Okay.....so maybe you guys should get used to only expecting one post or so a month, because that's all I ever seem to be able to muster up. However, now that I've figured out how to download Firefox on my computer here are work, maybe I will actually be more successful about writing a little more often. (Previously the only internet browser I had access to was an old version of Internet Explorer....gag. It was so old/outdated that starting one day a few months ago, it wouldn't let me write text in the screen for a post. So needless to say I didn't write blog posts at work anymore after that. Tried downloading Firefox then, but for whatever reason it wouldn't run. But problem solved now!)
Anyway, since I'm about a month behind in posting about the good stuff, I want to back up to then--when both Sam and I had our endoscopy procedures done to be tested for CSID. Mine was on August 7th, and Sam's was on August 14th. I was dreadfully nervous for weeks about the whole thing, whereas Sam had no fear and showed up the day of his procedure cheerful as could be. Turns out he had the right attitude about the whole thing, because it really was painless.....but don't tell him I said that because then he will think he's always right ;p
When I had my procedure done, everything was textbook. I showed up at 8 am for a 9am procedure, got asked a million questions, was hooked up to an IV, and had to wait an extra 20 minutes for the doctor who was running late. I was probably shaking like a leaf (which I'm sure they are used to) right up until they injected me with the sleeping drugs in the procedure room. I remember looking at the time on the clock right before I conked out (9:30) and thinking that I was really sleepy and wanted to take a nap. The next thing I knew I opened my eyes and looked at the clock.; this time it said 9:52. I asked them if they could arrange a longer nap for me next time because I still felt tired! Then it was the half hour observation after, complete with apple juice to drink. Best half hour ever for me, because I got to eat again and wasn't so dreadfully nervous anymore. The doctor said everything looked good and that they would let me know when my results were in.
I was expecting the turn around time to be a couple of weeks, because that was how long we typically waited for the boys' enzyme results to come back. However, since I work in a lab, and knew my results went through a sendout lab in downtown Salt Lake that we have access to at our hospital, I went and requested my records a few days after, just to see if the numbers were in. If you were wondering, the reason I couldn't just look them up myself is this really annoying policy about not being able to pull any medical result unless it pertains to a current case you are working up. Pretty sure that's the policy for anyone working in healthcare, but man it sure is a temptation! Anyway, after requesting my results, I was pretty sure they would tell me they weren't ready yet, but I got lucky and they were already done!
I remember waiting just a split second to flip over the page and look at the results. I knew there were three distinct possibilities: my levels would be totally normal and indicate that I only carried CSID, my levels would be lowered and it would be difficult to tell if I just carried or had CSID, or my levels would be as bad as the boys' and I would show definite signs of having CSID. As crazy as it sounds, I honestly wanted to see some concrete answers; I wanted my enzyme levels to prove that I had CSID! It would provide answers of my symptoms since childhood, and it would show just why the boys were so sick. It would even give me a solid reason to be done with children (but man is that a whole 'nother bag of worms to open up at another time and place). I did finally flip over the page to read this:
~Lactase: 15.3 (normal 15 or greater)
~Maltase: 79.9 (normal 100 or greater)
~Palatinase: 4.6 (normal 5 or greater)
~Sucrase: 13.2 (normal 25 or greater)
I wasn't exactly sure how to feel about those numbers--they pointed to a mild to moderate deficiency, which explained some of my symptoms, but they didn't give me the big answer I was going for: one gene for CSID or two?? When I asked the doctor that question the following week at Sam's endoscopy, all he could really tell me is that I would be a good candidate for diet change and enzyme therapy if I was going to eat a lot of sugar. Wasn't exactly a helpful answer, but it has tempted me to give Sucraid a go when I load up a big bowl of ice cream. Not so sure I can just cut out my beloved starch though :/
Anyway, one week later, we returned for Sam to have his endoscopy. My favorite part of the whole experience was hearing him promise the whole endoscopy staff cookies as he was coming out of the sleeping drugs. Good thing they only have like 10 people back there LOL. The only really interesting thing of note about his procedure was that he has a condition called Eosinophilic Esophagitis. Basically, Sam has an allergy to something he eats (probably has something to do with his seafood allergies in my opinion) but his is pretty mild. It can occasionally cause trouble with food feeling stuck as you swallow, which Sam complains about every now and then, so the doctor gave him some meds to take for it. Fairly easy, but I found it interesting because it seems to pop up more often that I've ever heard it before on CSID support group boards.
Anyway, the Saturday after Sam's procedure, I told him that he should come down to the hospital to visit me during my lunch and subsequently request his lab results. So he came down. You should know before I tell you how it went, that I have been convinced for quite a while that Sam actually has CSID and that I'm the carrier (at least). This is all symptom based, but it had kind of become ingrained in my mind. The first the Sam said when I saw him was "You aren't going to believe this". I figured he had numbers like the boys and was just in total shock. I looked at his result paper and went into total shock MYSELF.
~Lactase: 22 (normal 15 or greater)
~Maltase: 200 (normal 100 or greater)
~Palatinase: 11 (normal 5 or greater)
~Sucrose: 51 (normal 25 or greater)
My jaw seriously must have dropped to the ground. Sam has always been much more classically symptomatic than me, so I entirely expected his numbers to be really bad. Not really good. I remember finishing the rest of my work day in a haze, and really almost angry. I was actually convinced for a day or two that the testing reference lab majorly screwed something up. I wanted to those numbers to reflect the struggle that Sam has with foods, and they weren't! I know that some people are quite symptomatic carriers, but it just wasn't the answer I was looking for in my puzzle. At least over the past several weeks I've come to be a bit more at peace with it. They are simply numbers and a guideline. The real answer is in our genes.
At my request, our doctor has referred us to a genetic counselor, who we are going to visit with on Tuesday. I say at my request, because the doctor insisted we see a genetic counselor before getting the genetic blood testing ordered. I don't really understand why, but I will do it if that's what it takes. Maybe we will learn something in the process--I'm just hoping that we don't have to teach this genetic counselor about CSID, but I will go prepared in the event of that. Hopefully, in a month or so, we will finally know if our boys just both hit the unlucky genetic jackpot of each inheriting CSID, or if one/both of us parents gave our kids worse odds.
Btw, in reference to the title of this post, I realized while writing that in our family we have had three different endoscopy procedures in three different months! Aren't we just so much fun??
