CP occurs as a result of an insult to the developing brain in either a newborn or developing child.
It can present as either spasticity, athetoid or mixed types and the child’s development is affected to a greater or lesser extent, depending on the severity of the injury.
The gross motor function classification system describes the severity of the affected child ranging from very mild (I) to severe (V) in which the child is unable to sit or stand independently with no head control.
The management of CP is a multidisciplinary approach. Multiple specialists must work together in order to maximise the potential of the child. This requires involvement from a team of physiotherapists, occupational therapists, speech therapists, dieticians, orthotists, paediatric neurologists and paediatric orthopaedic surgeons.
Each member plays a vital role in the management of these children.
Management can either be conservative or surgical depending on the child’s age and severity.
Conservative management includes all of the above specialists intervention ranging from regular physiotherapy, speech therapy, feeding optimisation, splint and wheelchair/mobility assessment, dental assessment and medication including baclofen, anti-epileptic medication and Botox injections for spastic muscles.
Hip surveillance is also very important in these children and requires an X-ray of the hips every 6-12 months to prevent hip dislocation. Surgery can be performed, either as a soft tissue muscle release or bony surgery, to ensure the hips remain reduced in an effort to prevent hip pain long term and maintain good sitting, posture and hygiene.
The spine should also be regularly reviewed and if a severe scoliosis develops, surgery may be indicated to correct the deformity. Bracing should not be used in these patients.
In older CP children who can walk (ideally between the ages of six and twelve), single event multi-level surgery (SEMLS) has been shown to improve and maintain walking as the child becomes a teenager. This surgery may require both soft tissue and bony surgery after careful gait analysis and review with the physio team.
Goal setting is essential in the management of these children and realistic expectations and goals must always be kept in mind. Good communication with the team is vital.
Why do we do hip surveillance?
Babies are born with different anatomy in the hip region to adults. With normal growth and development this changes to the normal anatomy in adults. In children with CP this does not change as much. Children with CP don’t always stand as much as other babies and this means that their hips develop differently. With the tight muscles pulling the leg bone this muscle imbalance makes it easier for the leg bone to move out of the hip joint and dislocate.
It is very important for the doctors to know that the hip is moving out of place before it dislocates and this is why we take x-rays on a regular basis while your child is still young. The treatment for the pre dislocated hip is much easier and more effective than waiting for it to be dislocated for a long period of time.
Signs that your child’s hip is moving out.
- Pain when moving the legs apart
- Difficulty moving the legs apart/changing the nappy
What can we do if the hip is moving out of place?
If the hip is moving out of place as seen on the x-ray, then we will send you to the orthopaedic doctors, who work with the bones. They will assess your child and determine the correct management for the hip.
The first management option is correct positioning and stretches. This will help with sitting and activities of daily living. During the day when your child is lying or sitting you must make sure that the legs are apart with a towel or cushion between the legs. Try not to let your child lie with his/her legs crossed. You must also stretch the legs apart every day during dressing and bathing. You must hold the stretch for at least 30 counts.
The second management option is a botox injection into the muscles between the legs. Botox allows the muscles to relax so it is easier to stretch the muscles. The botox only lasts for 3-6 months so during this time you will need to come for extra physiotherapy, every second week for 2 months, and you will need to do extra stretches at home. It is also important to position your child correctly at home after the botox and they must be seated correctly in the buggy at home during the day. Your child will also be given key-stone splints over the knees to wear during the day to help with the positioning and stretches. When your child receives the botox you will go and see the orthopaedic doctors on the day before the botox so that your child can be admitted. Your child will then sleep in the hospital and go to theatre the next day for the botox. They are usually discharged on the day after the botox but this does sometimes change. Please make sure that you have a physiotherapy appointment when your child is discharged.
The next management option is for your child to go for an operation. The operation can either be to lengthen the muscles on the inside of the leg (adductors) or change the shape of the bone at the top of the leg. The aim of the operation is to put the bones into a better position so that there is less chance of the hip moving out. It is a big operation where they cut the leg bone and place it in the correct position with the use of pins and plates. The plates will usually need to be removed after about one year.
