pH Probe Results

Overall, the pH probe was not too bad. Kate didn't see to mind the tube too much. I do think using the backpack was a life saver! She never once messed with the tube. Our biggest issue with the whole ordeal was keeping the tube from tangling around her while she tossed and turned in her sleep. I need to contact the clinic and advise them to give instructions on that before someone does strangle themselves in their sleep. When we went to have it removed, the removal of the tape on her face and neck was plenty enough distraction. I am not sure she even realized they were taking the tube out. She often tells us that her "boo boo's are all gone gone" and will point to her nose and iv site. She is such a good kid!

We met with the GI specialist, Dr. V, on Wednesday to follow up on the EGD scope and get the results from the biopsies and pH probe. Overall, everything looked good. There were no signs of severe reflux from the biopsies. The pH probe that she wore for 24 hours came back mostly normal. They consider anything below a pH level of 4.0, that doesn't bounce back up within 2 minutes (I think), to be reflux. It is normal to have the pH level drop below 4, it just shouldn't stay there for long.

Kate only had two episodes of "reflux" lasting longer than 2 minutes. One was just over 2 minutes and the second was for 13 minutes. While 13 minutes is a longer than normal time to be in "reflux", the doctor didn't seem to concerned. He doesn't want to do something drastic (ie. surgery) based off of one episode that didn't follow the rest of the results. There is a chance it could have been a mistake (ie. acid from drinking, eating, etc.). Over the 24 hour period, her esophagus was in "reflux" less than 3% of the time. I don't really know what normal is, but I got the impression this was fairly low. The results, coupled with the fact that her lungs have had NO improvement while being on high doses of reflux medicine, leads Dr. V to believe we are barking up the wrong tree. When I mentioned the possible cilia scenario, he seemed to think that it was much more likely.

He did go ahead and switch her to from Prevacid to Nexium for 12 weeks, just to see if she got any relief. He said if she didn't, it was most likely not reflux causing her issues. If it does help, then great! I was very pleased to hear these results for many reasons.

1. NO fundoplication, which is a pretty involved surgery that would be the next step if reflux was present.

2. Having the diagnosis on her file of reflux or GERD, as well as lung issues, causes everyone to assume she is aspirating, causing all of the lung problems. Now that we know that reflux is most likely not playing a role, it takes away that assumption.

3. Hopefully in 12 weeks, we will be 2 daily medications less and 1 specialist less!

My reason for agreeing to the scope, probe and biopsies in the first place, was to eliminate the guessing. If the medicines were not helping her lungs because her reflux was so severe, we needed to know that and do the surgery. If she wasn't having trouble with reflux, I don't want her on all of the medicine for reflux. I am very glad to have this done and to be able to remove that piece of the puzzle!

We go back to the medical center Thursday to follow up with AI (Allergy and Immunology) on the labs that were drawn, as well as with the pulmonologist. We will also go ahead and get her sweat test done while we are there to check for cystic fibrosis. We will also go ahead and draw labs for the test to see if the cilia issue is genetic (primary) or caused by the chronic infections (secondary). The following week we will meet with her new pediatrician to go over all of the news and make a game plan. Hopefully by the end of February, we will have all the answers we need to move forward with a plan that works! If I don't update (maybe even something fun?) before Thursday, I will try my best to get an update done then.