pre mature

Amanda’s Diet

There are many nutrition issues associated with SMA Type 1 kids.  They can’t go without food for more that 4 hours because they have decreased lean body mass that becomes even more affected after long periods of fasting (this means we have to feed her overnight).  They do not tolerate large amounts of food at the same time, so they need to be fed slowly or even continuously throughout the day and night.  Another reason for feeding them continuously or slowly is that in case of an emergency (vomit, mucus plug, sickness, etc) cough assist can be done without so much risk of causing them to vomit even more which can be problematic in SMA kids as it could go to their lungs.

Another issue in SMA Type 1′s is constipation; their metabolic system is slower and they get easily constipated which can increase reflux and breathing difficulties.  Because of all these issues (and more that I’m sure I am missing) they can’t have a regular diet.  There isn’t a proven diet that works for SMA children but a lot of people suggest that an amino acid diet works best.  Here’s a link explaining the amino acid diet http://www.smasupport.com/diet.htm

At 14 months Amanda started Vivovex, a 100% free amino acid formula that SMA families from the USA kindly send to us.  In a 24 hour period she is fed 16 ounces of Vivonex and 16 ounces of breast milk that we also get donated.  So far she is doing very well in this diet.  Within weeks of starting it we have noticed she has more movement in her arms and legs (this could also be due to being older and more aware of her muscles, but we believe the diet has played an important role as well).

 

 

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