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Botulinum toxin (also known as Botox) injections are frequently
offered to children with hemiplegia as part of their movement
therapy programme. They act to reduce the stiffness or 'spasticity'
of the muscles, improving range and function and decreasing
You may have been referred by your child's physiotherapist or
paediatrician to a team of health professionals to be assessed for
botulinum toxin treatment. This team will have set realistic,
individual and functional goals for your child. If you all agree
that botulinum toxin would be beneficial, you will be given a date
for your child's admission to hospital as a day case.
This information has been written to help you understand why
your child has been recommended botulinum toxin, and also answer
common queries about how it works, side effects and possible safety
concerns. We hope it will leave you feeling prepared, informed and
better able to support your child through the process.
Children with hemiplegia have problems controlling movement. The
brain is unable to control muscle activity by telling the reflexes
to turn off. Because of these problems, some muscles have
difficulty coordinating movement and generally lack the ability to
Botulinum toxin reduces the stiffness of these muscles by
preventing the nerve from over-stimulating the muscle. This allows
tight muscles to relax, so that they can stretch and grow. Doing
this may help to reduce the risk of permanent stiffening of the
joints and help control pain.
In upper limbs, botulinum toxin treatment can improve the
appearance of the affected arm and hand, which can be very
important to children. It can be used to try and improve reaching
and grasping and reducing thumb in palm position. Although
botulinum toxin is not licensed for use in the upper limb (the
child's arm, wrist or fingers), it is prescribed by doctors because
it can be a useful treatment as it allows them to be stretched. You
can read more about this kind of 'accepted unlicensed use'
In the leg it is most often used in calf (where its use is
licensed) and hamstring muscles by reducing knee flexion and foot
posturing (such as toe walking or intoeing) and so promoting a more
balanced and fluid gait. Splints are often better tolerated once
the foot is more relaxed. You can read more about the treatments
that are often used alongside botulinum toxin below.
These improvements to function and comfort may allow surgical
intervention to be delayed or even avoided in some children.
The key to finding the right treatment for children with
hemiplegia is to consider each child as an individual within their
family environment. Different treatments will be appropriate at
different times for different children. Your child's age, degree of
motor difficulties and functional abilities must guide the decision
as to whether botulinum toxin injections are appropriate.
The aim of these interventions is to maximise the effect of the
injections. They are likely to involve significant commitments of
time and effort so it is important that you and your child feel
prepared and informed.
It is also important to try and manage your expectations of the
treatment and be aware that the effects can never be guaranteed. It
is disappointing for everyone when the treatment is not as
successful as hoped or when beneficial effects start to wear off.
Make sure you talk to the team in charge of your child's treatment
and have clear, realistic expectations about what is involved and
what the outcomes might be.
Every hospital and unit will have their own way of working and
so procedures are likely to vary. Make sure you ask your doctor
about anything that you're not sure of at the assessment.
It is important to minimise the emotional impact of having
injections for your child, and appropriate sedative medication
should be discussed. Some children may need a general anaesthetic,
but others will prefer a local anaesthetic, often combined with
some sedation. Most children prefer a degree of sedation, but what
is right for your child will depend on your and their feelings.
Sedation can be given by mouth, intravenously or inhaled. Again,
discuss the options with the team helping you with your child.
Some practitioners will use ultrasound scanning or other ways of
guiding needle placement, but not all teams routinely provide this.
It will depend on the individual practitioner and unit. However,
the medical team involved should always have experience in the
management of hemiplegia and the administering of botulinum
It is usual for you to go and see your child's treatment team
again about one month after the injections are performed. This is
to see whether there should be any other changes to the movement
programme. You will then usually be seen again between two and six
months after this to discuss ongoing management.
The frequency and timing of injections depends on the individual
child and the assessing team. Generally, where they are beneficial,
injections are repeated annually until benefit is no longer
Continuation of botulinum toxin therapy depends on whether the
functional goals that were set during the assessment were reached
during the treatment period. Treatment should be stopped if no
improvements are seen.
Botulinum toxin takes effect gradually within a few days to a
few weeks. The peak of muscle relaxation occurs after about one
month. The muscle activation is back to its previous levels four
months after the injection. However, the benefits seen in daily use
of the limb may actually last longer as the muscle has had a good
long period of being stretched during physiotherapy. The
improvements can therefore last for anything up to a year.
