Emily has been busy again seeing lots of doctors. We went last month for a follow-up GI appointment and her doctor decided she wasn't doing as well as she would like. Especially since she has started using the restroom several times a day to go No 2. I didn't think anything of it but the doctor always asks so I mentioned it to her. She sent her for blood work and one of her Celiac tests came back positive, but the doctor said that this celiac test can show positive if she just has some inflammation. She said she would like us to do another endoscopy to make sure before we start putting her on such a restrictive diet and she also wanted to see how her eosiniphil levels were. We just got the results back yesterday and she said that the celiac was negative (YAY!) and that her eosiniphil level overall is much better. It was 25 before and is now down to 3 (ulimately they want the number to be 0). The only thing that has changed is that she used to only have it in her upper and lower esophagus and now it is in her stomach and upper intestine as well. Apparently it can move throughout your whole GI tract. If it was still really high numbers in all these areas she would have had to start an all formula diet. Since the numbers are improving she just changed a few meds around and asked us to go 100% dairy free for Emily. At her GI appointment the Dr also noticed that her tonsils were swollen and she said that is common for kids with EE so she is sending us to an ENT to make sure that she doesn't have chronic inflammation with them. If she does she will have to have them removed because the doctor said it can make it harder to keep her EE under control. We will see the ENT at the end of this month. I am hoping that everything will look good and that they were just swollen that day.
JJ also got to visit some doctors within the last couple of months. We took him to an allergist because he had diarrhea for several months and I could tell there were times it was worse than others, but I couldn't pinpoint which food was causing it. It was kind of acting the same way as Emily and Maddie's diarrhea that they get when they eat bananas, but he hadn't had a banana yet. His allergy testing came back fine, but in the course of asking questions the doctor said several of his "weird" things he had going on kind of sounded like Prader Willie Syndrome and asked if he had ever been tested for that. He hadn't so the doctor tested him and luckily his test came back negative. The Dr said that it is a chromosome problem and that the test isn't 100% accurate so he might still have it but his likelihood has gone down. Prader Willie is more recognizable the older they get, so we are just supposed to keep an eye on him and if he continues to show symptoms of it have him tested again in the future.
He is still doing OT and gets to go to gymnastics (Tumble Time) once a week to improve his gross motor skills. He also started speech therapy and is doing that every other week. He is growing so much and has really started to say a lot more so I am sure the speech therapy will be short term.