13 March 2010

Enzyme Dilemma

Bennett started taking enzymes almost as soon as he started taking milk.  Even though he wasn't a ferocious eater (and, in general, has never been one), he was a champ at eating appleasauce and enzymes even at 1 month old.

All of this seemed to change around 4 months.  Slowly we began to see his resistence to his enzymes.  He now gags and cries when we put it towards his mouth.

Bennett uses his tongue to push the enzymes and applesauce back out of his mouth.  Clearly, he doesn't like it. 

Concerned that pushing him too hard might give him an oral aversion, we began trying something new - putting the enzymes through his g-button...

...until they got stuck (click picture for a larger image if you can't see them).  We ended up having to take Bennett's g-button out in order to unclog it.  

Here's another picture that might be more clear.  We couldn't believe that after only a few times of feeding him enzymes through the g-button, nothing would go through.  We were shocked to see it was *this* clogged. When even followed the manufacturer's instructions.

This is what the g-button looks like when it is not inflated.

In order to inflate, we have to put about 5 mililiters of water in it with a syringe.  To put the g-button in, we put it in Bennett's tummy deflated.  Then, we hook the syringe up to it, push in the water and inflate.

The formula is passed from the top of the g-button (see the flap on top?  that's what we use) through the skinny tube into his tummy while the water balloon stays inflated.  (See the tiny enzymes stuck in there??)

We cannot keep pulling the g-button in and out to clean it out regularly.  So, clearly, using the g-button for enzymes isn't working. 

Bennett is physically repulsed by taking the enzymes by mouth.   He even threw them up on us the other day.  (We decided to spare the details of that picture!)

So, we have contacted a speech therapist and our CF Clinic to see where to go from here.  We are a bit concerned because he still isn't putting toys in his mouth and isn't taking much milk by mouth.  Possibly there is some other issue going on?

We are also going to meet with Bennett's Gastroenterologist in the next few weeks as well.  Hopefully we can sort this out since not taking enzymes is not an option.  Oy, Cystic Fibrosis!

1 comment :

  1. Praying that there is a solution for this issue! Hang in there!


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