The CDC Growth Charts for Children with Special Health Care Needs.
Diet is one of the main factors of an SMA patients daily therapies. Without good nutritional support SMA patients don’t thrive well. Diet creates a lot of problems in our doctor patient relationships also because there is so little information as to how diet affects SMA Patients. Doctors hold fast to conventional wisdom and the BMI index when calculating an SMA patients needs.
The above site will steer you health care professional, doctor, nutritionist in the right direction. I suggest carefully reading this site, copying it into hard copy and saving the link in case you need it to train your health care provider as to your childs special needs!
Here is a quote from Section 5 of the site:
“ in bone size and fat and muscle distribution make the use of the reference data for many estimators of body composition inappropriate for many children with special health care needs. For example, BMI-for-age may not identify overweight in some children who are "overfat" because of decreased muscle mass.
Since the body composition of a child with special health care needs may differ from that of the reference population, skinfold measurements, along with BMI-for-age, may provide additional critical information about a child's body composition. This information can be useful for monitoring changes in an individual's body composition and growth pattern.”
When it comes to diet health care professionals just guestimate and I say its time for them to start taking notice and performing skin fold tests etc to more accurately come to conclusions and recommendations!
I hope you have found this information useful! Brad.