Parent's Opinion About OSSCS and Physiotherapy Treatment

I am father of Ankit from Varanasi. My son is suffering with cerebral palsy since birth. Previously he was not able to walk properly. We had gone through so many treatments from various places and also consulted so many doctors and therapists. Somehow, he started walking with the help of walker. But I was not satisfied with his walking pattern because he was walking with bending his both knees and his both hand also had some problem.

He was having great urge to go school but we were not able to send school due to his physical problem. One day someone ask me to consult Dr. J.K. Jain an orthopedic surgeon in Allahabad. I had consulted him and he suggested me that Ankit needs SEMLS by OSSCS concept, which will help him to relieve his disability and will able to walk nicely. My son had gone through this surgery on 23rd January 2012. After few days physiotherapy has also started.

We stay at Allahabad for 6 month for therapy after surgery. After 3 months of surgery, my son has shown excellent response in walking pattern his hand function also became better. He started walking with two sticks. During this treatment period, we got a nice accommodation at CP Home in Allahabad. Each and every person here is very much familiar. I am very much grateful to Dr. Jain and his team. I am highly satisfied with the whole team of Samvedna.

I am from Raipur, Chattisgarh. I am farmer by profession. My daughter Jyotsna had problem in walking, sitting, standing etc. She was not able to do her own work. I had shown her to so many doctors at different places but there were no positive outcome. I was hopeless. She was making every effort for walking but due to deformity in all four limbs, she was not able to walk.

Then one day I read about camp of Samvedna at Raipur in a newspaper and met Dr. J. K. Jain at a camp in Raipur. Then he said that through an OSSCS surgery and physiotherapy, my daughter’s disability will be restored. I was having lots of financial problem. Dr J K Jain has given assurance for financial support for our daughter surgery. Jain Samvedna trust from Raipur as well as Samvedna , Allahabad is given us assurance for support. Then with lot of hope I took my daughter to Allahabad. Dr. J.K. Jain performed surgery on her. She was undergone surgery in all four limbs by SEMLS. After few days’ of surgery, physiotherapy was started. She started showing positive response within month of surgery.

She was able to put proper pressure upon her entire feet. Now she is able to walk with the help of the sticks. Her hand function became much better. I hope that she will be able to walk without any support and for that we also have to support her a lot.

We got a very good accommodation at Cerebral Palsy Home in Allahabad. I cannot explain response and support given by whole team of Dr J K Jain without much expenditure. Here everybody is very helpful by nature. I am very much grateful to Dr. Jain. The physiotherapy team has also done a really hard work. I am highly satisfied with the whole team of Samvedna and thankful to all of them who have taught my daughter to stand her on her own feet.

Pre and Post Surgical Protocol in Cerebral Palsy Children

There is no special investigation required for SEMLS by OSSCS concept. Simple blood test and x-ray required in some cases. Total duration of surgery is depending upon many factor but 3-4 hour in diplegic and 5-6 hours in quadriplegic. OSSCS Surgery in lower limb is being performed in epidural anesthesia and upper limb in brachial block.

We try that child is not completely unconscious but in small child medicines only given to take them in sleep. Till now no adverse effect is seen. After taken out from Operation Theater water should be given after two hours and food can be given in evening. After surgery no special precaution is to be taken. Child can turnover and sit on bed also. In this surgery all stiffness and Spasticity can be control by only one procedure and muscle balancing power becomes good.

Normally, physiotherapy started after two weeks of surgery. In starting, exercises done only to decrease pain, increase the range of joints and decrease the stiffness of muscles. Then after 1 month of surgery, strength training exercises and exercises for activities of daily living will start. These strengthening and daily living exercises run for almost six months to one year. After this protocol, exercises will be continued till the adolescent phase and child became independent as much as possible. Child should be under close observation. By close observation, child can be secured by the adverse effect of any further problem.

