Originally Posted by thinksrinii
But, based on the diagnosis (CT,MRI and Blood tests etc), the doctors are saying that it is only to do with the muscles and brain and nervous system show no problem. Are you suggesting surely it cannot be only with muscles(when brain and nervous system are proper)
So that I can consult few more doctors.. I am really worried now..
Thanks very much James for your attention!
This syndrome in children is very complex. It is known generally as the floppy child condition. The muscles may be weak but can also be stong but are in iether case unable to complete the childs attempted movements. The early hstory is important, how active was the child in the womb, was it a prolonged and uneventful birth and how was the APGAR score.
The neurologist is usually able to tell a upper motor neurone condition from a lower, that is from the brain and after leaving the brain.
Did the child have a weak cry at birth, able to cough, swallow and suckle well and breath easily.
The child can be floppy strong or floppy weak. It is beyong my knowledge to explain the difference but your neurologist will im sure. As far as tests go CT/MRI wouldmost likely tell conditions of the brain which would be upper motor neuron. EMG nerve conduction would be used for lower motor neuron disorder, that is the muscles. Also muscle and nerve biopsy would steer you in the right direction.
Genetic testing has made it easier in recent years in the investigation of muscular conditions. Electromyography will l differentiate between true weakness and other entities which prevent good muscles from working.
The child is having physiotherapy and that is correct. The PT will keep joints mobile give the correct exercise and be able to let the rest of the medical team know of the progress.
As you can see this is like a bit of detective work. With modern medicine and early diagnosis and treatment I'm sure the children nowadays will better than ever before. If you have some knowledge of this condition the medical staff may be more open with you to discuss the diagnosis and progress.