The Wheels On The Bus

It is very frustrating to keep going 'round and 'round.  The Gastroenterologists saw LillyAnna today.  This includes the doctor who did her scope but Lil's reputation obviously preceded her when the resident who spoke with us first said she knew all about LillyAnna and filled in information I left out even though we had never met her!  LillyAnna's previous scope showed a small spot of inflammation in her duodenum however they only found one small spot so it does not tell us much and is probably not the cause of her discomfort right now.  Unfortunately, they could not get into her small intestine with the scope because it was just too small and they did not have instruments that could do it safely.  With Lil's existing Pyoderma, it is too dangerous to try to force something like that and possibly cause more damage.  Even though her only lesions so far seem to be on the skin, it is possible to get lesions on the inside of her body.  Dr. R tells me they are different cells so that is unlikely but it is still a possibility that makes us cautious.  Especially with Miss "I don't follow the rules".  If there is inflammation in either of those places, it should be contained by the sheer amount of anti-inflammatory medication she is taking and her bloodwork does not show evidence of significant inflammation. So that brings us 'round to the fact that she is two weeks late on her Humira due to insurance/ pharmacy issues. The shot should be delivered tomorrow.  Will that help with the stomach issues?  Who knows, but I am not holding my breath. 
Which brings us 'round again to the idea that if it is not infammation, what is it?
We next talked about her relfux.  Although the gastric stomach emptying study showed only slight reflux the doctors think this could be the cause of her vomiting and lack of eating.  I cannot see how that makes sense.  What brings us 'round again is that Lil is already on the highest dose of reflux medicine allowed for her weight and she just began a new medicine in addition to that one that should help with reflux.  We agreed to give that medication (Reglan) some time to work.  All of this information together is poor evidence that her issue is reflux for obvious reasons. 
And those wheels make one more turn when the docs throw out the possibility that this is a behavioral issue.  Reasons I do not agree: one... she is throwing up daily (not behavioral), two... this issue with not eating or drinking has happened twice before and it always comes when she does not feel good or something is brewing, three... I just know my daughter. 
That brings us to medication.  The big question on everyone's lips is "Could it be the meds?"  Followed almost immediately by "She is on a lot of medication."  The mediation she is on is necessary.  As Dr. D stated so strongly today, he has never seen remicade anti-bodies as high as LillyAnna's.  This is saying something due to the fact that he is the chief of his department and her body is so small.  Therefore, it would be quite dangerous to take her off of methotrexate while she is on the Humira.  Methotrexate is the so-called "chemo" drug and it prevents Lil from creating anti-bodies to the Humira. It causes upset stomach.  'Round again, these issues with Lil have been happening a lot longer than she has been on Methotrexate. 
So basically I walked away from this appointment frustrated and with few answers.  We are going to do a swallowing study, meet with a nutritionist, see a speech therapist (they examine swallowing also) and try to get Lil to drink Pedia Sure instead of formula ($$$).  The formula is fine for her but the docs said we will get more bang for our buck with something that is more age appropriate.  I am not excited about this change as Lil is a creature of habit and loves her Similac Advanced.  Switching her might engage us in a standoff and she cannot afford that right now in terms of hydration.  Only time will tell right now.  So Bon Voyage Dr. R.... are you sure your cell phone will not work in the wilds of Haiti?