Child feels easy in walking and balancing. Result of surgery depends on many things like therapy, child’s ability to understand and the main parent’s hard work.  In last five years it is never seen that there is no effect of surgery, ever child who has undergone surgery has shown response depending upon their pre operative functional disability.

Operation in these child done after complete investigation and child is operated only who has need and capability too. In this only physical specially deformities and Plasticity is to be corrected and function recovery depends upon therapy and the child’s ability.

Diagnosis of Cerebral Palsy - Understanding Cerebral Palsy

Initial signs for parents to notice, that their infant is not developing normally. Infants with cerebral palsy perform movements slowly, take longer time to roll over, sit, crawl, or walk. When an infant develops comparatively slowly then it is called developmental delay.

Some of the skills that normal infants should have: Holding own head up when lying flat in a bed at 3 months, Sitting and rolling over by 6 months, Walking by 12-18 months, Speaking simple sentences by 24 months.

Earlier most children with cerebral palsy were diagnosed by the time they are two years old. But if a child’s Symptoms was mild; it would be hard for a doctor to make a true diagnosis before the child is four or five years old. With better understanding of patho-mechanism and presentation, now we can make suspicion as high risk baby at the time of birth and definite diagnosis at the age of three month so we can give much better response in these children by early intervention. 

Doctors diagnose cerebral palsy by obtaining a complete medical history of development and examining the child, paying special attention to the child’s movement pattern and associated medical problem like epilepsy, vision, hearing, speech problem& recurrent chest infection. In addition to checking for the most common symptoms

such as slow development, abnormal muscle tone, and unusual posture -- a doctor also has to make sure the child doesn’t have something else that could cause similar symptoms.

Some children have hypotonia, which means that their muscles are too relaxed. In this case, the Childs muscle may appear very flexible. Sometimes a child can have hypotonia that later become hypertonia two to 24 months after birth. Other children have hypertonia which makes their muscles seems stiff. Child can also have fluctuating pattern of tone known as dyskinetic pattern of movement disorder. Children may also have unusual posture or favouring one side of their body.

What’s most important to the doctor is making sure that the child's condition is not getting worse. Although cerebral palsy symptoms may change over time, children with cerebral palsy do not usually lose function at rapid pace. That means, if a child does seem to be losing motor skills, the problem is probably not cerebral palsy. It more likely a genetic or muscle disease, a metabolism disorder, or tumours in the nervous system. A complete medical history, special medical tests, and, in some cases, repeated check-ups can help confirm whether or not the child has cerebral palsy for certain. Usually the diagnosis of cerebral palsy has been made based on the basis of detail medical history and physical examination. Lab investigation is not required in most of the cases. But in few cases with doubtful cases and suspected brain lesion few investigation may required.

With recent advancements in technology and its reach, some time Doctors conduct brain scans (like MRI scans), that allow doctors to look into the brain, can find problems that may be able to be treated.  If it is cerebral palsy, an MRI scan can also show a doctor the location and type of injury to the brain. This test uses a computer, a magnetic field, and radio waves to create a picture of the brain's tissues and structures. Doctors prefer MRI imaging because it offers better detail and does not involve radiation. Other methods may include Cranial ultrasound. 

This test is used for high-risk premature infants because it is the least intrusive of the imaging techniques. However, it is not as effective as the two methods described below at seeing small changes in “white matter” – which is the type of brain tissue that is affected in cerebral palsy.

Computed tomography (CT) scan. This technique creates images that show brain injury. On rare occasions, metabolic disorders can be mistaken as cerebral palsy and some children will require additional tests to rule them out.

• Xray- xray of pelvis and spine are required to see hip and spinal problem

• Blood investigation are required to see metabolic causes and other associated medical problem.

• Genetic analysis is being advised in certain cases to see some genetic cause of neurological deficit.

To confirm a diagnosis of cerebral palsy, a doctor may send a child to other doctors who have specialized knowledge and training or to specialty clinics where these doctors work with a team of health professionals who specialize in working with children with cerebral palsy and other developmental delays. These doctors  Might be child neurologists, developmental paediatricians, ophthalmologists (eye doctors), or otologists (ENT doctors). Additional observations by these specialists can help the doctors make a more accurate diagnosis and begin to develop a specific plan for treatment.

