Katie had her appointment with the Endocrinologist a few days ago (on Thursday). We left that appointment with more questions than answers. Katie does not appear to have diabetes, and for that we are very glad! However, we still don't know what is going on, and we are not feeling very glad about that. The Endocrinologist has a "theory" that Katie's body is being overloaded by the "massive" amount of steroids she takes each month. His theory is that Katie's adrenal system shuts down during the 5 days (each month) she is on steroids, and her body stops producing its own steroids. He believes that as a result, when Katie goes off the steroids her blood sugar goes too low. The doctor suggested giving Katie additional steroids immediately following her monthly dose, and then slowly weaning her off, in an effort to allow her body to readjust and hopefully avoid these episodes of low blood sugar.
The doctor asked us what we thought about his theory. We told him we had not made a connection between the low blood sugar levels and the steroids. We believe it is regularly (but randomly) happening off and on, and not just when she is coming off of her steroids. I told the doctor I had not been able to find any kind of pattern, or make a correlation to any one thing. However, in saying that, we also had not been keeping a written record of Katie's episodes, because we had been led to believe this was a "normal" reaction to her chemo (which we now know is not the case). The Endocrinologist asked us if we wanted to test out his theory and give Katie the added steroids. Scott and I looked at each other, and we both shook our heads no, and we told the doctor we did not feel comfortable with giving her more steroids based on a "theory." (Thank goodness Scott & I think alike!)
The doctor said there was another option. He said he could give us a prescription to have labs drawn, and then we could try and endues a low blood sugar episode by having Katie fast. If her blood sugar went low, we could take her to the nearest lab and have labs drawn. He then asked us how close we lived to the nearest lab - I told him 10 to 15 minutes. The doctor said he did not feel comfortable with that. He said it was "too dangerous." He did not want Katie's blood sugar to stay low for that long. So, we were at an impasse - then I had a thought. I told the doctor Katie would be fasting anyway on April 3rd, because she was going to the hospital for a spinal tap. He said that would be a perfect day to "test" her, since she would be fasting anyway. The nurses could monitor Katie, and if her blood sugar went low, they could draw the labs while she was there. It is my understanding that if we get the labs done while Katie's blood sugar is low, then we will get some definative answers. I asked the doctor how we would proceed if Katie did not have an "episode" that day (due to fasting). He told me, "That would just reinforce my theory about the steroids, and then we would start her on the additional steroids". He gave us a blood glucose meter, so we could test Katie's blood sugar on the days we thought it was low, and then we left... Like I said, not a lot of answers, but still a lot of questions!
I worried about it the rest of the day. We do not want to give her more steroids unless we have to. I understand the doctor's reasoning, and we would do it, if we knew that was what was needed... But more steroids are the last thing we need, if it really isn't needed! Anyway, after worrying about it all that day, something finally came to me. I checked and double checked. I remembered that Katie had a low blood sugar episode on March 4th, three days before our appointment with our Oncologist, Dr. Dana. Three days before, meaning almost an entire month after her last dose of steroids. That would debunk the Endocrinologist's steroid theory! (I do not have it documented, but I was able to piece events together, and I know for sure she had an episode that day - and that is what prompted me 3 days later to bring it up to Dr. Dana).
Katie has not had any episodes this week... Until today. I started writing this blog post earlier this morning and I was hoping to have it completed before the kids woke up. However, Conner came downstairs and said Katie was crying for me and that she needed help. I knew what that meant! I grabbed the glucose meter and the phone (Scott was already at work). I called Scott and he "walked" me through it. I tested Katie twice. Her blood sugar was 40. It should not be lower than 60.
Conner was very sweet and he helped me take care of Katie until she was better. I gave her juice and a banana. When she was feeling a little better, I took her downstairs and fed her breakfast... So, once again, this seems to debunk the Endocrinologist's steroid theory. Katie's last steroid day was on the 11th - two weeks ago - and this time, it will be documented! Katie's low blood sugar may somehow be connected to the steroids (and all the other meds she takes) but it does not seem to be directly connected to her stopping her monthly 5 day dose. We will keep on keeping track, and see what happens between now and April 3rd, and then go from there. Scott promised me we would not do anything that we do not feel comfortable with, or that we do not feel is right.
Jeffrey R. Holland said, "He wishes us to come unto him, to follow him, to be comforted by him. Then he wishes us to give comfort to others. However halting our steps are toward him - though they shouldn't be halting at all - his steps are never halting toward us." ("Come unto Me", Ensign, April 1998)
No comments:
Post a Comment