Saturday, February 4, 2012

Update on Mayo Visit with Jason

I figured it just easier to write a brief summary of what we learned/ tested for at the Mayo this past week.

We met with Jason's Specialist in GI Peds on Monday morning.  He has several things working against him for certain at this point.  He was born with an extremely long colon.  Which means that it takes longer for the digested food to pass through it all, in turn pulling out more water along the way.  Jason also has very slow transit digestion.  This means that either he just has a system that moves really slow or that the nerves aren't sending the right messages at the right time to move food along the path correctly.  They call it a mobility thing.  That being said, there still are some unanswered questions to why, underweight, malnutrition  issues, tummy aches, ect.  

The doctor ordered blood tests, bio feedback, and sweat test for this trip and will schedule a endoscopy and colonoscopy in the next few weeks.  The blood test were for protein levels, celiac, and a few other functions.  They all came back as normal.  The endoscopy will tell us for sure that  celiac is not present, as I have a gluten intolerance/allergy.  Even if that comes back good she said there is that chance that gluten is still the culprit.  As cilliac and gluten allergy are different and elimination is the only way to know for sure on the allergy, but until we are done with the endoscopy we will leave it in his diet for now.  The bio feedback was to test how his pelvic floor muscle are working and resting.  She does think the week long therapy would be helpful for him, as since he has had issues since birth he is more likely to be afraid of it being painful and this would help him understand better how to relax and what it should normally feel like down there.

The sweat test was for Cystic Fibrosis.  His test came back as borderline CF.  Which means we have to retest.  We will be able to do this on Tuesday in St. Cloud.  If that test comes back borderline again, they will have to do a blood test to see if he carries the gene.  If he does then we would get sent to a CF Specialist and they would have to do further testing to see if he actually has CF.

When I talked with her on Wednesday afternoon, she feels we will exhaust all possibilities before sending him on to a mobility specialty clinic.  This is something that they do not do at the Mayo for Peds and there are only 3 or so in the US.  There they would monitor how his nerves function along with his muscles and figure out the best possible solution for mobility issues.  She said they are a bit more pushy on the surgical aspects and she would like to make sure that we have exhausted all other methods first.  The most sever is getting a bag.  Which I DO NOT want for him at all!  The other is putting in a port by his appendix to allow us to flush his colon out with saline or whatever.  This can be taken out if over time it gets better, or they find new treatments that work.  But again this is going to be a last resort if we can not find any other answers.

For now we are doing our daily med regimen of Miralax, bisicotal, then adding in a low level antibiotic 3 times daily to hope it gives him the diarrhea, and 1 tbsp mineral oil to help make it slipperier.  We continue with the added fiber and new learned info from the biofeedback hoping for some relief for Jason.  If this doesn't do anything, we can add in a zelnorm like drug (zelnorm is no longer on the market due to heart trouble side effects) to see if that helps to speed up his colon/digestive track.

I will be touching base with the doctor in a week or so and will hopefully have a time set for the endoscopy and colonoscopy but that will more than likely not be until the middle of March as John's parents have off a few weeks and the doctor has two weeks off in there too.

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