Our GI is a man of his word and as promised, he called me last night. The news he said was, as expected. Her small bowel does not work as it should. It is not as bad as her colon or stomach but it doesnt work. There are contractions in her small bowel but they are dysfunctional and would never be enough to push food thru her system. He gave us 3 options. Option 1: A botox injection to the pylorus (valve between the stomach and small bowel). The Botox would relax the valve allowing food to leave the stomach. This would need to happen under sedation every 3 months IF it worked. If we saw no improvements after the first injection then we would proceed to a different option. Option 2: Domperidone. This is a medication that is not FDA approve in the US. We would have to get special approval to use the medication and there is no guarantee that our insurance would cover this. This medication comes with its own risk. It can cause the heart to stop if there are any heart conditions. It is my understanding after talking to the doctor that we would really need to research this medication because Allie does have a murmur, her dad had a heart attack very young, I had a cardiac event when I was Allies age, and her grandfather (my side) had a heart attack in his late teens/ early 20s. Option 3: This too is a costly option. This would involve us traveling to Columbus, OH to see the motility guru. There is a possibility that Allie would benefit from a gastric pacemaker. Just like in the heart, a gastric pacemaker sends electrical impulses. In Allies case, the impulses would be sent to her stomach and would cause her stomach to contract. This would theoretically allow her stomach to empty. (this option would have us doing some serious fund raising because insurance may not cover some to all of this treatment) If these options fail, then are only choice left would be transplant. Thank you all for all of your prayers and continued support. I am thankful for answered prayers, God has given us options. I am thankful for unanswered prayers, God is taking Allie (and our family) on an amazing journey. Keep the prayers coming. Share Allies page. :)
Posted on: Tue, 14 Oct 2014 11:20:50 +0000
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