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SPINE BIFIDA - PATIENT INFORMATION
How are the other associated problems managed?
1. Management of Contractures and deformities:
When an infant with Spina Bifida is born, some joints or muscles in the legs may be contracted or deformed. A contracture is a shortened muscle, which prevents the full range of movement being carried out at a joint. The joint may become stiff. A deformity is an abnormal position of a joint. The joint may or may not move at all. It is important to move each joint in the lower limbs through full range of movement every day even if contracture and deformities are not present. This will prevent the joints from developing contractures.
Treatment of contractures and deformities:
» Stretching: If a full movement of joint is not possible. The child needs daily stretching exercises.
» Positioning: Positioning of the infant or child can assist in correction and prevention of contracture and deformities. The child should not remain in one position for long period of time.
2. Management of orthopedic problem:
The deformities and contractures, which are not managed by the regular stretching exercise and physiotherapy, are treated surgically.
3. Rehabilitation:
An infant with spina bifida and hydrocephalus will usually have delay in development. This may be present from birth. It is due to several reasons
» Long periods of time in hospital after birth
» Parent's concerns about having infant with spina bifida and knowing how to handle the child
» The infant's heavy head due to hydrocephalus making it difficult to gain head control.
» The infant's difficulty in learning to move due to muscle paralysis, contractures and deformities.
AIDS used in rehabilitation
All children should be given opportunity to stand and walk. The child can be stood as soon as he has sufficient head control and balance in his body. Standing encourages the muscles that hold the body up to walk. It prevents contractures and strengthens leg bones. If the child does not have muscle strength in the legs, aids such as gaiters, forward lean standers or an upright stander may be used.
Learning to walk should be fun and not a task. The child needs to gain confidence slowly. Special aids such as splints or calipers may be necessary to support the legs during walking. As the balance and confidence with walking improves; the child may be able to use crutches or walking sticks for support. For some children the effort of walking is too great. This may be difficult for the family to understand and accept. They may need to talk about it and not push the child to walk. These children may use a wheelchair or trolley for all or part of the body.
SCHOOL ISSUE:
School is an important place for learning, developing skills and social interaction. Children with spina bifida can enjoy the usual range of school activities. Some children with spina bifida are usually mentally normal but majority of the children will have learning difficulties. The children may be good at some activities and have difficulties with other activities. Given appropriate help and guidance children with learning difficulties will be able to benefit from going to school. So schooling is a very important issue in children with spina bifida and parents must be encouraged to send their children with spina bifida to school.
4. Management of bladder and bowel:
Most children with spina bifida will have some problem with bowel and bladder. This will range from full control to total incontinence. Parents will need to discuss the most appropriate management for their child?s bladder and bowel problems. The aims of the treatment of bladder incontinence are:
» To keep the kidney healthy
» To keep the child and his cloths dry and free of urine for reasonable acceptable time.
Bowel: Most bowel problems in children of spina bifida are managed by diet to regulate stool consistency and by toilet training.
» Diet- Food controls the consistency of the stools in all children. For the children with bowel incontinence, food can be used to make the stool firmer or softer depending on the amount of fiber it contains. High fiber diet and if required laxatives are used.
» Toilet training
» Daily enemas- In some patients, daily enemas are helpful. Some patients require only one daily enema but in few patients enemas may be required upto 2 times a day.
1. Management of Contractures and deformities:
When an infant with Spina Bifida is born, some joints or muscles in the legs may be contracted or deformed. A contracture is a shortened muscle, which prevents the full range of movement being carried out at a joint. The joint may become stiff. A deformity is an abnormal position of a joint. The joint may or may not move at all. It is important to move each joint in the lower limbs through full range of movement every day even if contracture and deformities are not present. This will prevent the joints from developing contractures.
Treatment of contractures and deformities:
» Stretching: If a full movement of joint is not possible. The child needs daily stretching exercises.
» Positioning: Positioning of the infant or child can assist in correction and prevention of contracture and deformities. The child should not remain in one position for long period of time.
2. Management of orthopedic problem:
The deformities and contractures, which are not managed by the regular stretching exercise and physiotherapy, are treated surgically.
3. Rehabilitation:
An infant with spina bifida and hydrocephalus will usually have delay in development. This may be present from birth. It is due to several reasons
» Long periods of time in hospital after birth
» Parent's concerns about having infant with spina bifida and knowing how to handle the child
» The infant's heavy head due to hydrocephalus making it difficult to gain head control.
» The infant's difficulty in learning to move due to muscle paralysis, contractures and deformities.
AIDS used in rehabilitation
All children should be given opportunity to stand and walk. The child can be stood as soon as he has sufficient head control and balance in his body. Standing encourages the muscles that hold the body up to walk. It prevents contractures and strengthens leg bones. If the child does not have muscle strength in the legs, aids such as gaiters, forward lean standers or an upright stander may be used.
Learning to walk should be fun and not a task. The child needs to gain confidence slowly. Special aids such as splints or calipers may be necessary to support the legs during walking. As the balance and confidence with walking improves; the child may be able to use crutches or walking sticks for support. For some children the effort of walking is too great. This may be difficult for the family to understand and accept. They may need to talk about it and not push the child to walk. These children may use a wheelchair or trolley for all or part of the body.
SCHOOL ISSUE:
School is an important place for learning, developing skills and social interaction. Children with spina bifida can enjoy the usual range of school activities. Some children with spina bifida are usually mentally normal but majority of the children will have learning difficulties. The children may be good at some activities and have difficulties with other activities. Given appropriate help and guidance children with learning difficulties will be able to benefit from going to school. So schooling is a very important issue in children with spina bifida and parents must be encouraged to send their children with spina bifida to school.
4. Management of bladder and bowel:
Most children with spina bifida will have some problem with bowel and bladder. This will range from full control to total incontinence. Parents will need to discuss the most appropriate management for their child?s bladder and bowel problems. The aims of the treatment of bladder incontinence are:
» To keep the kidney healthy
» To keep the child and his cloths dry and free of urine for reasonable acceptable time.
Bowel: Most bowel problems in children of spina bifida are managed by diet to regulate stool consistency and by toilet training.
» Diet- Food controls the consistency of the stools in all children. For the children with bowel incontinence, food can be used to make the stool firmer or softer depending on the amount of fiber it contains. High fiber diet and if required laxatives are used.
» Toilet training
» Daily enemas- In some patients, daily enemas are helpful. Some patients require only one daily enema but in few patients enemas may be required upto 2 times a day.

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