15 June 2010

Update: CF Clinic Appointment

Bennett's appointment went well.  We shared with the doctor about his bout with rectal prolapse.  It was nice to come to his appointment well informed on this issue.  It is very true - when one has a chronically sick child, the parent becomes an expert in the illness themselves.  So, the conversation was very respectful, quick and helpful.

The Doctor asked us if his intestines had come out about a centimenter and "went back in neatly afterwards."  We affirmed her question and felt glad to know that this is relatively "CF normal."  The doctor suggested that we put him on Miralax daily (which we expected) until we're confident he's not having problems with this again.

Dr. Dambro explained that he is getting it because of straining.  (Note: We're pretty sure that "straining" happens for everybody...but not everybody experiences their intestines peeping out when they do!)  It seems that rectal prolapse is basically caused by intense straining.  So, treating the root cause will eventually treat it.

Here's the 411 on how you go from CF to rectal prolapse...
CF = thick mucus = blocked pancreatic duct = no digestive enzymes = undigested food = malnutrition/malabsorption = constipation = rectal prolapse

Bennett takes enzymes daily so that his food can be digested.  However, they are not the same as the natural enzymes our bodies make.  Therefore, not every bit of his food ends up being digested like he needs.  This is why many CF patients tend to be skinny, require a fatty diet and struggle with digestive issues all of their life.

We have read blogs about other CF kids who spend years taking a daily dose of Miralax for this reason.  So, we're happy to do whatever it takes to keep Bennett's insides happy (and in their proper place)!

In other news, Bennett's lungs sound great and Dr. Dambro is happy about his growth.  We did have blood drawn from Bennett in order to confirm that his liver enzymes are back to normal.  We expect this is the case but Dr. Dambro wanted to make sure.

We have begun the Miralax immediately and will keep an eye on Bennett's pain when making a dirty diapers.  We hope to hear back regarding the liver enzyme test on Tuesday.

Our next appointment with the Pulmonologist is next month.  Until then, he gets a good bill of health!

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