In meeting with Dr. Tipnis (GI at Children's), he is recommending we do a couple more tests for Allie. He thinks a lot of Allie's eating problems and low tolerance volume has to do with her gastric emptying. Of course we don't know this for sure. Allie has had two gastric emptying tests done previously and the first test showed a significant delay and the second test showed a slight delay. It has been a year since she had this test and previously, the test was performed with liquid. Now that Allie is on a BD, her stomach could be emptying completely different than before.
So, Children's Hospital of Wisconsin is now performing a new type of gastric emptying test with solid foods. Dr. Tipnis would like Allie to get this done. In addition to this test, he will also do a small intestinal transit test which basically is going to follow the food go through her intestines and this will help determine if her intestines are working properly. These two tests will take 6 hours.
In addition, Dr. Tipnis wants to do another endoscopy on her to look for eosinophils in her esophagus and stomach. He would also like to give her a botox injection in her pyloric valve in case her valve is becoming week and that is delaying her emptying.
Since Allie can only handle a low volume of food through her tube at a time (4-5 oz), Dr. Tipnis seems to believe that:
1) Allies stomach doesn't stretch
2) She could have a neurological reason that her stomach doesn't stretch
3) Her pyloric valve doesn't open properly
There is no test to determine if someones stomach stretches or not, so the tests mentioned above are the next best thing. Dr. Tipnis would like to get these tests scheduled early October.
I haven't read a lot yet about the botox injection in the pyloric valve but if you or your child has had this, I would love to hear how it worked out.
So, if we proceed with all the testing Dr. Tipnis is recommending, Allie will have a busy little schedule for a couple days.
In the meantime, we are working on trying to increase her volume tolerance and we are increasing her feeds from 4 oz to 4.5 then 5 oz. Of course the trick is to do this with NO VOMITING! She's being a champ like always!