A newly implanted ITB pump usually contains a one- to three-month supply of baclofen, depending on the dose and the concentration of medication it delivers. It needs to be refilled by your child’s health care provider before it runs out of baclofen. The refill takes 20 to 30 minutes and your child can usually go back to work or school afterward.
Frequency
Most pumps need to be refilled every one to three months, although some kids have their pumps refilled as often as once a month, or as rarely as once every six months. Each time your child’s pump is refilled, we’ll schedule the next refill appointment before you leave the clinic. The scheduler will use the pump’s alarm date to make a refill appointment.
Alarm Date
The alarm date appears on your child’s pump printout when there are just a few days of medication left. You should get the pump refilled seven to ten days before this date. If the pump runs out of medicine, your child might go into baclofen withdrawal, which is uncomfortable and might be life-threatening.
What Happens During a Pump Refill
First, the nurse will read the pump using a programmer—a computerized device to reprogram the pump. This lets us know your child’s dose, medication concentration and program. We’ll ask about your child’s muscle tone, range of motion, current medicines, and general health.
Kids typically will lie on an exam table during the refill. We might first apply a topical anesthetic to the skin to numb the area and make the procedure more comfortable. A care provider cleans the skin over the pump with an antiseptic. To refill the pump, we insert a needle through your child’s skin directly into the reservoir of the pump. Your child likely will feel some pressure on the abdomen. After the needle enters the pump, we remove leftover baclofen and add a new supply of medication.
Reprogramming Dose Adjustments
We adjust the dosage based on your child’s needs. If your child’s health care provider decides to change the dose, we usually do this at the time of the refill with no additional surgery. The programmer communicates with the pump and obtains information about its currently programmed dosages. It also allows us to transmit new dosage instructions to the pump. It takes 12 to 24 hours for a dose change to take effect.
ITB Pump Replacement
An ITB pump’s battery usually lasts five to seven years, depending on the dose it dispenses. Your child’s pump will need to be replaced before the battery runs out.
Pump replacement will require an overnight hospital stay. If the catheter must also be replaced, your child will require a five-day hospital stay and care similar to when the pump was first implanted. They’ll need to wear an abdominal binder again to support the pump for six to eight weeks. If we replace the catheter, your child will need to lie flat for approximately three days.
Long-Term Management
Although your child will be able to do many things at home or while traveling, they need to avoid activities that could affect how the ITB pump is working. Kids with ITB pumps need to consider the influence of collision, air pressure, water pressure and water temperature before beginning an activity. Talk to your child’s health care provider before participating in activities that could affect the pump.
Before your family takes a trip—domestically or internationally—we’ll discuss what you might need to consider before traveling. For example, we might recommend:
- Having the ITB pump refilled.
- Bringing a supply of baclofen tablets.
- Carrying the name, address and phone number of a provider in the travel area who is familiar with baclofen pumps.
- Bringing your child’s Medtronic identification card and the toll-free number for Medtronic. (Medtronic is the manufacturer of the ITB pump.)
- Bringing an extra copy of your child’s printout and catheter implant data.
- Keeping oral medicines and other supplies your child might need easily accessible, especially when separated from checked luggage.
- Letting Gillette know if your child will need a pump refill before returning home.
- Letting health care providers know if your family plans to travel to another country so you can discuss any time zone adjustments.
The ITB pump might set off metal detectors at the airport—so having your child’s Medtronic pump identification card can be necessary to show airport security. If your child will be on a non-commercial airplane, make sure the aircraft doesn’t go higher than 8,000 feet.
Integrated Care
Successfully identifying which patients will benefit from intrathecal baclofen (ITB) therapy, performing ITB pump implantation and providing long-term care to patients who have ITB pumps requires the collaboration of a highly skilled team.
You’ll have access to a full range of services and extensive family support at Gillette. An expert team will collaborate to provide comprehensive care for your child, and will help you navigate the services you need.
ITB pump implantation might be just one part of your child’s treatment plan, which also might include:
- Orthotics, prosthetics and seating.
- Neurosurgery.
- Rehabilitation medicine.
- Rehabilitation therapies.
- Spasticity evaluation.
To help your family prepare for a hospital stay and make the most of long-term care, Gillette offers support services like: