(Gastroesophageal Reflux Disease):

Rebecca-I bet any neurologist or rehab doctor who know about SMA would agree to an upper GI and swallow study just to see where she is. Many have swallowing and reflux troubles as they age. I see it like a lung test you do every couple
years but a GI could be done like every five. Reflux if bad can cause phenomena and cause bleeding and cancer. The spinal curve with SMA does make reflux more common. I see all this as reason to just check her out. Or say she drools more laying (when reflux can be worse). Even if the test shows nothing at least you can see if she develops it as a teen or adult.

I had heartburn a few times as a small child. I woke up crying and drank milk to soothe the burn. But you can have reflux with no or little burn. My reflux just got worse the last four years it was very painful but now I'm on Prevacid and feel fine.

Joylite-Aloe works great for reflux, heartburn...all that kind of thing! You can get it in liquid form at health food
stores and you can drink it just like water. It doesn't even have a weird taste or anything!! But make sure you get the liquid and not the kind that is more like a gel- not easy to swallow - yuck hehe or you can get it in gel-caps too! :) And of course it is natural and good for your stomach too!

Renee- My hubbie just told me that the natural coating in your stomach is snot (excuse the wording), and since our kids cannot swallow; they're not getting that to line their stomachs.  That is what Zantac does; it lines the stomach.  Interesting.

Corby- We contain Kaelan's mild reflux with Reglan and zantac, and he does great with them. I heard that if they do not have reflux before the g-tube, it's only a 5% chance that they will develop it afterwards. And that would mean you could do the surgery under mild sedation and the all important NO INTUBATION!! In addition, one other thing is with the NG tube Kaelanís secretions were really bad and we moved the surgery up because they were just to hard to manage.

Jenn- sometimes when I am eating and have an excess of mucus or secretions in my throat, I experience the "pre-vomit" gagging thing.  Sometimes, even when I am not eating.  I usually find that drinking something bubbly like sparkling water kind of "burns off" some of the mucus.  Caffeinated beverages like Coke help even more. Even just plain water seems to smooth everything out to some extent. In addition, I find that soy milk helps coat an upset stomach almost as much as cow milk, without the lactose side effects.


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