Brookie got her feeding tube July of 2011- she was 6. This was something I feared from the very beginning of our Rett Syndrome journey (right, Carrie Akins?!?) Today as I think back, I am not sure why I feared a feeding tube so much, but it terrified me. Unfortunately, her chewing got worse and worse – we were relying on mainly a liquid diet – it was around that time seizures were kicking in too – she got down to 25 pounds …we really had NO choice. (She now has a AMT Mini One balloon button)
We did formulas to start: pediasure first, then peptamen, then complete – all of them seemed to be a GI nightmare. She gained a bit of weight but reflux got worse, constipation was awful. It might have been my imagination but her seizures seemed worse too (which was probably brought on by the horrible constipation and reflux!)
Finally our Neurodevelopment doc told us he feels all formula is junk. (He DOES feel it has its place, don’t get me wrong!!) But he said, if you can…..Feed her real food! I started slow – baby foods, coconut water and oils (olive and coconut mainly). I was not aggressive enough – the balance of the amount of fat/protein was not enough. Her hair started thinning. I did more research – she needed more protein….which is how I got to where we are now. A diet full of great foods: chicken, beef, liver, apples, pears, peas, sweet potatoes, green beans, and more! We add in things like honey, almond butter, coconut oil, avocado oil, and whey protein powder to beef it up a bit and use coconut water or rice milk as our liquid base.
She uses a feeding pump – infinity is a great brand for a blenderized diet. And we got a Blendtec blender – your average blender will not get it thin enough to go through the tube – you absolutely need one with a soup setting. Lots of moms bolus their feeds – we still use her pump. She is “eating” healthier than ever before! I am THRILLED with the results, a happier, healthier (taller and heavier) Brooklyn!
I want to encourage anyone who is thinking about a blended diet to check out this GREAT post over on the Rett Girl blog: Intro To Blended Food for Rett Girls
It is a GREAT source of information and of course I am happy to answer any questions too, just leave me a comment!