Topic: A Guideline To Physiotherapy Treatment For Childre (Read 96 times)
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A Guideline To Physiotherapy Treatment For Childre « Thread Started on Mar 18, 2007, 2:17pm »
A Guideline To Physiotherapy Treatment For Children With Epidermolysis Bullosa Published by DebRA UK
Michelle Wood Clinical Specialist Physiotherapist
Great Ormond Street Hospital For Children, London WC1N 3JH
INTRODUCTION
This booklet is designed to be a guide to the physiotherapy treatment for children with Epidermolysis Bullosa (EB). It is probably most useful for children with Recessive Dystrophic EB (RDEB). However as there are a wide range of symptoms and severity all children with EB are likely to benefit from physiotherapy to some degree.
In all types of EB blistering is prominent. Children with dystrophic EB often have chronic wounds in addition to blisters, all of which are associated with the complications of infection, scarring, itching and pain. These can lead to restriction of movement and thus affect functional activities and ultimately everyday life.
Physiotherapy aims to maintain and restore function as much as possible by using various methods, e.g. exercises or other therapeutic activities. Any child with altered movement, an altered walking pattern or deteriorating function will benefit from some form of physiotherapy. This booklet is intended to give general advice and be just a guide. More individual plans can be gained from assessment by a paediatric physiotherapist.
WHY DO CHILDREN WITH EB REQUIRE PHYSIOTHERAPY?
EB is a rare skin disorder. The skin is extremely fragile and even the mildest friction may cause a blister to form. shearing forces lead to skin loss, often leading to chronic wounds particularly in children with dystrophic or junctional EB. Children with other forms of EB may develop deep cracks or fissures in the skin. This can make movement very uncomfortable and actually result in a reluctance to movie.
What tends to happen is:
there is a reluctance to move due to pain dressings and bandages used to protect skin also restrict movement scarring of the skin can restrict movement muscles become tighter as limbs aren't moved through their usual range of movement and joint stiffness occurs. contractures (tightness in the muscles) occur as joints become stiff and 'stuck'. these contractures prevent normal movement and function is affected.
A vicious circle occurs ----> less movement ----> weaker muscles ---->more contractures ----> reduced function ----> less movement etc. Physiotherapy tries to minimise the effect of these problems. Movement of joints near to the sites of blisters is vital to help prevent movement from being permanently lost.
The treatment techniques used will vary from individual to individual depending on skin fragility.
WHAT CAN YOU DO AND WHEN CAN YOU DO IT
As soon as a little stiffness is noticed it is a good idea to start treatment. Although it may seem to be just a temporary tightness due to a blister in a particular area making movement uncomfortable, it is important to introduce treatment early to prevent increasing loss of movement.
TREATMENT OPTIONS
PASSIVE MOVEMENTS SPECIFIC EXERCISES DEVELOPMENTAL THERAPY HYDROTHERAPY SPLINTAGE EQUIPMENT
PASSIVE MOVEMENTS
It is very difficult to do formal exercises with infants and small children due to limited understanding and co-operation. This group will commonly avoid movement in response to pain and are therefore at risk of contractures. It is important to be aware of this and encourage movement as much as possible.
Dressing changes and bath time are a good opportunity to check all joints can be moved through their normal range. This can be done by observing your child or gently taking the limb through its normal movement range. Stiffness can therefore be detected early. If any reduced movement is found the joints can be moved passively by the carer. This is carried out by moving the limb gently and slowly to the limit of it's movement. The limit may be pain or it may be stiffness. Hold that position for about 5 seconds and return to the starting position, repeating up to 5 times.
One of the common areas of tightness is the tendon at the back of the heel. When we lie down the gravity tends to pull the weight of the foot down and the tendon is pulled into its shortened position. Also the smaller children tend to have lots of dressings in this area for protection and they can sometimes limit movement. Maintaining movement here is particularly important to prevent problems with walking occurring.
This picture shows how gravity can pull the heel tendon into a shortened position. If it becomes too stuck walking will be affected.
This is an example of a passive stretch. Use a flat hand to obtain an even pressure on the sole of the foot, this reduces the risk of friction. Then move the foot up to the end of available movement and hold the stretch for 5 seconds. Repeat up to 10 times.