Your child will need extra care and may be more uncomfortable for up to three months after the operation. You have the right to decide whether it is the right time for you and your child for the operation. If you feel that it is not the right time, it is important that you discuss doing the operation at a later stage with the doctors. As it is a big operation, your child may stay in the hospital for up to two weeks after the operation, or maybe even longer depending on pain and the position of the hips. Because it is a big operation your child will experience pain after the operation, especially on the first day. The pain will get better with each day, but the doctors will prescribe strong pain medication to manage the pain. Often after the operation the children lose their appetite and don’t want to eat as much. This is usually due to the pain and the appetite improves after 3-4 days. If you are concerned please speak to the doctor or physio about it and they can get the dietician to prescribe food with extra energy. After the operation it is important for your child to lie in the correct position, with his/her legs apart with a pillow between them and the knees straight with keystones. As the pain gets better, the physiotherapist will slowly get your child into sitting. Once they are comfortable it is ok for your child to sit in the buggy and lie on his/her stomach for short periods during the day, as pain allows. The physiotherapist will show you how to do gentle stretches for the hips and how to remove the knee splints for short periods. Your child will not be able to lie on his or her side for 6 weeks after the operation. On discharge you will be given a follow-up physiotherapy appointment to ensure that you and your child are coping at home and to progress the exercises. After the operation you will also need to have the buggy checked to make sure that your child is seated properly during the day. Weight bearing can be assisted four weeks after the operation.
Sometimes the doctors will decide that your child needs to be put in an A-frame (big plaster cast with a stick between the legs) for 6 weeks to make sure that the hips don’t move out of place. With the cast on they can sit, lie on their backs or stomachs. Make sure that the cast doesn’t get wet, check the edge of the cast for pressure sores, and don’t place anything down the cast to scratch with – it can cause sores and damage the skin.
What can we do if the hip is dislocated?
If the hip is already dislocated, but it has only been dislocated for less than 6 months, then the doctors can operate as for a hip that is moving out with a varus derotation osteotomy of the femur (VDRO). This operation is much more difficult and less effective than doing it early after the dislocation. If the hip has been out for more than 6 months, there can be changes to the bones of the hip. These changes will cause more pain if the hip is put back into place. The doctors then manage the pain with medication and injections into the joint. As a final option the top part of the femur bone can be removed to alleviate severe pain if present.
Figure 1. Right hip subluxation progressing to dislocation. Patient was treated with a varus osteotomy of the proximal femur and fixed with a plate and screws which were removed a year after the initial procedure.
Figure 2. CP child with right hip dislocation treated with bilateral adductor muscle release and varus osteotomy of proximal femur, fixed with plate and screws. The hardware was removed a year after the initial operation as an overnight case.
Checklist for patients going for VDRO
- The mother has support at home to care for the child
- The family has the financial resources to visit the child in hospital for about 2 weeks and to bring the child for appropriate follow-up appointments
Feeding and nutrition
- All patients must be referred to Dietary department prior to admission
- Referral to Speech Therapy if
It takes the child more than 30 minutes to complete a feed
The child coughs or vomits consistently on drinking or eating
Seating and rehab
- Keystones must be ordered prior to surgery (measure thigh, knee and calf circumference, as well as mid thigh to mid calf length)
- The child must have a buggy or appropriate seating device
- The seating device needs to be checked while the patient is in hospital, prior to discharge
- The parents are able to bring the child in for Physiotherapy sessions every 2 weeks for 2 months
- AMD are made aware that child has been admitted for surgery on the day of admission
- Appropriate anti-epileptic and ARV medication is prescribed on admission.
Single Event Multilevel Surgery Including Femoral Osteotomy and Muscle Lengthening.
The Parent’s Guide
This information brochure should be used as a guide to help better understand your child’s surgical procedure and the rehabilitation that will take place at X Hospital. Every surgery is unique to the patient and every child’s recovery is different and may vary slightly from the information provided. If you have any queries please feel free to contact your Doctor or Physiotherapist
Why does your child need surgery?
The head of the femur moves out of its normal alignment in the acetabulum but does not fully come out (dislocate). After the migration percentage reaches 50% natural history studies have shown that the femoral head will eventually dislocate.
The head of the femur moves out the acetabulum.
This can be due to various factors but the most important in children with cerebral palsy is that there is a muscle imbalance. The inner hip muscles (adductors) pulling harder than the outer muscles (abductors).
Some children do not experience pain but their function is often affected, making sitting and standing difficult. Difficulty when performing normal daily activities like dressing and washing may also occur with hip subluxation or dislocation.
What is a Muscle and Tendon lengthening?
When the muscles around the hip are excessively tight they can contribute to poor posture and can restrict activities like crawling, sitting and walking. The tight hip muscles can also contribute to hip subluxation or dislocation. Your child may need lengthening of different muscles depending on their restriction. Your doctor will explain to you which muscles need to be lengthened.
- Iliopsoas muscle lengthening – helps straightening (extending) the hip joint.
