Type II (and some Type III)

It is important to get your child upright at the earliest possible age. Standing is important in development. It allows for better respiratory function, improved bowel function, and encourages greater mobility. Getting your child in an upright position may sometimes require advocacy on the part of the parents to encourage the physician to write a prescription for standing aids.

There are several options to consider when choosing the appropriate standing aid. One option is a standing frame and/or parapodium. For added mobility and independence a standing wheelchair is ideal. A child as young as 13 months can use this. Bracing is also an option. Reciprocating GaitOrthosis (RGO's) and weight bearing knee ankle foot orthoses (KAFO's) have been found to work for children with Type II, and these children have been able to take some steps. Use of the appropriate type of assistive device or walker with braces is important and various options should be explored with your therapist.

The use of a light-weight manual wheelchair can be an exciting addition for the SMA child. It can provide mobility, independence and a taste of adventure, while still allowing them to use some of their own strength. However, it should be understood that for true independence and mobility, a power wheelchair is necessary.

Scoliosis (curvature of the spine) occurs at some point in essentially all children with SMA Type I and II and some Type III. The degree of the scoliosis will be a factor in deciding how to treat it. Because scoliosis can restrict breathing and pulmonary function, necessary precautions should be taken early. Options for managing scoliosis are: custom seating systems, seating aids and a body jacket. Later, spinal fusion surgery may need to be considered.

If your child has frequent colds and difficulty coughing you may want to inquire about a cough assist machine. The CoughAssist™ is discussed in more detail in the Type I section.

Diet, as with any growing child, is very important. Your child's diet deserves careful consideration. Excessive weight can make mobility more difficult. Constant contact with your physician and a nutritionist is very important in this aspect of care.

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