Tips to cope up with Cerebral Palsy

From Cross the Hurdles

Physical Disabilities

Some Important Days

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Food, Nutrition and Eating

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People with cerebral palsy may have difficulty in eating. Even after birth, babies feeding either from the breast or bottle may have difficulty. There can be a number of reasons why someone with cerebral palsy may be having difficulty eating. These may include structural abnormalities, psychological or behavioural conditions, motor or sensory impairments, or something else which may not be related to their cerebral palsy. It is necessary to have a multidisciplinary team which should include a therapist (who is likely to be the team leader), a physiotherapist, an occupational therapist, a dietician, a doctor, a health visitor (in the case of children), a nurse (in the case of adults), the person’s carers and the person with cerebral palsy themselves.

Mealtimes are not just about eating but can also provide a valuable opportunity for communication and interaction between friends and families. They should be enjoyable occasions and as stress-free as possible.

Babies with cerebral palsy should start to be weaned or introduced to an adult diet without withdrawing from breast feeding at the same age as babies without the condition i.e. around 6 months of age. Weaning may take a longer time and considerable persistence may be needed. It can be a frustrating process. But do not lose hope. Many babies with cerebral palsy find eating semi-solid food easier than sucking and so may thrive better. Prolonged use of bottle-feeding should be avoided but not at the expense of nutritional intake.

Balanced diet is an important factor in maintaining health and well-being. This can sometimes be difficult to do for some people who experience difficulty eating, especially if they can only eat certain types of food or can only manage small amounts. Sometimes a food supplement is suggested or prescribed to help ensure that a person’s nutritional needs are being met. Speech and language therapists can also advise especially in relation to the food texture and consistency an individual will find most manageable.

Many people with cerebral palsy would prefer to be able to sit at the table and feed themselves. Let them do so even if it takes longer or is messier. Being able to choose what one eats and when one eats it is one of life's pleasures for many people. Taking the time and effort to help a person to develop these skills can sometimes also help them in other ways, such as development of language, greater awareness of position and movements and hand-eye co-ordination.

Bite reflex is when the person being fed immediately 'locks' their mouth onto anything that is introduced into it. They have no control of this and it may only happen occasionally. Speech and language therapist can advise on techniques that may help with this and demonstrate how to 'unlock' the jaw if the reflex occurs. To lessen the injury to the mouth and teeth use of a plastic spoon is recommended. Choking is caused by poor positioning of the head and trunk. Regular choking can cause considerable anxiety at mealtimes for both the enabler and the person with cerebral palsy. In the worst case scenario it may even result in death. Receiving advice about how to react to choking may help lessen any anxiety and make those concerned more confident that they know how to react in an emergency. A doctor, physiotherapist or speech and language therapist should be able to advise. Persistent choking should always be investigated by the doctor.

Non oral feeding with the help of feeding tubes may be necessary for some people who are not able to suck or swallow sufficiently, to get proper nutrition or to avoid food passing into the lungs rather than the stomach. But remember that those being tube fed should still be included in the social interaction of mealtimes.

Constipation

It is common in people with cerebral palsy, especially if they have reduced mobility. An underlying medical problem, poor diet and/or inadequate fluid intake may be the cause. Add more fruit, vegetables and whole grains to the person’s diet.

Dental care

Sometimes difficulty in feeding can result from the way the teeth close together or as a result of pain caused by a dental problem. Dental care for people with cerebral palsy is important because they may take certain medicines that can increase the risk of gum problems. Good oral hygiene can be more difficult for those that have limited control in opening their mouth. Start oral hygiene in the first year even before the child has teeth. Begin by just wiping the inside of the child’s mouth with a moist cloth – this will get him used to having his mouth cleaned. Tooth brushing should start by age 18 months and can be initiated with soft brushes. Brushing should include the gums and tongue as well as the teeth.

How to feed

Most babies can normally be fed with the ordinary spoons designed for young children. As children mature and begin to attempt to feed themselves, there are as number of utensils that may be helpful. Special plates, bowls, cups, adapted cutlery and non-slip mats to help keep the dish in place are all available. Also there are special bibs and other items to help keep food off clothing.

When items are being obtained for adults it is important to consider whether the appearance of them makes them suitable for someone of that age. Equipment and utensils should enhance a person's sense of self-reliance and independence. Bibs with pictures of teddies or bunnies are not appropriate for adults!

Positioning

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For those who experience poor trunk control or are unable to support their own heads. Sometimes it is necessary for the person assisting with eating to help support the head with their hand. A person should never be fed with their head falling backwards as this will cause a possible risk of choking or vomiting. Positioning is important for the person with cerebral palsy to be in the best possible position for eating. This will vary from person to person depending on their medical condition. The physiotherapist or occupational therapist are the best people to advice on positioning.

