And the circus continues

Thursday was supposed to be a turning point for us. Lucy was going to have her breath test for SIBO done at CHKD!! Once we got the data from that showing she is positive, we were going to be able to finally treat her for it with antibiotics. I was excited!!!! They had us originally scheduled for the lactulose breath test for SIBO, but a week before the test the office called and told me the Dr had spoken with pathology and changed it to the fructose breath test. I questioned her to make sure they were going to do it in such a way as to check for SIBO, and she assured me that yes, they were, this is what they were told to do.

Unfortunately, it didn't quite go that way. We got to the lab and Lucy gave her baseline breath sample. That alone made my eyebrows go up, because the tech did not roll up the discard air bag for her weight like she was supposed to. I kept my mouth shut, but should not have. Lucy then drank her fructose drink, and the tech told us to come back at 1, 2, and3 hours. Um, what?!? That is the same exact test we did at home...this test was supposed to be done every 20 minutes for at least the first hour. I was going to lose it, because this meant this was all a complete waste of time. The tech was willing to do it every 20 minutes, however, even though she had "never herd of testing for bacterial overgrowth that way."

 Feeling disgruntled, I went back into the waiting room. They had computers there because it was the NICU wait area, so I hopped on one, hoping I could pull up the articles I needed forthe argument I assumed was coming. Of course, the computers were blocked from email and social networks, the two places I had these things bookmarked. Awesome. Luckily, when the pathologist came out to speak with us, she was super nice. She had decided we should do the test every twenty minutes the whole time, for more data. She wanted me to email her whatever information I had, and was happy about Lucy's first fructmal test and where we had it done, since Quintron is the same company who makes their machine and is excellent. She also said it's different nowadays, "patients do a lot of educating of the doctors." While her statement made me very happy to have someone who is open to new information, it also irked me. We shouldn't HAVE to be educating our doctors. That is what we pay them for. Otherwise, their purpose is what? To write out prescriptions for tests and medications we research and request? Might as well just ditch the doctors and make it an open market.

At any rate, we were there for three hours while Lucy completed the test. She had been fasting since bedtime, and was really hungry by the time we were done. She had had some stomach pain during the test from the fructose, but luckily the Barbie Mermaid movie I had bought for her on my iPad kept her well distracted. It's really no fun giving your child a big drink of something you KNOW will make them sick. She had loose stool that afternoon, a terrible behavioral reaction, and belly pain all night long. Poor thing. :(

The same afternoon as the test, I received an email from the pathologist letting me know that Lucy's test was fine, she showed no signs of SIBO, or even fructmal. Um....what?! She already had a very positive fructmal test. I called her immediately for the numbers, but she didn't have it in her hands anymore. She said her baseline was 15 (which is much too high) and all the other numbers were like 7, 5, 10, etc. I told her it didn't make sense, and by the end of our conversation she said I should talk to the GI about repeating the test. Wonderful. I spent the night worrying, researching why, and even read Quintron's 100 page manual on the tests online.

None of this sat well with me, but I had to wait until the next morning to get her actual numbers. I called first thing and had them faxed over, and sure enough, they were odd. (‎15, 8, 13, 20, 11, 7, 5, 6, 5, 5...baseline followed by sample every 20 min.) None of it made any sense. After doubting everything we thought we knew, I decided to call Quintron/Breathtrackers for information. They were, in a word, WONDERFUL. The woman I spoke to pulled Lucy's file and saw her first two tests. She knew from the data and our discussion that I had done it all perfectly, and she was actually surprised I did it so well with such a young child. She confirmed my suspicions that they did the test wrong,, that that bag should have been rolled down to the marking for her weight because she is under 100 pounds, and that they never should have had her blow into the bag more than once. By doing so, the air going into the sample bag was not the rich mid-lung air, but instead dead space air...essentially room air...which explains the ridiculously low numbers. She told me that if inwere to decide to let the hospital do the test again, to make sure the lab calls her before doing so so they can get proper instruction. I'm also pretty sure she is calling the lab as well, because this was all done so wrong. (Her real recommendation is that I get the prescription for the lactulose test and do the test at home again.) She even pulled up the info on CHKD and knew which machine they have...and it's old. They don't make it anymore. It only tests for hydrogen, whereas the newer, digital machines also test for methane in case a person has methane producing bacteria, and carbon dioxide, which is extremely important for testing the validity of a sample. If a sample is wrong, the carbon dioxide concentration will be under 1.5%...like the composition of room air. Lucy's first test had carbon dioxide levels around 3.5%, for example. Her one sample that was incorrect on her fructose test the first time had CO2 of .80%, which is why the sample was thrown out. (The woman I spoke with actually did the conversion formula for me while on the phone, and told me that sample's reading converted out to be about 34, though with the CO2 levels what they were, it only read as 5!) Because their machine is lacking the ability to measure these other gases, they have NO IDEA if their samples are proper.

Everything about this hospital just gets more and more disturbing the more time we spend there. For one, this is supposedly the go-to hospital in the area for these hydrogen breath tests, even for adults, yet THEY ARE DOING THE TESTS INCORRECTLY. How many people are walking around out there, thinking they are crazy or have untreatable stomach pain because all of their tests were "negative?" Second, the lab and pathologist assured me of this, that they do this test all the time, for many years...yet both our GI (who is new to the hospital, but has now been there since January) and the people who work with her in the office and made the callbacks to me, all told me that they don't do some tests at the hospital, only the lactose breath test. (Which never made sense to me, bc it's the same test, same machine, just a different sugar solution that the patient drinks.) Third, when we first started with this Dr back in January and she was suspecting EoE and told me she was diagnosing it 2-3 times a week at her old practice in AZ and I asked her if she was familiar with TIGER protocol (the gold standard for diagnosing EoE)...SHE DIDN'T EVEN KNOW WHAT THAT WAS.). Not to mention the time I called three times in one week and never, ever received a callback. Or when I called Patient Advocacy to complain about THAT, and never received a callback from them, either.

So, here we are, again, nowhere. My kid had to suffer for two days from a fructose reaction for nothing, we wasted four hours at the hospital, Stephen had to stay home with the other two on a work day. I complained to the pathologist, who apologized, is trying to have the charges removed, and is supposedly going to look into going new equipment for the. I have left two messages with the supervisor of the lab. I have left messages for the GI who, of course, was not in on Friday. I'm not sure what our path will be tomorrow. I want the GI to either prescribe antibiotics to treat her SIBo based on symptoms or prescribe the test so I can do it at home. I'm also considering a new hospital, like CHdren's Hospital of Philadelphia, which seems like it may have physicians versed in this disorder. All I know is, this is all madness, and shouldn't be happening. Why should it be so hard to get treatment for my daughter?!