Kady Update

Went back to the Allergist today to rethink our strategy being the liquid diet so far has been a flop.  I'm  going to hang on to all the formula (100's of dollars worth) in case we need to revisit it in the future.  The meds he had mentioned previously that we could put Kady on are a year long commitment.  Not sure why, but once you start there is no stopping them for one full year and after that who knows what happens...not me.  We didn't discuss it because we aren't there yet.  We are back to a crap load of testing...oy vey.

First on the list....a full DNA or Genetic Testing and sweat test for Cystic Fibrosis.  We are VERY confident that she will test negative for CF however the genetic testing will be able to tell us what other gene mutations she has (being there are any) in conjunction with the CF mutation she already has.  When I say the CF mutation she already has, I mean that she is a carrier of the CF gene and that is a mutation.  I'm a carrier too.  That part is no biggie unless she marry's a person with the CF gene as well and wants to have kids.  But, there could be another mutation that is causing the chronic diarrhea.  That's what were looking for and the rest is just to eliminate all other possibilities.  If they do find another mutation, I don't fully know how it relates to CF exactly...at this point.  I was honestly on information overload.  I believe that even then, it doesn't mean she has CF.  I'm sure it'll all make sense soon.

Next, we are doing patch testing.  It's still possible that there is another food allergy that has yet to be detected.  Patch testing will pick up on different components of the same foods, plants, animals, allergens she's already been tested for that the skin test and blood panel wouldn't have picked up on.  For example, she's not allergic to peanuts according to the skin and blood test results however, she could be and the patch test would pick up on that.  So we leave the patches on for 3 days ( no bath) and then take them off and see what the results are.  I hope she's able to sleep well.

Lastly, we will be rescheduling a colonoscopy and endoscopy in about 2 months (after I have this baby...ugh) to see if the eosinophils in her esophagus, intestines and colon have increased or decreased in the past year.  Her's are at 16 and the magic # is 20.  Having 20 or more eosinophils in a cluster means it's food allergy related, 16 meaning it may be food allergy related it may not.  If they drop even lower that would be great.  You want 0 eosinophils.  In the meantime we will start her on Prevacid....remember she has the reflux also.  It's possible that her eosinophilic esophagitus(ee) is a reflux ee and therefore the Prevacid should help.  We will follow up with him the first of April, all testing will be done before then and then we can schedule the 2-oscopy's.

This weeks goal...get her in for the CF and sweat testing.  Test results take about two weeks to get in and GOD forbid they find something genetic worth looking into, I'd like to know before I bring Zoe home from the hospital so they can just test her while we are there.

Needless to say...yesterday was not a good day for me.  Other than minimal conversation here and there regarding Kadence and I as being carriers of the CF gene, I was hoping to NEVER have to hear those words spoken in regard to my children's health.  It brought back a ton of memories.  I guess it'll be good for peace of mind to get this out of the way.  I just hope nothing crazy pops up because I AM NOT prepared to deal with it and I know Dom would be even less so.