|Allie chilling last night after her bath in anticipation for her appointment today|
Allie's appointment with Dr. Brown this morning went very well. There was a lot of information covered and we answered a thousand questions in great detail. We were there from 9:45 till 12:00 so I feel like he took sufficient time with us and really listened to our concerns. Dr. Brown knew all the GI doctors at CHW and agreed with the tests they have already run on her. However, he does have some more tests in mind that might help us find Allie a diagnosis.
For starters, her immediate issue is her poop. For the past 2 weeks, her poop has been very loose and greasy. I mentioned it to the doctor and he wants to check her poop right away for C-Difficle. He thinks she has C-difficle from taking her antibiotics for Scarlet Fever several weeks ago. Since they will be checking this out, he is going to run some additional tests to see what her poop can reveal in regards to her digestive track. They will for sure be checking it for excess fat and several other items. If she has any type of absorption issue with her food, we are hoping that will also be discovered. In addition, Allie has been sleeping a lot more than normal and we are hoping it's just related to the C-difficle (if that's what she has)
Poop aside, Dr. Brown does have some other tests he would like to run on Allie. Now that he has met Allie, he would like to review her records again and then arrange to get all the tests set up. We are scheduled to meet with Dr. Brown again on November 22nd and at that point, we will decide what tests to proceed with. As a brief overview, here is what he is thinking we can test for:
1) Gluten sensitivity - Allie was previously tested at CHW for Celiac disease but everything came back negative. According to Dr. Brown, CHW didn't do the "full" celiac test so he would re-run the test and check for any type of gluten sensitivity. He said that Allie doesn't have Celiac disease but could still be very gluten sensitive which in turn would cause her to not want to eat. This test is a simple blood test.
2) Gastric emptying test - he said that when CHW did the gastric emptying tests, it doesn't look like they had the camera set to include the esophagus, which means they aren't able to tell if she is refluxing any of her solids. So, they could re-do the gastric emptying scan to test the function of her stomach and watch for reflux.
3) Reflux scan - they could do this instead of doing the gastric emptying test. This test uses less barium which is a plus since barium works like glue in Allie's digestive system. Dr. Brown thinks Allie might have something wrong with her esophagus in that food gets caught in her throat and it's uncomfortable and makes her not want to eat. He said that all of her previous scans showed something in her esophagus and Ii cannot for the life of me remember what he said it was. He said it's something worth looking into and he's surprised that the other doctors haven't looked into it already. Anyway, it can be pursued now so I'm not going to worry about it.
4) Intestines - Dr. Brown would like to look into the function of her intestines. While Allie was in the hospital on December 21, 2009, CHW did run a scan of her intestines and everything looked good, however they did find one spot on the end of her intestines that was questionable. CHW hasn't checked her intestines since so Dr. Brown would like to make sure that everything is functioning properly down there.
Overall, our appointment went very well and it's reassuring to know that additional tests can be done in hopes of finding a diagnosis. After our next appointment on November 22nd, we will determine what tests we want to proceed with and in what order.
As many of you know, I have been thinking of leaving the Children's Hospital and start seeing a new set of doctors. Dr. Brown confirmed today that he can set us up with a great Dietitian here in Wausau. We already have a mental health therapist, occupational therapist and a speech therapist established here so there really is no other medical professional we need right now. Hmmmm.....big decisions to be made on my part (and I guess Matt has a say also - lol). I probably won't be making this decision until after our next appointment with Dr. Brown.
So, I'm ready to call it a day and relax!!!!! I'm so happy her appointment is over and it's refreshing to know we haven't hit the end quite yet.
The great thing in this world is not so much where you stand, as in what
direction you are moving.
- Oliver Wendell Homes