two to six months for dosing adjustment, medication refilling and pump maintenance. We will keep track of when the pump needs to be refilled. Refill visits last about half an hour; we numb the skin and then insert the medication through a small needle into a port on the pump. The discomfort is less than having blood drawn. Also, roughly every seven years, another operation will be needed to replace the pump itself.
Although complications with ITB are uncommon, there is a small risk for problems such as infection, leakage of cerebrospinal fluid along the catheter, breakage, kinking or disconnection of the catheter or pump malfunction. We will discuss the risks specific to your child with you in detail and provide you with a list of symptoms to be alert for.
If the pump starts beeping, if you notice any changes in your child’s condition or if you think she is getting too much or too little baclofen, call our baclofen pump pager at (617) 355-6369 pager #7867. Our clinical team is available 24 hours a day, 7 days a week.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”