SPECIFIC EXERCISES
These exercises target joints that are at risk. When any reduction in movement is noted it is important to be aware as range can be lost very quickly and joints become stuck. Often this may be transient i.e. a sore blistered area that needs to heal, but to prevent scarring from limiting range permanently it is important to move the area as much as possible.
The exercises are best done several times a day if there is a specific problem. If there is no specific problem area the exercises can be used to monitor joints and pick up any changes early.
Specific exercise programmes can be provided by a physiotherapist if you have one. These are some of the most important if you don't.
LOWER LIMBS
HIPS
Hips can become stiff in a flexed posture as a result of sitting for long periods. Keeping them as straight as possible will help maintain good upright postures when walking.
Prone lying (lying on your tummy) is very important and should be done every day if possible. In the evenings lying on your tummy whilst watching TV or reading is a good opportunity.
This position will give your hip muscles a good stretch. If your tummy is sore - lying over a pillow may help.
Start with trying to lie on your tummy for about 10 minutes and gradually build up to 30 minutes if you can. Standing and extending your hips will also help but is not quite as effective.
KNEES
Blisters can be common at the backs of the knees, therefore straightening them fully can be quite uncomfortable. This can make walking quite difficult leading to an increased risk of the muscles around the knees becoming tight.
In the position shown push both knees down onto the bed and pull your toes up at the same time. Hold for a count of 5 and relax. Repeat 10 times.
In the same starting position push both knees down, pull your toes up and then lift one leg just off the bed. Hold for a count of 5 and slowly lower. Repeat 10 times.
ANKLES
These can become very tight particularly if feet are sore and walking pattern changes in response to pain.
Sitting with your legs out straight pull both ankles up as far as they will go then point them away as far as they will go. Then turn them in and out. Repeat 10 times. This will keep them mobile in all directions.
UPPER LIMBS
SHOULDERS
The armpit is a common place to be sore as clothes often rub the skin here. If your shoulder becomes stiff your ability to reach up in the air for objects will be limited.
Sitting in a supported position take your arm up and forwards as high as it will go, hold the stretch for five seconds and relax. Repeat 10 times.
ELBOWS
It is important to keep elbows as mobile as possible as they are important in reaching for objects.
As shown in the picture, practise bending and straightening as fully as possible. The practise turning the palm up and down.
HANDS
Tightening of the fingers and web spaces is particularly common in RDEB. It is important to check that your fingers will fully straighten. Try getting them to flatten on a table, if they won't go completely flat it is a sign to start exercises.
The web spaces between the fingers can tend to creep up -unfortunately exercises do not seem to prevent this but dressings/splintage can help. An occupational therapist can give advice on hand splints.
With fingers a little apart, straighten the fingers fully and try and flatten them against a hard surface (table etc.). Hold for a count of 5 then repeat 10 times.
NECK
Often the neck can stiffen, particularly if there are sore areas which make it uncomfortable to turn your head.
Turn your head to the right fully then to the left fully. Try to keep your shoulders facing forward as you do this Whilst looking straight ahead, take your left ear down towards your left shoulder and then repeat to the right. Look down to the floor and then up to the ceiling.
These exercises will take your neck through its usual range of movement.
MOUTH AND TONGUE
Some children with certain types of EB will find tightness in the corners of the mouth will stop it opening fully, this can make teeth cleaning and eating a little difficult.
Open the mouth as wide as possible and make an "O".
Stick your tongue out as far as possible and then move it up and down and side to side.
DEVELOPMENTAL THERAPY
All children need to spend time in different positions in order to develop normally. They need to be able to explore their environment and have opportunity to develop balance reaction etc.
It can be very tempting to protect children with EB and keep them still in the hope of avoiding blisters. This however can lead to developmental delay and cause the child to become quite frustrated.
We recommend that all children are placed in a variety of positions that can help stimulate their development but obviously minimising the risks of damage/injury will keep them as safe as possible. Some of the best positions are:
PRONE LYING Placing a child on their tummy will help them to improve their head control and develop their upper body strength. It is particularly good for encouraging the back muscles to strengthen and promoting pushing up on their forearms. This position will also give the hip joints a good stretch. Children can be laid on soft surfaces as protection or over pillows if the skin on the abdomen is sore. We recommend that the child is always supervised in this position.
