Thursday, February 9, 2012

Feeding Tube Awareness - who needs it?

This week is "Feeding Tube Awareness" week. Honestly I have mixed feelings about "awareness." I don't have any personal goal to bring awareness to feeding tubes or to Kabuki syndrome. This sort of awareness provides only casual knowledge for those previously ignorant and I don't see that it does much good for anyone. I am far more interested in bringing awareness to healing protocols such as GAPS.

I will go out on a limb here and say that if there was more awareness of healing foods then there would be fewer kids with feeding tubes. I know this firsthand as I emphatically believe that Juliana could have avoided a g-tube had I known then what I know now. I do believe than an NG tube would have been necessary for a short time (maybe 6 weeks). But my girl could eat and she was catching on quickly when everything went downhill.

Case in point: one of my favorite GAPS bloggers recently wrote about her preemie son who had previously had a feeding tube. Even with a feeding tube he struggled to grow and he did not have any appetite (nearly universally common for tube-fed kids). Read about the changes since starting GAPS.

Juliana is going to have a similar success story. When I told her GI that I wanted to take her off of reflux medication, he gave me quite a long spiel about why I shouldn't do that. I took his advice... for another week or so. And then I followed my gut and removed the medication cold-turkey. (I now believe that nobody should take a reflux medication and that anyone and everyone can be free of acid reflux). Guess what? Juliana is the GI's only tube-fed patient who is not on a reflux medication. When he saw how she was jumping percentiles in the charts, he was surprised and asked me how I was doing that. At our last appointment he called her "juicy" and said that she was in a good position to tube wean. Although many Kabuki babies struggle with weight gain, Juliana has had little difficulty in this area. Are all of these things coincidences? No.

This is the awareness that is needed. It is needed to both the feeding tube community and to the public at large.

I will close with the wise words of my friend Nichole. She is always an inspiration. Read her story.
GAPS heals autoimmune disease. Period.  It is not a band aid. It is not a fluke. It is not a trendy diet or a prescription for a select few. It is scientifically backed, time tested, and designed for even the most difficult autoimmune diseases. And in the face of fear, it provides hope.

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