Your child has had an intrathecal baclofen pump fitted

The aim of this advice is to give you basic information about what to expect after your child has had an intrathecal baclofen pump implanted.

How long will my child be in hospital following insertion of the intrathecal baclofen pump?

If there are no complications your child will be in hospital 2 to 3 days.

Will there be a large wound?

There will be 2 wound sites – 1 on the tummy where the pump is placed under the skin and another small one at the bottom of the back where the catheter goes into the spine. Each wound will have a dressing covering the stitches. A degree of bruising around the wound at the front is usual.

When will my child’s stitches be removed?

The wounds will be checked and if needed (the stitches may be dissolvable) the stitches will be removed around 10 days after the pump has been implanted. This will be done during an outpatient appointment on Ward 5.

Once your child has gone home, if there is any oozing, redness or swelling around either of the wound areas contact Ward 5 immediately on 0114 271 7784.

Will my child be able to move around as normal?

During the first week after the operation, we recommend that you gradually increase the time your child spends upright in sitting or standing position. Sometimes children experience headaches when they are upright in these first few days after the pump is inserted.

After the first week, your child can be positioned as usual, including lying on their stomach. Sometimes the straps on your child’s equipment may need to be moved so that they do not rub against the skin around the pump. Speak to your local physiotherapist or occupational therapist if you are worried about strap positions.

When will my child’s pump need replacing?

Each pump lasts around 5 years before it needs replacing. Sometimes it may need replacing sooner if there have been any complications although this is very rare.

Will intrathecal baclofen therapy cure my child’s spasticity?

No, intrathecal baclofen therapy is used to help manage the spasticity but cannot take away its cause.

How will I know if the pump needs refilling?

When you attend clinic, the pump will be programmed to deliver the correct dose. You will receive a print out from the pump computer giving a date when the pump will need refilling. An appointment will be sent to you to attend clinic for a refill just before this time. If you have not received an appointment please contact a member of the team as soon as possible to arrange an appointment.

Once your child is on a stable dose the pump will need refilling around every 3 to 6 months. But it could be more frequent depending upon the dose your child needs.

Refill dates are scheduled based upon:

• the amount of baclofen the pump holds
• the concentration of the medication your child is receiving
• the rate at which the pump delivers the baclofen
• the frequency of dosing changes needed on your particular treatment plan

The pump has an inbuilt alarm that beeps when the pump is running out of baclofen. The alarm is set to beep when there is 2mls of baclofen left in the pump. It does not mean the pump has totally run out. If you hear this beep please contact a member of the intrathecal baclofen therapy team as soon as possible to prevent any symptoms of withdrawal. We will then set an appointment for immediate refill.

How long does a refill procedure take?

Each refill appointment last around 30 minutes. This time includes getting your child comfortable and preparing the skin before refilling the pump.

Your child’s skin over the pump area will be cleaned and numbed with either an anaesthetic cream or spray. The pump is refilled using a needle going directly through the skin and into the pump itself. The actual refill takes only a few minutes. Once the pump is refilled it is programmed and a print out is taken from the computer stating the dose and when the next refill is needed.

During this appointment the effects of the baclofen are discussed and assessed, and dosages are altered if required.

What if my child is uncomfortable when we go home?

Sometimes children have headaches during the first week after the operation. If your child can not tell you where it hurts but does appear irritable and upset, it is most likely to be a headache. Headaches tend to appear in the first few days when children sit up. These are called low pressure headaches – other symptoms of this include vomiting and a stiff neck.

We recommend that you gradually increase the time your child spends sitting or standing. If you suspect they have a headache, give paracetamol for pain relief and lie your child down.

How long do I need to wait to bath my child?

Usually wait 10 days after the insertion of the pump before bathing your child. Once the wounds have been checked and the stitches are out then they can be bathed.

When can my child do their usual hobbies and activities?

Once the wound has fully healed, your child can go back to all their normal activities such as swimming.

If in doubt about any other particular activities please contact a member of the intrathecal baclofen team.

Will my child still be able to fly in an airplane?

Your child will still be able to fly but you should discuss this with the team at Sheffield Children’s. The pump may need refilling before the trip to make sure that it does not run out while abroad. The pump may set off the metal detectors at the airport, so carry the identification card to present to airport security if needed.

You will need a letter from the consultant to explaining your child has an intrathecal baclofen pump and is safe to fly. Let the team know in advance to arrange this letter.