Botulinum Toxin-A (BoNT-A) is a common treatment used for managing spasticity in children with cerebral palsy. There are a number of important things you need to know and do before your child’s BoNT-A treatment.
Additional appointments on the day
To ensure the day runs as smoothly as possible, please arrive on time for your appointments. All children must attend a brief appointment at our pre-admission clinic. This is to confirm goals, muscle selection and therapy requirements, as well as ensuring they are well and fit to proceed with the injections.
Some children will need to attend other appointments which will be listed on your appointment schedule. These additional appointments may include some or all of the following:
- Gait laboratory – for children who are able to walk (with or without an aid); specialized footage is taken of their walking, usually before and after their injections. This is used to monitor progress or deterioration in their walking and help to make decisions about which muscles to inject. If your child walks with a mobility aid (e.g. kaye-walker, crutches, other walkers), please bring this along. If your child wears splints or ankle-foot orthoses please bring these also.
- Upper limb review – for children having BoNT-A to their upper limb, a review appointment with the occupational therapist is necessary for thorough assessment, goal setting and possible video footage of upper limb function.
- Orthotics review – if one of the doctors or physiotherapists has recommended orthotics (ankle-foot orthoses or other splints) or a special hip brace (SWASH brace), you will be given an appointment to see one of our orthotists.
If your child is having their injections under a general anaesthetic or sedation, they will be admitted to either the medical or surgical day unit. Occasionally this might occur after the scheduled admission time, but this is not a problem as the admissions team will be aware your child is attending the pre-admission clinic.
Sometimes complexities and unforseen difficulties may result in delays which mean your child is seen later than their scheduled appointment time. All appointments will still go ahead, they may just be delayed. This will not affect your child’s admission as our staff will keep the admissions department informed of any delays.
How long will the clinic last for?
- Pre-admission clinics start at 8am on Fridays and 9am on Mondays. The exact time of your child’s appointment will be included in their appointment letter. The main theatre injecting list starts at 1pm. Depending on where your child is situated on the theatre list, they might be discharged as early as 3pm or as late as 5pm.
- Please account for this length of time in your day and make alternative arrangements as necessary (e.g. picking up other children from school, travel time if from you are returning to regional areas or other commitments on the afternoon or evening of your child’s BoNT-A injections).
- If more complex or time-consuming assessments are required your child may need to attend appointments in the days or weeks leading up to their BoNT-A injection date.
- If you are travelling from a regional area, you may need to arrive a day or two before the injection date to attend appointments.
- If your child needs appointments before their scheduled BoNT-A date, our staff will arrange this with you
Anaesthetic for BoNT-A
Some children have their injections in our operating theatre so that we have access to anaesthetic to reduce the pain and anxiety that is can be associated with multiple injections. Children must keep still for their injections, so anaesthetic is an option for younger children or those having multiple muscles injected. Discuss this with your rehabilitation consultant prior to the day of injections.
Some children have their injections performed in the medical day unit or QPRS with sedation using oral or intranasal medication. This makes them drowsy and often they do not remember the procedure afterwards.
Fasting: All children requiring a general anaesthetic or sedation must fast for at least six hours before the procedure. We will provide you with a fasting information sheet so you know what to do.
If your child does eat or drink after the time specified, their BoNT-A procedure may need to be postponed for safety reasons. If your child needs to take medications or has another medical condition that is compromised by fasting, please discuss this with your doctor or our staff.
This option does not require your child to be admitted to the hospital as they have their injections in our outpatient area. Local anaesthetic cream or a cold device is applied to the areas to be injected to numb the skin. Children do not need to fast if they are having injections with local anaesthetic only and the process is much quicker, often only requiring you to be at the hospital for two hours.
Local anaesthetic and laughing gas (Entonox)
Local anaesthetic cream is applied to the areas to be injected to numb the skin. Once the cream has been on for a minimum of an hour, your child can breathe some laughing gas to help reduce their anxiety and pain. Your child needs to be able to hold the mouthpiece themselves for this option. Fasting is not required for Entonox however fasting for a couple of hours before the appointment may reduce nausea and vomiting. Discuss these options with your doctor. They will be able to suggest the best option for your child.
What to bring to the appointment
- Dress your child in loose clothing that can be pushed up or removed if required. Shorts are a good idea.
- The day can be long for you and your child. It’s a good idea to bring some of their favourite toys and activities to entertain them while waiting.
Please ensure you bring the following to your preadmission appointments:
- Medicare card
- current doctor’s referral if your referral has expired/indefinite referral
- any orthoses, splints or braces
- your child’s usual everyday footwear
- any walkers (e.g. kaye-walker, crutches).
If your child becomes unwell
If your child becomes unwell in the weeks leading up to their BoNT-A injection date, contact us immediately so we can plan whether to proceed or postpone your child’s BoNT-A procedure. If given enough notice (at least two days), we will do our best to negotiate a swap with a child from another list so your child does not have to return to the waiting list.
If we are not given enough notice or we are unable to negotiate a swap and your child may face a wait of three or more months.
If your child becomes ill on the morning of their BoNT-A injections, please contact us from 7.30am.
Goal setting for BoNT-A
Treatment with BoNT-A and the post-BoNT-A interventions such as therapy and casting, is to improve goals in the area of function, care and comfort.
Leading up to your child’s BoNT-A injections you should work with your child, doctor and therapists to set goals for the BoNT-A intervention. Often goals are set in areas where you or your child experiences difficulty and would like to see improvement.
Examples of goals may include:
- lower limb—reducing tripping and falling when walking, improving stepping, improving sitting balance, riding a bike, ability to walk up and down stairs
- upper limb—reducing fisting of the hand, improving ability to dress self, ability to stabilise paper, to be able to use scissors, catching a ball,
- care and comfort —ease of nappy changes and hygiene cares, reduction in pain.
Please think about your goals before your appointments with us. This will help us direct treatment and therapy to the most relevant muscles to help achieve your goals.
Queensland Paediatric Rehabilitation Service
Lady Cilento Children’s Hospital
Level 6, 501 Stanley Street, South Brisbane 4101
t: 07 3068 2950
t: 07 3068 1111 (general enquiries)
f: 07 3068 3909
In an emergency, always call 000.
If it’s not an emergency but you have any concerns, contact 13 Health (13 43 2584). Qualified staff will give you advice on who to talk to and how quickly you should do it. You can phone 24 hours a day, seven days a week.