a life story about a hydrocephalic, a patient of cerebral palsy, her family, childhood and health!
Jan 4, 2009
Cerebral palsy @ Kelumpuhan otak
This entry will be long but it worth reading, not just for parents of hyrocephalic but to all mothers and fathers out there. Wannabe parents also should read this info as there are many people out there who have CP and this will explain why they behave in their own, that I shall call, unique ways. Have you seen them around?
Btw, sorry ler... che' pi omit Read More dulu tu... kesian kat pembaca yang guna snailmyx or similar. Nak klik 2-3 kali bakal membuang masa mereka!
Bloghopping here and there... but at last I was attracted to share about 'Cerebral Palsy' (CP) after googling for the word 'walker'. We haven't use any baby walker since the birth of Mastura as we thought that it was unworthy to buy one. But since it is good for balancing up the muscles, we think of buying one for Syafiah. Have I told you that Kak Rosliza (one of the amazing stories) used walker to help her son when he was a baby? Amazingly, he's abled to walk on the age of 2.
For info, there is a term of 'CP walker'. I'm not sure whether there are any for babies or not. But you can see one of them as below:
Back to CP...
What is CP?
CP is a term used to describe a group of chronic conditions affecting body movements and muscle coordination. It is caused by damage to one or more specific areas of the brain, usually occurring during fetal development, or during infancy. It can also occur before, during or shortly following birth.
"Cerebral" refers to the brain and "Palsy" to a disorder of movement or posture. If someone has CP it means that because of an injury to their brain (cerebral) they are not able to use some of the muscles in their body in the normal way (palsy). Children with CP may not be able to walk, talk, eat or play in the same ways as most other children.
CP is neither progressive nor communicable. It is also not "curable" in the accepted sense, although education, therapy and applied technology can help persons with CP lead productive lives. It is important to know that CP is not a disease or illness. It isn't contagious and it doesn't get worse. Children who have CP will have it all their lives.
CP is characterized by an inability to fully control motor function, particularly muscle control and coordination. Depending on which areas of the brain have been damaged, one or more of the following may occur:
However, the movements, body positions, and related problems can be improved or made worse depending on how we treat the child and how damaged his or her brain happens to be. The earlier we start, the more improvement can be made. That's why Syafiah has her occupational therapy (OT) sessions.
An occupational therapist specializes in improving the development of the small muscles of the body, such as the hands, feet, face, fingers and toes. These therapists also teach daily living skills such as dressing and eating, as well as making sure children are properly positioned in wheelchairs. They may teach your child better or easier ways to write, draw, cut with scissors, brush their teeth, dress, and feed themselves. Occupational therapists will also help your child find the right special equipment to make everyday jobs a little easier.
How to recognize?
EARLY SIGNS:
At birth a baby with CP is often limp and floppy, or may even seem normal (so pay extra attention to your babies for all mothers out there!).
Baby may or may not breathe right away at birth, and may turn blue and floppy.
Delayed breathing is a common cause of brain damage. --> happened to Syafiah on day 3.
Slow development. Compared to other children in the village, the child is slow to hold up his head, to sit, or to move around. --> yes... not yet turn over (meniarap). But there's a positive development currently. She's able to turn her body from left to right, from right to left or 180° turn either if stomach up or down.
He may not use his hands. Or he only uses one hand and does not begin to use both. --> she loves to use right hand to scratch her head, stomach even back of her body. She also loves to suck her thumb.
Feeding problems. The baby may have difficulties with sucking, swallowing and chewing. She may choke or gag often. Even as the child gets bigger, these and other feeding problems may continue. -->sucking ok, swallowing ok, chewing don't know yet but she can eat baby biscuits.
Difficulties in taking care of the baby or young child. Her body may stiffen when she is carried, dressed, or washed, or during play. Later she may not learn to feed or dress herself, to wash, use the toilet, or to play with others. This may be due to sudden stiffening of the body, or to being so floppy she 'falls all over the place'.
The baby may be so limp that her head seems as if it will fall off. Or she may suddenly stiffen like a board, so that no one feels able to carry or hug her. --> never stiffen any part of her bodies.
The baby may cry a lot and seem very fussy or 'irritable'. Or she may be very quiet (passive) and almost never cry or smile. --> quiet when she sleeps, active when she awakes, almost never cry - yes!
Communication difficulties. The baby may not respond or react as other babies do. This may partly be due to floppiness, stiffness, or lack of arm gestures, or control of face muscles. Also, the child may be slow in beginning to speak. Later some children develop unclear speech or other speaking difficulties.
Although parents find it hard to know exactly what the child wants, they gradually find ways of understanding many of his needs. At first the child cries a lot to show what he wants. Later he may point with his arm, foot or eyes.
