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No More Kotsanis For Us (June 22, 2009 - 5:54 p.m.)

I haven't updated our situation in a while, so I want to let everyone know what's going on in our lives.

We decided a couple weeks ago to cancel the next appointment with Dr. Kotsanis in Grapevine and stop all the supplements for now. We saw some semi-serious regression when we started the second round of supplements that we got from the doctor. We actually believe we saw some progress with the first round, which comprised only about 5-6 extra pills per day. Maybe a few more than that. But the second round, which we got after the visit where he received the test results...well there were at least a dozen bottles, some with multiple doses per day.

After doing some research on what was in the supplements, we discovered that two of them contain magnesium, which is supposed to help with the bowels. The problem with that is that magnesium, according to our research, also helps the body create seratonin. Guess what Stephanie can't process properly?? *DING* You are correct!! Seratonin!! We learned this when we tried SSRIs on her. They don't work! They make her a little bit crazy!

The problem we have with Dr. Kotsanis is that he didn't seem interested at all in any genetic testing we had had done on Stephanie, and after several thousand dollars worth of other tests, did not recognize that she had this difficulty processing seratonin. All he seems interested in is fixing the gut and digestive system. Granted, that needs fixing. However, not at the expense of her brain. We have to keep researching and find a way to help the gut without giving her other behavioral issues revolving around seratonin.

Now, as far as the book mentioned in my last post, we are not pursuing that diet, at least not at the time. I would recommend the book (Breaking the Vicious Cycle) for anyone suffering from Crohn's disease or Celiac disease. There are many testimonials of how the specific carbohydrate diet has helped patients with those issues. Just know that this diet is very difficult and requires a lot of time in food preparation at home. Sadly, we feel that we just don't have the time or energy to do this. We are continuing the current trend of no dairy in her diet, but have reintroduced eggs, as we never saw any behavioral issues involving eggs. Eggs aren't dairy, but her tests showed some moderate intolerances for eggs.

We've also let the cat back in her room, because they love each other. So there.

As always, we will update more when we can. I'll probably put another one up soon about the "Stephanie's Day" event at Northpark Mall a couple of weekends ago. The name has nothing to do with our Stephanie.

TTFN, y'all!

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