- Hip adductor muscle/s lengthening – helps to separate/open the legs
- Hamstring/s muscle lengthening – helps to straighten at the knee
- Gastrocnemius and Soleus muscle lengthening – helps to bend (dorsiflex) the ankle up to the head . Lift foot upwards (dorsiflex)
What is a Femoral Osteotomy?
If the femoral neck is in excessive valgus (angled up too much) or in anteversion (the head is directed too far forward) then the joint is in poor alignment causing subluxation or dislocation. A surgical correction can be done – the femoral neck is cut and repositioned to point in the correct direction and angle. The bone is reattached with a plate and screws.
The plate and screws are left in the bone while it heals and are only removed at a later stage (usually one year later).
Below are two examples of the varus derotation osteotomy of the proximal femur done in combination with an adductor muscle releases
The period around the time of surgery can be very stressful. We have put together a list that may help you during this period. The first few weeks can be difficult but we are avaliable to assist you through this time Please do not hesitate to contact me (Dr Firth) or your physiotherapist with any questions or concerns you may have
What to bring to Hospital:
- A familiar toy, music or blanket.
- Two soft bath or sheet towels for wrapping the legs to keep the knees extended after the surgery. The size depends on the length of your child’s leg
The day of the surgery:
Check in at 12 midday at the main reception at Hospital. You will then be sent to the paediatric ward (or the adult orthopaedic ward for the teenagers). A nurse will ask you to complete the admission paperwork and your child’s temperature, heart rate, blood pressure and breathing will be assessed. Your child’s skin will be checked for any lesions. Please make sure you disclose any medication your child is taking and if they have any allergies. Your child will be changed into a hospital gown. A Paediatrician will see you either at this stage or in the post operative period.
You and your child will be seen by a Physiotherapist before the surgery. A detailed history will be taken so that the Physiotherapist can make sure that any questions you may have are covered before the surgery. The surgeon will discuss pre operatively if your existing physiotherapist will also be seeing your child whilst in hospital – I encourage this, but it is not always practical. There is a team of physiotherapist at the hospital who will see your child and they will liase with your existing physiotherapist.
Your child may be given medication to relax him/her and it will make them drowsy. The anaesthetist will see you either in the ward preoperatively, however, should this not possible your child will be seen on their admission to the theatre.
The surgery will take between two and six hours depending on what intervention is required. You can wait in the ward or at the Cafeteria in the main lobby. You will be contacted during the procedure for an update or once your child is in recovery.
Potential Complications of Surgery:
There are a number of potential complications associated with this type of surgery.
The following complications are rare but can occur.
- Anaesthetic related complications – please discuss these with the anaesthetist.
- Nausea and vomiting can occur post operatively for the first few days due to the pain medication given – further medication will be given to minimise this effect.
- Urinary tract infection – this is rare may be related to a catheter that may need to be inserted – we will observe for this.
- Wound infections – all precautions are taken to avoid this complication. Look out for redness, discharge, fever or irritability – early treatment with antibiotics are usually all that is needed.
- Muscle spasms can be problematic– medication including valium will be given routinely.
- Damage to nerves can occur during the surgery – all precautions are taken to avoid this complication.
- Pressure sores – these can occur around the sacrum and buttock area as well as the heels (especially in the cast) – it is extremely important to report if the child has any new pain or burning sensation in any of the above mentioned areas.
- Fractures can occur around the plate fixation of the femoral osteotomy – this can occur in the first six weeks or after the plate is removed – with caution, this complication can be avoided.
- The deformity may recur and require further surgery, especially if the surgery is done at an early age (under six years of age) – your child will need to continue to be followed up closely..
NICU (Neonatal Intensive Care Unit) or Adult Intensive Care:
After surgery, your child will be taken to the NICU if required. If your child is older then he/she will be admitted to either the adult ICU or High Care.This is to ensure your child is properly monitored by trained nursing staff after the surgery and to allow the nurses to administer stronger pain medication so that your child is comfortable. You will find your child with various devices attached to them so that their vital signs can be monitoired. They will have a drip in their arm administering fluids and medication. They may have an oxygen mask to help them receive a higher concentration of oxygen which is good for healing. Your child will have a urinary catheter sited. The catheter and drip will be removed after a few days. Your child’s legs will be wrapped with towels and bandages to keep their knees straight. There will be a wedge shaped pillow between their legs to keep them open and prevent the legs from crossing the midline. The legs may be elevated to control swelling. The toes are checked for swelling.
