If the care team agrees that a baclofen pump is a good option for your child, they may recommend a “trial dose” first. A trial dose typically takes place in the outpatient setting. During this trial, your child will receive a light anesthetic. The pediatric rehabilitation medicine doctor will inject a single dose of baclofen into the space around the spinal cord.

Next, a physical therapist (PT) will watch to see how your child responds to the medicine. The PT will look at muscle spasticity, stretch reflexes, and frequency of spasms or cramping. You will be asked to feel and move your child’s arms and legs during this time to tell if the medicine is helping.

The trial dose typically wears off within six to eight hours. Your child will be able to go home the same day. If your child responds well to the intrathecal baclofen trial, you may choose to have a pediatric neurosurgeon perform surgery to implant a pump. The surgery can occur immediately after this trial or later on depending on what works best for your family.

Surgery to place a baclofen pump lasts two to three hours. Your child will be put to sleep with general anesthesia. They will have two incisions. One incision will be on the abdomen, where the neurosurgeon will place the pump. The other will be on the lower back, where the neurosurgeon will insert the infusion catheter into the intrathecal space (spinal column).

During surgery, the neurosurgeon will implant the pump under the skin of the abdomen. The catheter will extend under the skin from the pump into the intrathecal space. The neurosurgeon will fill the pump with baclofen and program it to deliver a continuous, low dose.

After the surgery, your child will stay in the hospital for two to five days. For the first 24 hours, your child needs to stay flat in bed to help prevent a headache.

The care team may use an abdominal binder (wrap) after surgery to reduce swelling and help your child be more comfortable during the healing process. Your child will receive medicine to help control pain. A pediatric rehabilitation medicine doctor will examine your child every day during the hospital stay to watch for symptoms of baclofen overdose or withdrawal. The doctor will recommend possible dose adjustment to the pump and/or begin to decrease anti-spasticity medicine by mouth.

A PT may see your child during the hospital stay to help with mobility, transfers or equipment needs.

Your child will go home when they:

• Can drink fluids well
• Can sit comfortably
• Have had a bowel movement
• Are experiencing good pain control

Before you leave the hospital with your child, the care team will:

• Explain how to recognize signs and symptoms of baclofen withdrawal and overdose
• Teach you how to wash and care for the incisions and provide you with the materials needed to do so
• Provide anti-spasticity medicine tablets that you can give your child by mouth in the event of suspected withdrawal.

For the first two weeks after returning home, you will need to wash your child’s incisions every day with baby shampoo and warm water. For the next four to six weeks, you will need to limit some of your child’s activities such as bending, twisting or turning at the waist. This will help the healing process.

Your child should not take a bath until after the stitches are removed in clinic. This typically happens two weeks after the surgery. Your child may take a shower, if able. Showers in a shower chair are safe for the healing wound. Your child can continue using the abdominal binder at home if it makes them more comfortable.

About two weeks after going home, your child will have a follow-up visit with the pediatric neurosurgeon. They will check the incisions and see how well your child is responding to the baclofen.

Expect to have frequent follow-up visits at the Rehabilitation Medicine Clinic every one to two weeks for the first two or three months after surgery. The goal is to find the best dose to reduce your child’s symptoms of dystonia or spasticity while minimizing side effects. To adjust the dose, the doctor uses an electronic tablet with a programmer “wand.”

Your child’s care team may refer them to outpatient physical therapy to work on strengthening and mobility skills.

Your child’s pump must be refilled with baclofen every two to six months (depending on the dose).

To refill the pump, the pediatric rehabilitation medicine doctor or nurse will put a sterile needle through the skin into a refill port on the pump. The provider will remove any remaining baclofen from the pump and inject the new medicine into the pump. During this appointment, the provider may adjust the pump dose.

The care team will make sure you schedule a refill appointment one to two weeks before the pump runs out of baclofen. The pump is programmed to sound an emergency alarm if your child’s pump volume is low.

If the pump runs empty or has an unexpected malfunction, your child can experience baclofen withdrawal symptoms. These can be severe and life-threatening and include:

• High fever
• Changes in thinking and behavior
• Muscle stiffness
• Nausea
• Headache
• Dizziness
• Organ damage

Possible Baclofen Overdose

It is rare, but a child can receive too much baclofen through the pump. This is called baclofen overdose. Contact the Pediatric Rehabilitation Medicine Clinic or the Pump MD on call if your child’s muscles seem too loose or if your child seems too drowsy. Call 911 if your child has trouble breathing or will not wake up despite vigorous stimulation.

Possible Baclofen Withdrawal

Contact the Pediatric Rehabilitation Medicine Clinic or the Pump MD on call if your child develops muscle tightness or spasms along with:

• Fever
• Nausea
• Vomiting
• Headache
• Irritability
• Itching

These symptoms point to a condition known as baclofen withdrawal. This can occur if your child is used to getting the medicine and then suddenly isn’t getting enough.

The pump has an emergency alarm system. If you hear a faint noise similar to an ambulance siren coming from the pump, act quickly. It could mean that the pump is not working correctly, and the medicine is no longer flowing into the intrathecal space. Contact the Pediatric Rehabilitation Medicine Clinic or the Pump MD on call for instructions on giving oral anti-spasticity medicine. The provider may tell you to go to the emergency department for further evaluation.

Baclofen pump therapy can be very effective for children with spasticity or dystonia despite potential complication risks. It can reduce pain and discomfort, improve function and mobility, and make positioning and caregiving easier. It can be used along with other therapies, such as oral medication, Botox injections (for children with CP and dystonia), and deep brain stimulation (for children with dystonia). And, if the therapy isn’t effective, the pump can be removed safely at any time.

The battery in the baclofen pump can last up to seven years. Before the battery runs out, your child will need another surgery to replace the pump. Your pediatric rehabilitation medicine doctor will notify you when there is about one year remaining on the pump’s battery life. This allows for plenty of time to schedule pump replacement surgery.