Wednesday, April 20, 2011

Biopsy results are in... and i'm more confused than ever.

I just got off the phone with Addison's nurse from Columbus. They did not find any inflammation or eosinophils - which would have shown that she was suffering from allergic colitis due to a condition called MSPI, a severe reaction to milk and soy proteins. The doctor told us she saw lots of inflammation on the scope - but the biopsy did not agree. So, it sounds like what she likely saw then was only redness from the rectal irrigation we had to do the day before.

She wants her to stay on the Neocate, in order to help her growth and digestion, since it is amino-acid based and easier on her little tummy.  She also prescribed her Senna - which I disagree with completely - Google "Senna side effects" if you want to know why. It also says "Do NOT give to children." right on the instructions.

The doctor is supposed to be one of the best in the country, but it's hard to feel like she is best for Addison when she seemed so confident that it was only MSPI and she would be cured by Neocate, antibiotics, and time.... and I guess, that's not the case. She told us to continue the same course of action and call her in 2 weeks to let her know Addison's status.

She switched her from Zantac to Prilosec, and I am really hoping that will help with the vomiting. She also added another antibiotic to 'make' her poop. I have no idea if it will work or not, or if there will be any bad side effects, but what choice do we have but to try it? I'll update tomorrow on how she's doing - but so far, its been since early Monday morning without a poop. She typically makes it 3-5 days before she gets really sick. She's only thrown up once today, but her appetite is not good - she's only had 3 four-ounce bottles today.

I am going to call the pediatrician in the morning - we had talked about repeating a sweat test when Addi was 6 months, and we are getting pretty darn close so I'd like to get it scheduled. So the waiting game continues for another 10 days or so, then I'll call Columbus and let them know we need a better plan.

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