Concerns of Parents

We understand how you feel and what all concerns you have about various symptoms of your CP child. Can you relate to any of these?

Q: My child does not have bowel and bladder control.  I have to be always around him to make sure he stays clean.  Many a times he is not able to pass urine or stools smoothly and it is a strenuous procedure for him.

Q: My child has involuntary limb movements.  He kicks and blows his fist at anyone without any warning and as a result normal children fear to come near him. He also tends to throw his back behind constantly and his skull gets hurt in this process.

Q. My child has been prescribed steroids. I did try giving Botox to my child’s hands and feet. While it did make his muscles flaccid initially, it was back to its original condition and doctor suggested to give 2nd Botox injection. My concern is how many more Botox injections? The plaster which they apply after the Botox is another issue. It is so painful and irritating for the child.  When they remove the plaster, other muscles also seem to have got stiffer.

Q. My child falls sick very often. He has cough, cold, fever almost round-the-year. He throws out mucous either via cough or via stools, but I feel he has lot of collection of mucous in his body.  He also commonly gets cold abscesses. I do not understand how much to feed him as he cannot himself tell. I feed him according to my judgment. He has very brittle bones prone to fractures.

Q: My child gets seizures. He has been on anti-epileptic drugs, but still he gets epilepsy attacks and then after his doctor increases the dose of his medicines. Is this ever going to end?

Q: My child has a foot drop. Whenever we lift him up, his toes are pointing towards the ground. Also when we make him stand, his toes touch the ground and not the heel unlike in normal children. This makes it impossible for him to walk.

Q: I do not know how much to feed my child. Is the food that I am feeding him causing any harm rather than doing good to his body. He never asks for food by making any gestures, it is me who constantly keeps him feeding.

Q. The skin of my child does not have natural pinkish color unlike other children. His skin is somewhat pale, yellowish, and at some parts even blackish. My child has a stiff chest. I don’t see his rib movements while breathing as it appears in normal human beings. My child has a tilted waist; both hip joints are not at the same level. Both knees of my child are not at a same level. His knees are bent solid. We can’t straighten them at any cost.

Q: My child has delayed milestones. 

Q: My child does not walk.  My child does not move in any manner and is just lying in a place for the whole day.  He is not doing any activity.  Doctors told me he is mentally retarded too.

Q: My child drools a lot; I have to carry a hanky or a bib all the time. It is shameful for me to go out in the society. My child also suffers from dental carries and has poor oral health.

Q: My child has squint; I don’t know whether he can actually see any objects.

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