Transfer to the Paediatric ward / General Orthopaedic Ward:
Your child will be transferred to the general ward once their pain is under control and their vital signs are stabilised. This is usually after 2-3 days but can vary depending on what surgery is carried out.
Your child will be on a special blow up matress (ripple mattress) to prevent pressure sores and will be repositioned regularly to relieve pressure areas. Their bottom, sacral area, heels and back will be assessed for any red areas.
Eating and Drinking:
Your child will first be given small sips of water. Their appetite may be affected by the medication and anesthetic but it should return within a few days. They can begin with small amounts of food as soon as they have an appetite – this can be as early as the first night.
Your child will be bed bathed daily. The dressings are water resistent, they must not come off and moisture must not get under the dressing. If this occurs, report it to a nursing sister. The dressings will only be changed if needed before you go home.
Pain medication will be prescribed for your child and it will be adminstered by a nurse. It is important that your child takes it routinely. You may notice it cause drowsiness – this can be beneficial in the first few days.
Your child may experience constipation due to the anaesthetic and medication. Make sure they drink enough fluids through the day and report constipation to your doctor. A gentle laxative can be prescribed before discharge – this is however usually started day one post operatively.
Your child’s Physiotherapist will treat your child twice a day. This is important to prevent complications of bed rest (chest infections, pressure sores, joint contractures, blood clots).
- Day 1-3: Treat the chest, position the legs in a neutral position with the legs apart (abducted), address any postural abnormalities, pressure relief, begin gentle passive movements to the legs and arms, elongate any tight muscles, sit up to 450 only for eating (We encourage a family member to be present so that handling and precautions can be taught). Toes will be checked for swelling and also the position of the toes in the POP?
- Day 4: Continue with the above.,To turn over whilst maintaining hip abduction and lie in prone for a few minutes if tolerated
- Day 5-7: Begin sitting on the edge of the bed maintaining “straightish” knees, sitting in a buggy or wheelchair and going for a ride in the ward. Place pillow/s on foot rests to maintain some knee extension. Education about washing, toileting and possible complications. An abduction pillow willl be ordered to take home. A home program will be issued by the physiotherapist
- Before discharge it is vital that you know how to handle your child. You need to be aware of precautions,i.e. what your child can and cannot do. You may need a wheelchair for use at home. You may need a bed pan. Your childs tummy must have worked before discharge. You must understand what your medication is prescibed for, when to take it and for how long. You have your next physiotherapy appointment booked and your planned follow up visit with myself. If you have any questions please feel free to ask myself or your Physiotherapist.
Average Length of Hospital stay:
- Muscle lengthening: 2 to7 days
- Additional femoral Osteotomies: 7 to 14 days
Once discharged you will need to collect your child’s medication at the pharmacy in the main lobby after 9am. The nurse will help you complete the discharge paperwork and give you a follow up appointment date. Make sure you pack your abduction pillow and Xrays. You can leave between 10am-12 midday. You can pull your car up to the main ambulance entrance to collect your child. If you need special assistance please let your nurse or Physiotherapist know before leaving the paediatric ward. On discharge, your child should be well enough to travel and he/she can sit as per usual in a car restraint. If your child’s legs are not in POP, it is suggested their legs remain wrapped in towels ( to keep knees straight) whist they are tranferred and transported.
Management at home:
- The wounds will have disolvable stitches which will be covered with a waterproof dressing. Do not remove the dressing for two weeks after discharge unless otherwise specified. Please replace dressings if they start to come off or get wet – please call me if there are any concerns regarding the wounds. (Once removed wash the area with warm water and apply aqueous cream.
- Use the abduction pillow for 6 weeks after discharge when in bed – when in a chair ideally try to keep the legs apart at about 45 degrees.
- Bathing is not possible whilst in POP nor until wounds have healed. Do NOT try the cling wrap over the POP – it does not seal and the POP/dressings WILL get wet.
- Follow the precautions for 6-12 weeks after the surgery as this is the period bone takes to heal.
- If you notice the wound is red, hot and oozing or that the calf or groin is red, swollen and painful notify the doctor immediately.
Additional Comments that may be helpful.
Further Surgical Operation Comments / Notes from Parents, Children and Personal Experience (Written by Gillian Shead, NDT Physiotherapist)
Children need to feel in control of their movements. When moving them, pre warn them what you plan to do, and ask them to assist with the movement. Let them initiate the movement and then you assist there after. Generally, surgery is more traumatic for children who have less voluntary control.
