Monday, January 14, 2013

Congenital Sucrase Isomaltase Deficiency.

These are 4 words I never thought would have to be in my vocabulary.This weekend, after our '48 hour' wait for test results had turned into 5 days, we got some kind of an answer as to what is going on with Avery. Unfortunately, it isn't the complete answer, but it is a huge step in the right direction, in figuring our girl out.

So what do those big words mean? Basically, it means that my sweet girl will have to be on a special diet for the rest of her life. Her tiny body is not able to digest or handle Sucrase or Maltase, which are both very common sugars. It is in bread, seasonings, grains, fruit, table sugars, none of those things will be allowed in Avery's diet. She will be on a very strict, special diet just for her body. I know what you are thinking...what CAN she eat? Well, not much, to be honest, and we will figure all of it out as we come to it.

So the plan for now is to get a G-tube inserted, to see if her new special diet will stop her stomach from swelling up. As of right now, she is unable to digest even 5mls of milk through her NG tube (the tube in her nose) so the G-tube (the tube that will be surgically placed in her stomach) is the next step. If she can not tolerate that, she will get a permanent central line placed in her chest, and she will remain on IV fluids and TPN, to get the nutrients and calories that she needs to grow and thrive. If all goes according to plan (which lets face it, it never does) she could be home in about 3-4 weeks! It will be such a joy to have all of my babies under one roof.
Her doctor is very intrigued by her. He said she is such complex, rare case, and he had never seen anyone like her before. We always knew she was special.

1 comment:

  1. Not sure if you have ver heard of it, or if it would work for her but the SCD diet has helped people with really severe gut issues and it's healthy and doable (we lived on it for 2 years)
    Tara (Marliah on diaperswappers)