SMA Syndrome??

So, I talked to Ben's GI doctor and he suggested to go even slower and continuous with Ben's feeds (same thing some of the CHARGE parent's suggested - thank you). We are now feeding him 50 mls (1 1/2 oz) an hour 24 hours a day.

Ben could have a very rare thing called SMA Syndrome. It is also referred to as "cast syndrome" and affects even typical people in a body cast. What happens, is a part of the digestive system gets pinched from being cast a certain way and from the lack of mobility. Laying on your back worsens the problem (Ben's only way to lay). People have to be admitted for this because of dehydration and eventually anorexia because they don't want to eat since it makes them so sick. They are then given a feeding tube with continuous feeds until the cast comes off. Because Ben already has a feeding tube, we have an advantage and can do this at home (finally, a perk to a feeding tube). There is no cure for SMA other than slow, continuous feeds and keeping the person hydrated. Once the cast comes off, the problem goes away. Let's hope we figured it out!

Hopefully this helps.