Feeding Children with Spastic Cerebral Palsy

In cerebral palsy there are 3 biggest problems that the spastic children are – the body is in a poor position, the jaws are tight, the tongue pushes the food forward. Swallowing is difficult because of some reasons like head pushing back, jaw and lips are not closed, the bottom lips tend to bitten in by the top set of teeth or mouth is wide open, tip of tongue is down behind the teeth, the tongue cannot roll the food back to mouth or there can be chewing problem.

There are also some problems with breast feeding or feeding by bottle. The child would push back his head and body and their legs and arms would get stiff. They cannot suck and swallow easily. So it is very important that the head and body should be in correct position, all the muscles of neck and jaw must be relaxed, jaw must be back and not clenched, the lips must be together and the tongue must be able to move the food from side to side in the mouth.

To breast feed or by a bottle a child with cerebral palsy the head must be in forward direction so that he can swallow more easily. The baby must be in half sitting position with hips bent and the mother must keep the shoulders of baby in forward direction by pushing firmly on the chest. In feeding by bottle the teat of bottle should be bigger in size so that it would not choke.

The therapist should concentrate to control jaw movement in the child. If the therapist teaches a child how to control his mouth, particularly his jaw, then sucking and swallowing, spoon feeding from plate and drinking from a cup can be improved. To teach a child the therapist should sit in a chair facing the child’s face. The therapist can put the child on his lap or on standing frame (it simultaneously relax the muscles of whole body during feeding).

The position of child should be decided according to child’s age and ability. The therapist should stabilize the head then clasp the jaw and the index finger should be kept on the jaw of the child. The therapist should push the jaw backward (not downward) and push the bottom lip up, as this is necessary for swallowing. The third finger is put under tongue, to help the tongue move. The other fingers are lifted away from the child’s face. To reduce the Plasticity the therapist should use his right index finger and introducing inside the child’s mouth he should move the finger in semicircle on the top gum from middle to left then to right side. This is done firmly and not too fast. It is done 3 times and the child is encouraged to swallow by the 3rd finger of the left hand moving from forward to backward.

The therapist must also concentrate on hand activities (prehension and precision) to teach the child to hold plates and spoons to feed themselves. While teaching therapist must work on dominant as well as non-dominant hand. The non-dominant hand should be stabilized during activities of dominant hand and vice versa.

The swallowing activities also depend on quality of food. It must be started from liquid then semisolid and finally solid. Only metal teaspoon must be used to feed a child. Small amount of food must be put on the teaspoon. The spoon must be put right in the mouth and pressed down to the tongue. By doing this the tongue will be encouraged to stop pushing the food forward and the child will be able to use his lips better. To teach drinking water or milk the therapist must correct the shape of the plastic cup.

Cut a semicircle at the mouth of one side of plastic cup so that the child will not push his head back to get the liquid. Keep the cut part upward and put the cup on top of bottom lip and then tilt the cup slowly upward. The therapist must demonstrate all activities to child’s mother so that she will learn how to feed his child.

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Group Therapy and Socialization in Cerebral Palsy Children

Group Therapy and socialization is essential in the cerebral palsy children. Group Therapy is meant by therapy done in group of same population. In this technique same cerebral palsy children were collected and given same kind of therapy. Socialization is a technique in which cerebral palsy children were exposed to entire world to get prepared for the world’s challenges.

Group Therapy increases the concentration and the competition between the children. This concentration and competition felling gives a sprit to do work. Like other children cerebral palsy children also like complements, competition. In group therapy we mostly give same task to all children and ask them to complete in ease and in less time.

