We saw the GI doc yesterday – a follow up after her upper endoscopy in January. Personally, I felt we should have seen him much sooner, but was told this was the soonest we needed to see him. Needless to say, we are on the fence about continuing to see him and that is but one reason.
After the endoscopy showed that Em’s lactase level was strikingly low at 1.1 (normal being 15) Dr. C recommended that Em simply use Lactaid to reduce the symptoms. That she was lactose intolerant was not news and, while some of her symptoms clearly could be chalked up to it, we just didn’t feel that this was the explanation of all of her issues. So, against her objections, we recently started Em on a probiotic that has lactase enzymes in it (Digestive Advantage, Lactose Defense Formula). I figured it couldn’t hurt but wasn’t totally sure it would help.
So, yesterday, when the nurse asked if Em was having any pain, imagine my surprise when she said “no” and started talking about how the medicine had reduced her abdominal pain and life was so much better. (The nurse probably thinks I am crazy because I started asking Em all kinds of questions about it, since she had never [EVER] mentioned it helping and since her appetite has been poor and she has complained of feeling so bad recently. All the while, Em is sitting there as calm and maddening as only a teenager can be, while I am ready to pull my hair out.)
The end result is that the doctor walked in to the appointment believing he was the ultimate detective and had solved the mystery of Em’s symptoms. He was so happy that he had found the problem and suggested the solution and that the solution worked. He was headed out the door with a smile on his face when I mentioned that her other symptoms, the ones we originally came to him for, had not gone away and indeed were continuing to be problematic. His smile left and he shuffled back to the stool, sat down and got his pen back out to take notes. I felt a little bad for him but it was also sort of funny – he reminded me a bit of a small child who is told to sit back down because they have not been excused from the table and is reluctantly polite about it, but is inwardly thinking ‘ten more minutes with these people!”.
After we talked about her symptoms – poor appetite, constant nausea, early satiety, albeit LESS ABDOMINAL PAIN; and how any stress throws her into a downward spiral of worsening symptoms – he finally ordered the test that she should have had a year ago: a gastric emptying test. We are hoping to have it done at our local hospital – he said as long as it is the 4 hour test, not the 2 hour test, that would be fine. Em is not looking forward to it, but I am trying to tell her that, relative to the other GI tests, this one is not a big deal!
Also, we talked more about her swallowing issues. She keeps talking about a lump that makes it hard to swallow – actually, she has really complained about it when it is bad and that is rare for her – it helps me know that it really is significant at that moment. I have suspected it is a goiter – from what I have read online, it is possible for it to come and go, but Dr. C said that was impossible. Eh, when we get to an endocrinologist, I will consider what they tell me about the thyroid and possibly not even then, considering that so many are clueless about it. He did say we can just test her thyroid – again, something that should have been done a couple years ago but nobody has been willing to order it. [If I let it, the missed opportunities for proper care would drive me crazier than I already am!] He also suggested just trying Prilosec – GERD can cause that symptom and a PPI would help.
So, he has ordered 2 tests that should go a long way towards helping us figure out what is going on. He did say that whether the gastric emptying test is abnormal or normal, he can treat her symptoms, so that is a relief.
We like him well enough, but I am just not convinced that he knows enough about EDS to really do what is needed. I would much rather see Dr. Garza at Cincinnati. I went to this appointment on the fence as to whether or not we should try to get back to Dr. Garza and I left the appointment still on the fence. We will get the test done and see where to go from there, I guess. But, we are moving forward and I am thankful for that!