CHLA

July rolled around and I have to admit we were super excited for our appointment.  Kind of nervous to find out if we were actually barking up the right tree, doing the right things or was this all a bunch of hoopla for nothing and that she was actually fine.  We left plenty of time to get down there and met my cousin in the cafeteria for lunch.  He walked us up the the GI department and as we signed in they called us back.  They weighed Charlie, measured her, etc. and then took us back to our room.  Not a shock, but she still was not gaining weight.  The doctor came back virtually instantly.  Let's just say Charlie was not on her best behavior that day.  Lots of screaming and wiggling and paper ripping ensued.

We were able to go over the entire story.  Everything from birth until then.  Of course, we had all of the records from St. Johns but nothing from UCLA was ever sent even though we had requested them twice and even called to check on them.  We were able to tell her the results we knew and understood.  We talked about what we noticed, symptoms, etc.

She then mentioned something we had never heard before which was that oftentimes people who suffer from one type of motility disorder have problems with other functions.  Therefore, it would be likely that Charlie is actually having problems with her intestines and colon as well as her stomach.  We focused largely on her colon function at this appointment.  She explained that if the colon is not working properly and emptying as it should it can not send the proper signals to the stomach to empty starting a vicious cycle.  This only leads to increased slowing and delayed emptying.  If we could manage her colon function it could potentially increase the amount of food that could leave her stomach.  So, we needed to fix some of the issues in her colon, which at this appointment we learned were actually issues, something we did not previously realize.  We were to put her on an adult dosage of Miralax and monitor her closely.  We would be reordering all records from UCLA and meet back in a month to go over the progress we had made while on the Miralax.  Dr. P made no hesitation in completely agreeing with the other doctors.  Charlie DEFINTELY has gastroparesis.  We left feeling anxious, relieved and definitely overwhelmed.  The diagnoses was finally confirmed by someone who knows what they are doing.

We finally feel like we are in the right hands and with one of the few experts in this field.  Someone who could actually explain what is happening.  At the same time she had to tell us that this is incredibly rare, there is not much information out there about it, etc.  We don't know what life will be like for her.  Will it ebb and flow, get better, worse, etc.?  At that point,
we had a plan of action for the short term and were looking forward to an upcoming trip and hopefully some results from the new meds.