"Suffering the Slings and Arrows of Outrageous Fortune"

Doctor Update 2

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!


[Side Note: He did answer a question I had since finding out her lactase level was so low as to be practically non-existent: He said it is probably genetic. An injury to the small intestine can cause low levels of lactase, but it wouldn’t be so low and it should heal. A level of 1.1 indicates there is some genetic factor at play. Not sure I totally buy that, but it is as good an answer as any at the moment.]

Comments on: "Doctor Update 2" (4)

  1. Just wanted to mention, the way my goiter was diagnosed was via an ultrasound on my neck… my thyroid levels are always perfect. What happens is, as my thyroid dips in output it “grows” in order to maintain the right amount of hormone.
    mine can be felt to be slightly enlarged via touch exam, but an ultrasound showed it was much larger then could be felt via exam.
    so, if the thyroid blood levels come back normal, it might be helpful to have an ultrasound to rule out a goiter and/or other issues that might be the issue.
    Hoping the gastric emptying test is helpful. I know gastroparesis can come and go and have heard that sometimes the gastric emptying test might not catch the issue.

    • Interesting. We have thyroid issues on both sides of the family, so I have always felt that they should have been keeping an eye on it for her. But, this lump in her throat is odd – one time there was a visible lump around her esophagus (on both sides, although the right side was the worst) when she tilted her head back and you could feel it on both sides of her throat as well. Then, a week later it was gone. It wasn’t swollen glands and her esophagus was where it should be (it can shift around and sublex or dislocate or something). No doctor has seen it or can feel it, so I sound crazy, of course.

      Thanks for the suggestion of an ultrasound – I will definitely keep that in mind as we move forward with this!

  2. Michelle said:

    Dr Garza ordered my daughter’s GES also. But only the 2 hr one. The 4 hour is better. Push for it. The test it’s self is not bad.

    • Yeah, Dr. Croffie was insistent on the 4 hour test, so one way or the other, that is what will happen. How is Meg doing? Em is in a moderately ok period right now, but there is still so much to juggle and it feels like we are always teetering on the edge. Em is most worried about the test requiring her to eat something that she can’t tolerate – that is what a couple years of dealing with doctors who treat you like crap will do. We are trying to assure her that it will be fine and they will work with her!

      Meg had a gastric pacemaker didn’t she? How is that going?

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