There is NO rush during the rehabilitation. Go at child’s pace. Listen to child and let them be in control. Certain activities are not negotiable like prone lying and standing (if allowed) BUT never forced on the child – get the child to “buy” into the idea. Firmness is needed but never force. Persuade but never insist
Anxiety from the child and parents has a negative impact on this traumatic event. Manage your own anxiety with time off/stress release/discussions/medication. The child needs you to be calm and in control. They need to be able to trust those caring for them. They need reassurance. Often a positive encouraging comment from Dr gives them belief that ‘all is okay’. The Physiotherapist’s role is to assit and not to bring anxiety into the situation. Keep your own anxiety to yourself.
After removal of POP and when wounds have healed, hydrotherapy is very beneficial. It can begin at home in a deep bath. The support and warmth of the water gives the children confidence to move again. Besides being fun, it also assists in taking weight through their legs and regaining their balance It is particularly valuable for the older heavier child/teenagers.
The leg’s response to pain and fear is leg flexion (bending at hip and knee). Many children with cerebral palsy move in a mass flexion position. So, post surgery, the child may move into this mass flexion position despite surgical release of those muscles This can be avoided if their knees are kept straight with the aid of wrapped towels, keystone splints or knee braces. They can continue to wear these until they are comfortable to remove them.
If you child is in long leg POP’s, remember that removing the POP’s may result in them feeling insecure and afraid again. After the POP is removed they may move into this mass flexion position again. Keeping their knees straight will help them to adjust to the new sensation, give them time to control their knees with their muscles and also allow you, as parents, to feel confident to move them without their knees bending.
Surgery changes the child’s sensory system by interrupting the sensory and motor pathways. The child needs to adapt to the sensation of a new position and to use the leg in a different alignment. This is particually so with a child who was very pre-term. Give yourchild time to adjust, some children take longer than others. Some are more fearful. They may feel lost in space. Their “brain sensation/movement programs” have been interfered with and they have to set up new ones. The spasticity/dystonia was giving them stability, then they had stability via the POP, bracing or towels, then these were removed and they have to re-adjust again. . Muscle spasms can happen post operatively. This is best managed by medication that Dr Firth has prescribed. Deep pressure on that muscle and ice has a calming effect. Teach child voluntary movements opposite to the pull of the spasm– try to get child to move opposite to spasm as volition is better than a passive pull.
The children interpret “pain” differently to how we feel it. Some “laugh” when painful. Pain threshold varies from very low to very high or they can have a combination of both. From low in skin touch to high in deep touch and visa versa. The pre-term child “feels’ sensations differently to us.If your child continues to complain about pain in a specific area this must be reported to Dr or the Physiotherapist. It could be a sign of an area of pressure. More regular change of position is recommended and an ice pack can be placed over the area. Bad odour from the POP must be reported immediately. Smelly toes are acceptable.
A packet of ice can be placed on plaster for pain or discomfort, even for itching. Itching can mean the wound is healing, but also because the the skin is needing air.
You can only put your fingers into the POP to clean or just touch the skin. No knitting needles or rulers.
NO playing in sandpits whilst in plaster
Do one new task/activity at a time. It is easier for the child to adapt. It also enables problems to be idenified to one event.
All children must lie in prone (on their tummy) – over pillows after 2-3 days and continue therafter. This is to promote hip and back extension which assists in standing and walking, it also relieves pressure on heels and on the sacral and gives an opportunity to clean and do skin care. It is also useful to change nappies in prone.
After a femoral osteotomy children can stand after four weeks – this may be done earlier with good support under the guidance of the physiotherapist – however this MUST be discussed with Dr Firth before hand.
If possible, go on holiday at some stage – so as to take focus off the operation.
One week post-opratively try get back into your normal lifesyle routine.
Expect school academics to regress. Try get lots of school work in prior to surgery. Teacher can give school work to be done at home because the children need to be kept busy and mentally stimulated.
Some parents have chosen to use zinc tablets and cream to promote healing. This is a personal choice.
For the boys who have had hip adductor surgery, their testicles may be bruised and swollen – this is normal.
If your child has POP that has to be removed. It is suggested that you take ear phones and an Ipod or music for child to listen too. The plaster saw makes a scary noise and can it can be traumatic. Dr Firth will usually use plaster that can be removed in the bath without the need for the plaster saw.
At your follow up visit with Dr Firth, ask him to please write down the details of the proceedures done. You need to know and understand so that you can relate to others and also to enable you to remember years later.
G Firth (Orthopaedic Surgeon)
G Roberts (Physiotherapist)
G Shead (Physiotherapist)