PH probe and motlity testing resluts

As promised, here are her results about her testing last week at Children's. I got the call on Tuesday however we had people over Tuesday and Wednesday nights and Jillian has been up late and then up multiple times during the night all week. (last night she tried to pull her tube out in the middle of the night, I woke up to her pulling her extension set, thinking it was her passy holder... yeah thats not a nice wake up call) 

PH probe:
This is the test that measures reflux that comes into the throat. Jillian refluxed 69% of the time in 24 hours! The doctor said it should be less then 10%. They said 69% is really high. They questioned if the probe was in the correct place however the x-ray they did showed it was in the exact right place. They asked if it moved during the test. I told them that I taped it myself (and a good taping job if I say so myself) and the floor nurse measured it every few hours. It did not move, at least not from where it was outside her nose. They are thinking we might need to repeat this test to see if it comes out with the same results the second time around. That would mean a second hospital stay. We will see what they decide about this. While I don't wish for her to be refluxing 69% of the time, that would really explain some of the things that we see. (Is it bad that I am grateful that this test did not come back "within normal limits" because that would have sent us into an even more confusing spin) The doctor and I did agree though that a fundo is a last ditch effort and not something we want to do right now.

Motility testing:
During the test they told us that she obviously had a motility disorder, and then the head of GI came in and said that they thought they were viewing the wrong leads on the screen and while the test is going they can't view the other leads, however the data from those leads are still being saved so they can view them later. Upon further review there was not a problem in the small intestines like it originally thought. It had rithmic contractions like normal. The one thing that did show up strangely was that her stomach did not respond appropriately to food! BINGO! They said that maybe it was because there was not enough food in there however 55ml went in and they added oil to it to make it higher in calories. When she did take bottles daily, every 2 hours (over a year ago), they were only 45ml, so this is a larger amount then she has had in over a YEAR! They said that maybe we should try pushing her stomach to see what it would handle.  I then told them that it was not an option because apparently 55ml is enough to cause a miroasperation because we were now treating her for that from this little test. I explained to them that while Jillian did not puke during this test (amazingly) she did reflux a lot (this was the day after she refluxed for 69% of the day). I am not going to kill her lungs by trying to push her stomach. It was then decided that was not an option. The doctor said that makes Jillian a more complex case. She said that maybe we need to get all parties involved to meet. I would be game for that.

Outcome:
They want to start her on a new med called Cyproheptadine and take her off of her Erytho. I have now gone into detective mom mode about this med. With all of the other med changes we have done, I have know about the drug before hand. I have researched it and was knowledgeable about the medication however I had never really heard of this med before. As for most meds used for gastric motility, this is not the med's main goal. Motility meds tend to be meds for different things that have a side effect of gastric motility. With using a med for its side effects, you get.... all the other side effects, and the main effect of the med. Joy. This med can have some interesting effects. The main one is that it can make someone very sleepy... or stop sleeping. It also is used to increase appetite. This is one of the things that worries me because some people have said that their child gets so hungry they try to eat anything, even kids that medically can't eat. We will see. It is also controversial to put a child under 2 on this med and Jillian turns 15mo tomorrow. We will see. This next week we meet with GI and her primary doctor so we will see what everyone has to say then. We held off to start it until tonight because I don't like to start a new med and then send her to school the next day. I want to see what is going on and how she is responding.
They also asked us who we would like to keep as our main GI doctor (our current doc or the motility specialist). I, as respectfully as I could, said that we really wanted to stay with our current doc. There are a lot of things that go into that choice, but I was so happy that they gave us that choice!



On a side note about Jillian's microasperation adventure... her cough is still here. The sound of it changed. I am debating if I am going to call the doctor tomorrow or try to wait it out until her well baby check next week. At one point today she coughed for almost 5 minutes straight. The cough is starting to sound more and more like the cough she had this time last year when she was admitted for what they thought might have been whooping cough. She also cried almost all day today. If you know Jillian, you know that is not like her at all. We will see what tomorrow brings...