Baclofen Pump | Evaluation
How does my child get evaluated for a baclofen pump?
If your doctor recommends a baclofen pump for your child, you will meet with the baclofen pump nurse practitioners and learn about the pump to make sure it is appropriate for your child.
From there, the baclofen pump nurse practitioners will help schedule an appointment with a neurosurgeon. You and your child will meet with the neurosurgeon to discuss the baclofen pump further and plan for the surgery.
Baclofen pump therapy is not suitable for every child, so a trial helps you and your doctors decide if it’s right for you. Having a trial does not mean your child will definitely get a pump as there are many influencing factors. All of them will be discussed with you before any decision is made.
What happens at the baclofen trial?
- A physical therapist will examine your child in the morning prior to the procedure to learn his or her baseline level of spasticity.
- Your child will have a local or general anesthetic and will be given an injection (called a lumbar puncture) of baclofen into the space surrounding the spinal cord. This happens in the operating room.
- Your child should not have any pain during the procedure because of the anesthetic. During the day, your child may develop a headache. This can be a side effect of the lumbar puncture.
- After the procedure, your child will go to a recovery room and nurses will care for and observe him or her while the effects of the anesthetic wear off. Side effects can include drowsiness, nausea, and vomiting.
- The baclofen will begin to work about two to three hours after the medicine is injected. At that time, a doctor and physical therapist will examine your child again to see if the baclofen has had any effect on your child’s muscles.
If the trial is successful and your child responds well to the baclofen, we will proceed with placement of the baclofen pump, usually the next day, if this is what you decide.
The trial is a single dose of baclofen and may have a big effect on the tone (tension in the muscles) of your child’s legs. Remember, this effect may be more or less dramatic than the effect from the pump. This is because the pump dosing will be continuous and will be adjusted specifically for your child.
Baclofen Pump | Surgery & After Care
Baclofen pump placement surgery
If you and your child’s doctors decide that a baclofen pump is appropriate, the surgery is usually performed the day after the trial. Surgery lasts about two to three hours. The length of surgery will be reviewed at your initial appointment with the surgeon. If your child has had a spine fusion, the procedure may last a little longer.
After the surgery, your child will need to stay in a bed for 24 hours to help prevent headache. After that, your child can get out of bed after getting used to sitting up. You child will stay in the hospital for two to five days after surgery, depending on his or her individual recovery.
At first, the pump is programmed for a very low dose. The team will see your child on an outpatient basis every one to two weeks for small adjustments until the spasticity is improved.
Caring for the incisions
Your child will have one incision at the abdomen (belly) and one incision over the lower spine (low back). There will be dressings over the incisions that include Steri-Strips (white tape strips) across the incisions, which will fall off on their own. Keep them dry for one week after surgery. If they don’t fall off, you may take them off two weeks after surgery. Your child may bathe, swim, or submerge the incisions after two weeks if the incisions are healed.
For a few days to weeks after surgery, your child may have some swelling around the top and sides of the pump. This is from fluid and it is normal. An ace wrap or abdominal binder around the belly helps provide pressure to limit the swelling and to improve comfort. Your child should wear the binder for six to eight weeks after surgery.
If you notice any drainage from the incisions or any redness, contact the Baclofen Pump Team on call through the hospital pager at #7867 (PUMP).
Surgery after care
Activity
Your child will need to limit bending, twisting, or turning at the waist for six weeks. This limits stress on the incision and helps the catheter heal into place in your child’s back. Regular activities are fine.
Flying on an airplane is OK, but you should let airport security know about the pump because it may set off security alarms.
Medications
You may give your child acetaminophen (Tylenol®) every four to six hours for pain if needed.
Never stop anti-spasticity medicines like baclofen or Dantrium suddenly. This can cause withdrawal symptoms and may lead to illness. These medicines need to be stopped slowly. Once your child has a good result from the pump (which may take a couple of months), we will make a plan to begin stopping the oral baclofen.
Constipation
Constipation will sometimes get worse with a baclofen pump. Your child should have a bowel movement at least every two to three days. Keep your child on their bowel medicines if they use them. Ask your child’s doctor for help with this if needed.