SITTING Children learn sitting control and saving reactions by falling and losing their balance, so it is important these children also have the opportunity to experience this. By creating a soft safe environment with pillows/cushions etc. , it is possible for these skills to be practised. By placing toys just out of reach, children can be encouraged to reach out of their base of support and thus learn balance reactions. Again, if toys used are soft the play area will be safe.
CRAWLING This can be an anxious time for carers when children develop independent mobility and want to explore their environment. For those children that have very fragile skin and blister easily measures such as putting extra dressings on vulnerable areas (knees, elbows, wrists etc) can make weight-bearing safer. Some children do however miss this stage out completely and use bottom shuffling or rolling to gain some independent movement.
STANDING Weight-bearing through the hips and knees is very important for bone formation. We encourage standing as much as possible. Children with EB are often late to walk and this is often due to a combination of factors - pain and discomfort being a large feature.EB simplex children commonly present with very sore feet and altered foot posture as they try to put as little of their foot on the floor as possible in response to pain. In these circumstances physiotherapists can provide 'standing frames' (see picture).
These lessen the work of standing but ensure some weight is taken through the legs. The muscles and joints are given a good stretch in a safe and comfortable position.
By stimulating developmental milestones such as rolling and crawling the child is given the opportunity to keep joints and muscles moving through their usual range and lessen the chance of secondary complications such as contractures etc which may hamper the child's functional abilities.
HYDROTHERAPY
Another excellent place to do exercises is in a hydrotherapy pool or if you don't have access to one - a normal swimming pool. The benefit of a hydrotherapy pool is that it is heated to a slightly higher temperature. This causes muscle and general relaxation.
The benefits of exercise in water is well know. The buoyancy of the water can be used to good effect to either assist movement, to gain range or to resist movement to strengthen muscles. The limbs are fully supported making movement much more comfortable.
There is a risk of infection so some precautions should be taken. We advise that the children keep their dressings on as a protection whilst in the water.
Sometimes getting in the pool can sting a little due to the chlorine but in our experience this seems to settle very quickly. Care should be taken with flotation aids as some can have quite sharp edges, there are some foam ones on the market that are very effective.
If you have a physiotherapist they can tailor the exercise programme to your needs. It is advisable to check with your dermatologist first before starting a swimming programme.
SPLINTAGE
Occasionally if a limb is really sore the position of comfort it is held in may cause it to become tight eg blistering at the back of the knee may mean it is held bent because straightening it hurts too much. Splints can be used to rest a joint and to support it in a position of comfort but giving it a slight stretch at the same time.
There are lots of soft user friendly materials now available that can offer lots of padding and avoid friction. Hand splints are usually made by occupational therapists. They are very important post-operatively after any hand surgery that may occur but also can be used with exercise to maintain range of movement in the hands at the first sign of tightness.
EQUIPMENT
Advice can often be given for all sorts of equipment that may aid function:
Foot wear - it can be very difficult to find good comfortable foot wear that doesn't rub or cause blisters. It is important to have a wide 'box' for the toes, no internal seams, an arch support and soft leather. Othotists can help with advice/bespoke footwear.
Seating - sometimes it may be necessary for a physiotherapist to issue equipment that will aid development. Seating for small children may be provided to help achieve good posture.
Standing Frames - these are used to provide a safe and comfortable form of standing. This is very good for bone formation and stretching of tight muscles. Standing alone may often prove to be too uncomfortable but using the equipment can support some of the body weight and maximise the benefits of weight bearing. A physiotherapist would provide this sort of equipment.
Due to the nature of EB there will be days when pain/discomfort will make activity uncomfortable. On those days exercises/activities may not be possible.
This booklet aims to show that by close monitoring problems can be picked up quickly and we can help to prevent loss of range of movement and muscle power.
Daily exercises have to be realistic but they can make a difference. It is then possible to promote the best quality of movement and function for that individual.
MICHELLE WOOD CLINICAL SPECIALIST PHYSIOTHERAPIST GREAT ORMOND STREET HOSPITAL FOR CHILDREN NHS TRUST email: woodm@gosh.nhs.uk website: www.debra.org.uk
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