Intelligence. Some children may seem dull because they are so limp and slow moving. Others move so much and awkwardly they may appear stupid. Their faces twist, or they may drool because of weak face muscles or difficulty swallowing. This can make an intelligent child appear mentally slow.
About half of the children with CP are mentally retarded (please show your support to ban the misuse of this word by joining the campaign on top of this blog), but this should not be decided too soon. The child needs to be given help and training to show what she is really like. Parents can often tell that she understands more than she can show.
With help and training, some children who have been considered retarded prove to be quite intelligent. --> maybe you should look at the man in the video below. He's hydrocephalic! Does he look different to you?:
Hearing and sight are sometimes affected. If this problem is not recognized, the family may think that the child lacks intelligence. Observe the child carefully and test him to find out how well he can hear and see. --> perhaps her sight are affected but we've to wait for the cyclo ra. Only will be done in March/May.
Fits (epilepsy, seizures, convulsions) occur in some children with CP.
Restless behavior. Sudden changes of mood from laughing to crying, fears, fits of anger, and other difficult behavior may be present. This may partly be due to the child's frustration of not being able to do what he wants with his body. If there is too much noise and activity the child can become frightened or upset. The brain damage may also affect behavior. These children need a lot of help and patience to overcome their fears and other unusual behavior.
Sense of touch, pain, heat, cold, and body position are not lost. However, the children may have trouble controlling movements of their bodies and trouble with balance. Because of their damaged brains they may have difficulty learning these things. Patient teaching with lots of repetition can help.
Abnormal reflexes. Babies have certain 'early reflexes' or automatic body movements that normally go away in the first weeks or months of life. In children with brain damage, they may last much longer. However, these are only important if they affect how the child moves. 'Knee jerk' and other tendon-jump reflexes are usually over-active (jump higher than normal). If you are not sure, testing for abnormal reflexes may help you tell CP from polio.
There are 3 main types of CP:
Spastic CP (stiff and difficult movement)
Athetoid CP (involuntary and uncontrolled movement)
Ataxic CP (disturbed sense of balance and depth perception)
Note : There may be a combination of these types for any one person called Mixed CP.
Caused by:
Causes before birth:
Infections of the mother while she is pregnant. These include German measles and shingles (herpes zoster).
Differences between the blood of mother and child (Rh incompatibility).
Problems of the mother, such as diabetes or toxemia of pregnancy.
Inherited. This is rare, but there is a 'familial spastic paraplegia'.
No cause can be found in about 30% of the children.
Causes around the time of birth:
Lack of oxygen (air) at birth. The baby does not breathe soon enough and becomes blue and limp. In some areas, misuse of hormones (oxytocics) to speed up birth narrows the blood vessels in the womb so much that the baby does not get enough oxygen. The baby is born blue and limp-with brain damage.
Birth injuries from difficult births. These are mostly large babies of mothers who are small or very young. The baby's head may be pushed out of shape, blood vessels torn, and the brain damaged.
Prematurity. Babies born before 9 months and who weigh under 2 kilos (5 pounds) are much more likely to have cerebral palsy. In rich countries, over half the cases of cerebral palsy happen in babies that are born early.
Causes after birth:
Very high fever due to infection or dehydration (water loss from diarrhea). It is more common in bottle-fed babies.
Brain infections (meningitis, encephalitis). There are many causes, including malaria and tuberculosis.
Head injuries.
Lack of oxygen from drowning, gas poisoning, or other causes.
Poisoning from lead glazes on pottery, pesticides sprayed on crops, and other poisons.
Bleeding or blood clots in the brain, often from unknown cause.
Brain tumors. These cause progressive brain damage in which the signs are similar to cerebral palsy but steadily get worse.
For a mother who has a CP child, there's a light for you. It is stated that CP is not contagious. Meaning, it won't be passed from one child to another. Even if he gets married..
I shall translate this entry in Malay if I've time... At the mean time, please take care of your babies. Prevent any undue matters as CP can be happening after birth too. Till then...
p.s. : I noticed that if you're browsing this page by using the Mozilla Firefox version 3.1 beta 1, the li code will missing. The li code is actually for bullet. So, the bullet won't appear in your page. There's no problem with browsing through Opera too.
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30 comments:
salam k su,
very informative entry.
Moga syafiah makin baik..
salam,
melayari cerita syafiah membuatkan hati dan jiwa saya lebih kuat dan bersemangat mengharungi hari-hari mendatang. betapa kita ini manusia yang begitu lemah dan tiada daya. tetapi kita masih punya Dia untuk bergantung harapan.
didoakan agar segalanya dipermudahkan.
Mirah:
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Fajar:
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