Botulinum toxin injections are not a stand-alone treatment and
should only be considered as part of a wider management programme.
Botulinum toxin treatment works by reducing muscle tone, allowing
the muscles in the targeted area to relax for approximately 12-16
In order to make the most of this 'window of opportunity', your
child's therapy plan should carefully consider what other treatment
options can be used during this time. This could include serial
casting of a joint, splinting, occupational therapy and
physiotherapy. This focused combination of treatments aims to
improve motor skills and can bring about meaningful benefits for
Unless your child is in pain, it is particularly important that
there is a period of muscle strengthening after the injections. The
Association of Paediatric Chartered Physiotherapists (APCP) have
produced their own guidelines on post-botulinum toxin treatment
Your child's physiotherapist will be able to advise you of the
type and frequency of physiotherapy required. It is important to
focus on strengthening muscles, just as much, if not more than
An occupational therapist might also be able to recommend some
specific changes to your child's daily routine in order to
incorporate greater involvement of the treated muscles. It is
generally accepted now that a pulse of specific therapy after
injections is very beneficial.
Splinting involves the application of foot or ankle orthoses in
order to help prevent unwanted and uncontrolled movements that
result from muscle imbalance and increased tone in the lower leg
and ankle. Hand or arm splints do similar things in the upper
Serial casting is a non-surgical approach aimed at reducing
muscle tightness around a joint that is limiting functional
mobility. A well-padded cast is applied and removed on a regular
basis to gradually increase the range of motion in the affected
joint. When serial casting is used at the same time as botulinum
toxin injections, the casts are changed more frequently and stay on
for less time than when used alone. A physiotherapy programme is
used alongside this treatment to increase effectiveness.
As with all medicines there are possible adverse effects, but
treatment is generally well-tolerated. In clinical studies the
common side-effects were leg muscle weakness, falls, abnormal
walking, incontinence, diarrhoea and vomiting. If you see any side
effects, they are usually mild and temporary.
The information leaflet in your medicine pack tells you more
about the possible side-effects. If side-effects occur you should
tell the doctor, or report them at www.yellowcard.gov.uk
All medicines have to demonstrate their quality, safety and
effectiveness to the medicines evaluation authorities before they
are approved for use in the UK. All trial results, whether positive
or negative, have to be submitted to the authorities before
approval. After authorisation for use in the UK, the side effects
of medicines are monitored through a variety of systems and you and
your doctor can report any problems you encounter.
Some medicines needed by doctors for their young patients do not
have a licence for use in children because, for complex ethical and
practical reasons, clinical trials in young children have not been
Other medicines, like botulinum toxin, have uses approved from
clinical trials conducted in children for a specific disease or
illness, but not in other conditions, which remain unlicensed. When
botulinum toxin is injected in muscles other than the calf muscles
of children, where its use is licensed, then this is unlicensed use
of the medicine.
Doctors can, at their discretion, prescribe medications for an
unlicensed use if there is agreement within the medical profession
for it to be used in that way in clinical practice. There are a
number of international guidelines, called consensus statements,
which doctors can use to make decisions about the use of botulinum
This should be explained to you as part of the 'informed
consent' that is obtained before the injections take place.
Physiological changes to muscles, for example those that develop
with age, may mean that injections might not work or become less
effective. A few children develop a tolerance to the injections,
which also decreases their effectiveness. It is very important that
a skilled multidisciplinary team is involved in assessing and
reviewing the results, as too much botulinum toxin, given too
often, can be just as functionally limiting as none at all.
Botulinum toxin is only licensed for use in children with
cerebral palsy aged two years or older. It is usually recommended
that injections are started at as young an age as is feasibly
possible. Younger children generally have a more significant
response to botulinum toxin therapy because we all stiffen up with
Treatment is usually continued until the assessing team feels
there would be no further need or no continued benefit. This is
often midway through primary school for the lower limbs, and in the
teenage years for the upper limbs. Unless your child has a dystonic
hemiplegic cerebral palsy, there is generally little benefit in
repeat injections beyond the pre-teen growth spurt.
Botulinum toxin treatment works differently on different
children and you can never guarantee the results. It is important
to always consult closely with a specialist.