Children and young adults who may be candidates for ITB usually have severe dystonia that affects one side of the body or the entire body. Many have tried several oral medications without success.

Screening

Screening is not routinely performed in patients with CP or when tone reduction is for ease of care. It is performed in more unusual causes of dystonia and in highly functioning older children where specific goals for therapy have been set. Patients are admitted to the Children’s Hospital of Pittsburgh, usually on a Tuesday. Once they are admitted, they are evaluated by a physical therapist to obtain baseline scores of their dystonia. After the evaluation, they are taken to the operating room where a catheter is inserted with a needle into the spinal fluid. The catheter is then connected to external pump which will continuously infuse the drug baclofen at a higher concentration that can be given through a lumbar puncture. The patient is evaluated every morning and evening for the next 3-5 days and the dose of baclofen is increased each time until there has been a significant reduction in their dystonia, or the patient has unacceptable side effects such as drowsiness, or until the dose gets quite high (e.g., 900 mcg/day) without improvement. If the trial is successful, implantation of the pump is delayed for 2-6 weeks.

Surgery

The operation to insert a pump to treat dystonia is identical to that used to treat spasticity, except that the catheter inserted into the spinal fluid is often positioned at a higher level. We usually position it at the C1-2 level.

Expectations

The post operative care is the same as after insertion of a pump to treat spasticity, however, the starting dose of baclofen is usually higher and the doses are increased more rapidly. Improvements in dystonia are usually seen by the third or fourth postoperative day.

Follow-up

The pump needs to be refilled every two to six months, depending on the pump size, concentration and dose. Doses of ITB for dystonia are often higher than those used to treat spasticity. Common doses are 400-800 mcg/day.

Myths/Facts

1. MYTH: Dystonia is the same thing as athetosis.
   
   FACT: Dystonia and athetosis are quite different. They affect muscles differently, respond differently to oral medications, and respond differently to ITB.
2. MYTH: If a baclofen catheter is positioned in the cervical (neck) region, it will probably cause the patient to be unacceptably drowsy.
   
   FACT: We have positioned catheters in the mid and upper cervical area in over 100 patients during the past 3-4 years and have seen no increase in drowsiness.

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