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Saturday, October 11, 2008

Reality Check: Still between a rock and a hard place

We had to start Ellie up on the Cisipride last night. And ya know, I am sad about that. The doctors said she had to discontinue it on the 5th for the surgery on the 8th. We did and found her to be none the worse. But Thursday she was a little gaggy and up all night, not vomiting, but refluxing and in pain. Last night and Friday, more of the same. Such a bummer. I was really hoping to get her off the Cisipride.

So in truth, it's the meds AND the food combining no sugar, low acid diet AND the Slippery Elm that are keeping her esophagus safe and healthy. Which also tells me that her reflux is THAT bad that she needs all of that still. The small bubble of hope exists in the fact that we have not upped her medication dosages on the Cisipride, Protonix, or Zantac in over one year. Will she grow out of needing them some day? That' s a question that can only be answered by looking at her brain damage and believing and brain plasticity and hoping that some of the alternative therapies we do with her help heal her brain. Hoping too that stem cell research will continue and find a cure for brain damage that is with out the risk it is today.

Signing off, from Earth, feet on the ground, trying to see it how it really is.

4 comments:

Anonymous said...

Dear Kathryn,
Thank you for the update on Ellie.
I love hearing about your lives and continually wish you all the best.

Mamá Terapeuta said...

Mmm... You are into alternative therapies but not into ABR... Bummer. I'm going to ask if they can do something about refluxe and write you back.

Kathryn said...

Mama Terapeuta - we don't do ABR but we do TST - The Scotson Technique. Linda Scotson invented this technique along with the founder Leonid of ABR. They started off doing this together and then went their own ways. So ABR is rather similar or was originally to TST though Linda has refined it over time. And, when Ellie was really little (we started TST when Ellie was 18 months) it did help with her reflux. We have been slacking lately so currently TST has not been factored in.

Mamá Terapeuta said...

Well, we have different versions on that story, oj oj. Do you have to go to UK for that???