Another Round of Testing

That following week we took her in for the anorectal manomentry test.  This looked at the function in the rectum, etc.  She was a champ and the results were basically normal which was a big sigh of relief.  This told us now that the problems she is facing do indeed lie higher up in the colon.  The doctor again tweaked the medication and said that we would need to keep a very careful eye on her for the foreseeable future in order to avoid another impaction.  This would mean getting checked every other week for a while.  We would avoid further testing until the medication proved to be unsuccessful and we would need to look into other measures.

At our next appointment we took both kids so that Levi could start his clinical trial now that he has been diagnosed with Malabsorption of Sucrose.  While there, they took cheek swabs from both kids as they decided they wanted to look into whether or not there was a genetic connection between what was going on with both children.  She also ordered an MRI of Levi's spinal cord to look for potential nerve damage as a reason for the issues that he is having and ordered the same anorectal manometry test that Charlie had just had to see what his function was like.  At this same appointment the doctor decided that the Miralax was no longer working for Charlie and that we would take her off of it and just give her the suppositories and the mineral oil.  Hopefully we would get more production through that.  The plan was to check back again in two weeks with both kids.

About two weeks later we took Levi for the manometry testing.  It was quite a different experience than with Charlie.  Levi panicked when we took him into the room.  We had a Child Life Specialist with us who showed him pictures and brought toys, but it did nothing to lessen his anxiety.  It took four of us to hold him down in order to start the test.  He was terrified and uncomfortable and there was no amount of convincing him that it was going to be over quickly.  What we found in the test was that he had appropriate function but was confusing signals when it was time to go to the bathroom (e.g. would push out when he was trying to hold in and vice versa.)  We are hoping that with age and development this will get better.  In the meantime, we got the prescription for the enzyme he will now be taking when he eats in order to be able to absorb sucrose.  It is a lot of work but we noticed a difference right away.

At the same appointment we checked in about Charlie who had not been having the success we had been hoping for after cutting back on the Miralax.  We got new instructions for her, bringing the Miralax back into the regimen and would meet back soon to check on both of the kids....