Wednesday, July 9, 2014

Makenna Update - Another Breath Test

Makenna had a yearly check up at Riley. We were scheduled to go in and see the doctor and take another Fructose Malabsorption Breath Test. We decided to go the day before and stay with Aunt Tracy and visit with Aunt Jarilyn. Makenna was so spoiled! She loved every minute of it.

She got to meet Tracy’s bird and fell in love with it instantly. She thought it was the coolest thing it would stick its head in her mouth if she opened it.

We got to the hospital in the morning since she had been on a strict diet for 24 hours, we wouldn’t to do the test early. We were scheduled to see the doctor at 11 a.m. and her breath test at 8 a.m.

After Makenna drank the Fructose, the nurse helped Mak take the first breath and gave me the other three to do myself in the hospital. We had to wait an hour between each test. It was a long day but she did good. At this time there were no reactions. I did not like this test at all, she just blew through a straw into a test tube.

We then went to see the doctor at 11 a.m. we discussed how she was doing and his thoughts. Funny how he was telling me everything I have told him in the past but never took me seriously. It’s like he just read her chart and repeated it back to me. He said she is Zinc Deficient and to keep her on the vitamins but doesn’t think she need her multi-digestive enzyme. The only one he is concerned with is Lactase since the others are there, just a little below normal and to put her on a lactase enzyme when she eats dairy. He said depending on the test, he may went to test for Small Intestinal Bacterial Overgrowth because he doesn’t understand why the reactions are so delayed... even though I tried to tell him its normal for Fructose Malabsorption. It’s the same way for the other kids who have it. Do your research!!! I decided to just keep doing what we are doing, keeping her on the multi-digestive enzymes... why? Because it works!

He wants to see us again 6 months. Not sure why though. I may consider going to a GI doctor closer to home. Now that we know what is wrong with her, we just need to keep an eye on it, right? Do we really need a specialist (who really knows nothing about this... no one really does.)?

UPDATE: Results came back... INVALID. WHAT? Seriously? I am so upset. All this time we spent, the trouble Mak had to go through, the time off work I had to take... and the test is invalid? Why, because you didn’t train your nurse to do it correctly and had me finish the test. We are paying you to do it... so why didn’t you do it? Oh... okay, they wont charge us. Oh wait... but you did charge us. $900 for a test I could have done at home for $100. I was not happy. Needless to say, we wont be paying for this test, nor will we ever have one done again through your office. Outrageous!

The options from the doctor were... 1) You can come back and we will take it again. 2) Base the results off her reactions (which were only minor because when her stomach is so empty, it goes through much faster and she gets it out of her system sooner. 3) Test again at the 6 month check up. So I asked, well can we just re-take it at home? NO,... why not I ask? Well because you aren’t trained to do it and we want to use our lab who we trust and know is reliable. Wait... don’t you send it out? Yes we do. Okay, this makes no sense to me. Whatever. So I tell them no, we wont retest her. I will just wait and see and possibly do it myself at home down the road or retest in the future at the lab there. I wanted her doctor’s lab to do the test because I figured he would take it more seriously? Right? Well it’s not worth $900 and a possible success of the test.

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