Drooling

It can be troublesome for a person. Food can dribble or a person may be unable to wipe their mouth themselves. In addition to making mealtimes messier it has potential social implications. There are health and hygiene implications for people who drool a lot of the time. The skin around the mouth, chin and neck can become red and sore; dehydration may occur because of fluid loss; there may be problems with eating; infections may be more easily transmitted; and choking is more likely, as are chest infections. Treatments may include:

  • reward or prompting to encourage swallowing
  • surgery, where salivary glands are usually turned towards the back of the mouth so that saliva runs towards the back rather than the front of the mouth
  • exercises to increase muscle tone, improve oral-motor (swallowing and chewing) function and improve sensory awareness
  • medication, where drugs might be used to dry up salivary secretions
  • removal of a salivary gland may be considered in extreme cases

Choking

Food can gather in the mouth and it is likely to stick there. If this occurs it needs to be removed during the meal to avoid the possibility that it may later drop down and cause choking.

Hypersensitivity

Some people with cerebral palsy will experience additional difficulty with eating because they are unusually sensitive to being touched on their face or in their mouth. They may have a strong reaction to the temperature or texture of their food or drink. A speech therapist or occupational therapist may be able to advice on ways of working on this. Often a programme of activities to gradually get the person used to such sensations and build up their tolerance to them may be recommended.

Reflux

There can be a problem of reflux which can result in discomfort during or after eating. On occasions it may cause vomiting. Investigation by a doctor is suggested. When there is a strong, inappropriate and unconscious forward movement of the tongue that pushes food out of the mouth is called tongue thrust. This should not be confused with behaviour that looks similar but is really a conscious attempt by the person to communicate that they do not wish to eat what is in their mouth. A speech and language therapist can advise on techniques that may help with tongue thrust. Frequent vomiting may be distressing for all. Sometimes the problem can be helped by improved positioning and avoiding lying down too soon after eating.

Other activities

Cerebral palsy can cause difficulty with muscle tone and control. Your child may have delays speaking or have speech that is hard to understand. Reading with your child and having your child name objects in the book or read aloud to you can strengthen his speech skills. Finding and sharing books together is a great way to bond with the child and will help the child's development at the same time.

Each time you read to your child, you are helping his brain to develop. Reading to your child helps him understand that there are words and pictures on the page. So if you plant the seed of reading that will stay with your child throughout his life. Try reading for a few minutes at a time at first. Then build up the time you read together. Your child will soon see reading time as fun time and learning time! Here are some things you can try:

  • Buy books or borrow books from the library that have thick, sturdy pages.
  • Find books that have rhymes.
  • Clap your hands and help your baby clap along to the rhythm of the words.
  • Read aloud. Talk about the pictures and read the text. Help your toddler point to objects you name in the book.

Home Safety

People with cerebral palsy are prone to falls and other accidents, especially if they are affected by seizures. Following are some ways to improve safety and avoid injuries.

  • Supervise activities involving the use of sharp objects, such as knives.
  • Have your child wear a protective helmet if he or she frequently falls or has seizures.
  • Check your child's shoes often to make sure they fit properly, give good support, and are in good condition. Shoes with soles that grip, such as those made of rubber, are safer than smooth-soled shoes.
  • Pad sharp corners on furniture and countertops. Smooth out any rough surfaces under kitchen and bathroom countertops and keep surfaces cleared.
  • Use protective devices, such as side rails on beds and straps or seat belts in chairs. Install handrails in the bathroom around the toilet and in the shower.
  • Use sturdy, heavy furniture that cannot be easily overturned.
  • Keep walkways clear of clutter and other objects, such as throw rugs, that can cause falls, and do not polish floors.
  • Keep objects that are frequently used within easy reach.
  • Don't let electrical cords hang low or lie on the floor.
  • Use skid-proof mats on floors and skid-proof placemats under bowls and plates.

Enhance abilities

To enhance the abilities of the child, one way is to not hand your child items she wants, but to place them just out of reach, so that she has to move to grasp them. This helps stimulate your child's movements and coordination. Though she might take longer to complete tasks, letting her do them will maintain (or increase) her capabilities.

Bath time

Bath time can be fun. It is a chance for the kids to splash and play. It is also a great time for in-home therapy. Child can practice dressing, do range of motion exercises and work on speech. It is an ideal time for both fun and education. Bath time can facilitate learning, as well.

Toileting

Many kids with cerebral palsy have spastic abdominal muscles, poor muscle tone or difficulty controlling their bodies. This makes toilet training a difficult challenge. One approach is to make sure they eat lots of fruits and vegetables and have significant amounts of fiber.Try to place your child on a potty chair a half hour after a meal. Reward him if he's able to use the toilet successfully.

Patience for care giver

  • Acknowledge that your situation is a frustrating one and that anyone could become impatient.
  • Focus on how achieving small goals will your child become more self-reliant.
  • Build some time for yourself into your daily schedule.
  • Join a support group.
  • If you try this and still find yourself frustrated and impatient, speak to a counselor

Recreation

  • You need to learn to have fun together with your child, whether by playing peek-a-boo, as you would with any infant, or tickling games, etc.
  • Another way to have fun is through exercise.Exercise will help your child strengthen muscles and relieve stress. Some forms of exercise that children with cerebral palsy may enjoy include: ball games, swimming, yoga, dancing and horseback riding.