Keep a medical journal with copies of all doctor reports etc. One suggestion that is helpful for all parents of special needs children is for them to assemble a loose-leaf notebook on their child. You can put dividers in it for subjects such as Doctors, Therapies, Exercises, Contacts, the local children's agencies in your state etc. This notebook will come in handy when you make a visit to the paediatrician who may never have heard of NM and to the various specialists, agencies and multitudes of therapists who want a synopsis of your child's health history etc. The respiratory muscles are often especially weak, which leads to restricted respiratory capacity.
Cardiac contractility is normal, and involvement of the cardiac muscle is very rare.
There is also no evidence of smooth muscle involvement. No abnormalities of the central nervous system have been documented. The prognosis is largely dependent on the on the maintenance of muscle power and respiratory capacity, and the prevention of scoliosis and other detrimental contractures. Both an autosomal dominant and an autosomal recessive form of nemaline myopathy exist, and the two may be indistinguishable on clinical grounds in the individual patient. Thus, consultation with a specialist in Medical Genetics is recommended.