For example if we ask children to pick same color ball by their right hand and to put it in a bowl kept on the opposite side. Ask this to do faster and with ease this challenge and competition produce a spit to complete the task. By Group Therapy any activity can be approached. There are many fine motor movements like griping any object by full hand, four finger and thumb, two fingers and thumb or three fingers and thumb.

Organize children according to their disability as mild moderate and severe. We have to also divide them into hypertonic and hypotonic group. Now decide the therapy which is given in which group. For example as hypertonic group we have to teach them the relaxation, so for this we lie down all of them in plinth and ask them to relax their muscles by producing a competitive environment. This can help children to get the things the things more easily. As in hypotonic children we stimulate them ask for the movement in a competitive way.

Group therapy is very effective because the environment in same group is more according to them then the real world. In the real world they feel themselves weak and differently baled  First prepare them in their own group then we can put them in social world.

Social world means the world in which we live. As human being is a social body not possible to live alone without society. Socialization is technique by which we make these children expose to the society. As because of their disabilities they were kept inside the home by their parents. This can be because of many reasons as such they pamper them a lot, they think that child may get depressed or parents thing them a curse and feel guilt of them. All this prepare a self centered world in mind of these children. They feel them alone and away from society.

Socialization is must in these children. In this technique parents having the greatest role so counseling of parents is must. Teach parents how these children can be socialized. There are main two steps of socialization, first is home and second is school.

Tell them when child is too little parents usually keep the child with them all time only. Usually mothers not allow anybody to touch their child, teach them that to recognize all the family members is important. Allow the child to roam here and there. Let the other normal child to play with them. Talk with them frequently about every subject as talk to normal child, this increase the interest and knowledge of the child.

If child can move let them out with or without parents. Introduce them with strangers. In school going age if child is able to speak, understand so admit them in a normal school. Here in normal school society makes them aware and prepare for the barriers and difficulty might come in their life ahead.

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Classifications of Cerebral Palsy

Cerebral Palsy is an umbrella term that covers a spectrum of different problems including motor control disturbance, epilepsy, vision, speech, hearing and recurrent chest infection. Once the diagnosis has been made on the basis of medical history and physical examination, child physical disability is classified for ease of communication among health professionals as well as for suggesting proper prognosis and treatment. The classification system is based on the physiology of the motor dysfunction, the number of limbs involved and the functional status of the child.

Physiological Grouping - Depending upon type of muscular control loss.

Spastic Cerebral palsy plasticity is defined as a velocity-dependent increased muscle tone, determined by passively flexing and extending muscle groups across a joint. It is the commonest type of cerebral palsy and has much better prognosis than other varieties.

Dyskinesia - Dyskinesia is defined as abnormal motor movements that become obvious when the patient initiates a movement. When the patient is totally relaxed, usually in the supine position, a full range of motion and decreased muscle tone may be found.

 Dyskinetic patients are divided into two subgroups.

The hyperkinetic or choreo-athetoid children show purposeless, often massive involuntary movements with motor overflow, that is, the initiation of a movement of one extremity leads to movement of other muscle groups. b, The dystonic group manifest abnormal shifts of general muscle tone induced by movement. Typically, these children assume and retain abnormal and distorted postures in a stereotyped pattern.

Both types of dyskinesia may occur in the same patient. Simply stated, spasticity you feel; dystonia you see. Ataxias -Patients with ataxia have a disturbance of the coordination of voluntary movements due to muscle dys-synergia. These patients may be hypotonic during the first two or three years of life. They commonly walk with a wide-based gait and have a mild intentional tremor (dysmetria). Mixed Group-- Patients in this category commonly have mild Spasticity, dystonia, and / or athetoid movements. Ataxia may also be a component of the motor dysfunction in patients placed in this group.

Hypotonic – Decrease tone in whole body. This type of cerebral palsy usually converts in athetoid or mixed cerebral palsy as time passes.

Anatomical Grouping depending upon no. and extend of limbs affected

Diplegia-  Diplegia refers to involvement predominantly of the legs. Quadriplegic refers to dysfunction of all four extremities; in some children one upper extremity might be less involved; the term triplegia then would be substituted.