School
Your child should be able to return to school within a week or so after coming home from the hospital. The school nurse will not need to address the pump but may need to reposition the binder to ensure it remains in the correct position in the first couple of months after surgery.
Coordination with other health care providers
Be sure to let you child’s other health care providers know that he or she has a pump.
Pump Information
Always carry the emergency card and plastic guide that will be mailed to you after the surgery by Medtronic. This card will inform emergency personnel of the pump.
Follow-up appointments
Appointments will be scheduled with the baclofen pump nurse practitioner every one to two weeks to adjust the dose of baclofen given through the pump until the correct dose is reached. Your child will also see the neurosurgeon about four weeks after surgery to check the incision for proper healing.
Refill procedure
Your child’s baclofen pump will need to be refilled every two to six months depending on the dose. On the front of the pump, there is a silicon port (opening) in the middle. A long, thin needle is used to inject the baclofen through the silicon into this port.
Your child will have the baclofen pump refilled in a clinic at Boston Children’s Hospital or a Boston Children’s Hospital satellite clinic. The visit takes 30 to 45 minutes.
- The skin over the pump will be numbed so your child will not feel the needle stick. The numbing cream is put on at home and should stay on for at least 60 minutes before the procedure starts.
- The area over and around the pump will be cleaned with a topical antiseptic solution to eliminate any germs in the area.
- A special paper drape is placed over the stomach with an open circle to expose the pump. A small plastic template is placed on the pump to help locate the refill port.
- A needle is inserted into the port of the pump. The old medicine in the pump is replaced with new medicine. The numbing cream used earlier will prevent your child from feeling any pain.
- Once the refill is complete, a device is used to program the pump to indicate that it has been filled with new medicine. The device will also report when the next refill is due.
- The nurse practitioner will schedule another refill appointment for your child before you leave.
We keep track of when your pump needs to be filled. If you need to change a refill visit, call your nurse practitioner immediately. You must reschedule the visit when you call. If you miss a refill visit, your child could have withdrawal symptoms and need to stay in the hospital.
Baclofen Pump | Frequently Asked Questions
Having a baclofen pump is generally safe and complications are rare, but can include:
- risk of a bad reaction to anesthesia
- risk of bleeding
- risk of spinal fluid leak
- risk of infection of the pump, catheter, or wound (from surgery)
- mild changes in bladder control (usually temporary)
- mild changes in sexual or bowel function
- overdose (too much) of baclofen
- under-dose (too little) of baclofen
- catheter kink (bent tubing), break, blockage, or disconnection from the pump, preventing baclofen from reaching the spinal cord
- implant or pump failure or malfunction
The catheter is firmly secured with stitches by the neurosurgeon. The catheter will move naturally with the spine as your child moves. The catheter will be long enough to allow for room for your child to grow.
The catheter is made of very durable plastic and mesh. It is very rare for a catheter to break, but it can happen. If the catheter breaks, the baclofen will leak and your child will not receive the full dose. Your child will experience the symptoms of under-dosing. Scans and tests can be done to see if the catheter is broken. If the catheter breaks and you decide to continue with treatment, your child will need an operation to have a new catheter put in place.
The battery in the pump lasts seven years. Before that time, your child will need another surgery to replace the pump. We will help keep track of when this will need to happen. In most cases, it is a much simpler surgery.
Overdose is rare. Children can get too much baclofen when a catheter is kinked and then becomes unkinked. This can also be caused by human error when programming the pump or because your child is sensitive to an increase in their dose of baclofen.
Call 617-355-6369, pager #7867 if your child has these signs or symptoms of too much baclofen:
- muscles that are too loose
- feeling drowsy
Call 911 if your child:
- had slow or irregular breathing
- will not wake up
After a short time, you child’s body will become dependent on baclofen. If for any reason they suddenly stop getting baclofen, it can make them very sick. This can happen because of a problem with the pump, a crack or break in the tubing, or if the pump becomes empty.
Signs that you child is not getting enough baclofen:
- muscles are tighter than usual and not relaxing
- high temperature
- itchy skin
- irritability (grumpiness)
If your child has any of these symptoms, page the baclofen pump pager at 617-355-5369, pager #7867 (PUMP).
