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My daughter suffering from cerebral palsy, how can we make her independent?

Q: What is the permanent solution for cerebral palsy (CP)? My 14-year-old daughter is not able to balance herself and walk on her own. She was prematurely born in the beginning of the 9th month. She was in ICU for 2-3 weeks with jaundice. When she was 7 months old we realised that she was not sitting properly and kept falling. It was then that we were told that she is a patient of CP. We gave her botox and she has undergone a surgery for the extension of her muscles to keep the knee straight. At present she can walk with a crutch in one hand and the other held by another person. We are avoiding second crutch and wheel chair lest she gets used to it. Her mother gives her regular physiotherapy to keep her body muscles flexed and soft. She is now studying in class 4. She is a bright child in studies. How can we keep the spasm away from her? How can we make her independent? How do we help her to look after herself? Will more botox help or should we give her other medication?

A:I am quite sure you have received enough advice from all concerned experts. Please accept that your daughter has cerebral palsy (CP) and there is no permanent solution to the problem. Cerebral palsy is a heterogeneous group of persistent disorder of movement and posture caused by non-progressive defects or lesions of immature brain. Evaluation of a child with CP requires a multidisciplinary approach with a team of professionals comprising of a paediatrician, or paediatric neurologist, occupational therapist, physiotherapist, child psychologist, and social worker. Such facilities are available in a few centres in Delhi such as the Spastic Society of North India and Kalawati Saran Children's Hospital to name a few. An extensive musculoskeletal system examination by experts is necessary to determine the degree of disabilities and the need for further therapy including further medications and surgery. Medical treatment for spasticity is generally given when spasticity is severe so that proper physiotherapy cannot be given. Botulinum toxin (Botox) injections are one of these methods, even though very painful. Other drugs also have been used to decrease spasticity with limited success. It is important to strike a proper balance when using these drugs so that the child does not lose her functional capacity due to excessive relaxation. The need for surgery has to be reassessed by the treating team. Surgery is useful in some children with spasticity of lower limbs.


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