Hemiplegia - Hemiplegia refers to individuals with unilateral motor dysfunction; and in most children the upper extremity is more severely involved than the lower. Finally, an unusual situation may occur, where the upper extremities are much more involved than the lowers; the term Double Hemiplegia is applied to this group of patients.

Functional Classifications of Cerebral palsy Depending upon the degree of functional independence.

• Clumsy Child. Uses no resistive devices (such as crutches), Can walk indoors and outdoors and climb stairs , Can perform usual activities such as running and jumping, Only has decreased speed, balance and coordination.

• Walks Independently. Limited in outdoor activities, Has the ability to walk indoors and outdoors and climb stairs with support of railing, has difficulty with uneven surfaces, inclines or in crowds, has minimal ability to run or jump.

• Uses Assistive Mobility Devices Walks with assistive mobility devices indoors and outdoors on level surfaces May be able to climb stairs using a railing, may propel a manual wheelchair (with assistance needed for long distances or uneven surfaces).

• Severely Limited, Self-mobility severely limited even with assistive devices, uses wheelchairs most of the time and may propel their own power wheelchair.

• No Self-Mobility.  They have physical impairments that restrict voluntary control of movement.

The ability to maintain head and neck position against gravity is impaired in all areas of motor function, children cannot sit or stand on their own even with equipment, cannot do independent mobility; though may be able to use a powered Wheel chair.

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What are The Botulinum Toxin in Cerebral Palsy

Clinical use of botulinum was recognized by Bergen et al. in 1949 by identifying the effect of botulinum toxin on neuromuscular transmission. Once it was thought to be potent biological toxin to human body, now its potential is being utilized as therapeutic agent for different clinical problems specially spasticity & cosmetic purpose. In all variety of botulinum toxin, type A is used for the clinical application. This is being utilized in Mx of cerebral palsy since 20 years.

This toxin is used as intramuscular injection at most condensed site of neuromuscular junction of affected muscle. This toxin block acetylcholine release from neuromuscular junction & causes local temporary chemo-denervation and effect last for 4-6 month. Even after disappearance of drugs, some modulation of nerve transmission has been seen, so effect persist beyond the time limit and dystonic posture also get corrected due to slight diffusion of drugs in systemic manner.  It is being commonly used for spastic & dystonic cerebral palsy Treatment.

Cerebral Palsy Treatment

Dose & safety margin depends upon brand of botulinum toxin, number of muscle and wt of child. Total maximum dose is about 10-12 unit per Kg of body Wt. it is being used in all affected spastic muscles and usually at multiple site (3-4 in each muscle). 

Effect of botulinum toxin can be prolonged with post injection plaster, proper patient & muscle selection, injection under anesthesia and post injection braces and good therapeutic protocol. Plaster is given for only 7-10 days then patient is advised braces and therapy.

It is very effective when child have dynamic spasticity between the age group of 2-5 years and not so useful when child develop contracture and deformity. Botox injection is advisable when Spasticity is interfering in therapy programme and muscle excursion become too less.

Usually botulinum toxin injection are used in all affected muscle in a single setting and it is better to give it under anesthesia, because it require multiple injection puncture and is painful and it also save the toxin from wastage. Most commonly botulinum toxin is used in Gastrocnemius, Hamstring, Rectus Femoris, Adductor, Pronator Teres, and Flexor Digitorum.

Injection can be repeated every three monthly but if proper postoperative therapeutic protocol has been taken into consideration it may not be so frequent. At Samvedna, we rarely require repetition of toxin due to good therapeutic protocol and use of braces. It reduces pain, facilitate therapy, better cooperation of child, better functional and motor gain.

By the use of toxin, OSSCS Surgery also can be delayed till the maturity of gait. Antibodies to toxin have been one of the possible problems with repeated injection that can interfere in next injection of toxin.  Otherwise it is well tolerated. Side effects are very -2 rare.