Silas - Late Spring & Summer 2012

After our many failed attempts to find a medication or other treatment that would relieve Silas’ symptoms, we went back to see our GI here in Alabama.  We had not seen him since last August – prior to our trip to SC.

I brought up how concerned I was about Silas being malnourished for so long (as determined by his pre-albumin levels).  He said we could put in an NG tube (that goes through the nose and into the stomach) to see if Silas still tolerated Elecare.  Elecare is the one thing that Silas always did really well on (if he wasn’t eating anything else with it).  The problem was that he refused to drink it any more.  It smells bad and tastes even worse.  When he quit drinking it four years ago, he ended up in the hospital for 2 ½ weeks.

I wasn’t surprised that the GI doctor mentioned some type of feeding tube.  He’d never mentioned it before (other than having it in the hospital), but it’s something I always knew was a strong possibility.  What really caught me off guard is that he wanted to put in an NG tube first.  Silas had an NG tube during that 2 ½ week hospital stay.  It was the single most horrific experience of our lives.  They take this long tube and shove it down your nose – all while you are awake!  I’ve mentioned before that it took FOUR adults to hold him down and a FIFTH to put in the tube – and it had to be reinserted multiple times.  I had promised myself that we would never do that again.

The second thing that that surprised me was that he said we would put Silas on continuous feeds.  This entails Silas either being hooked to a pole or wearing a backpack (that holds the feeding pump) almost 24/7.  I definitely wasn’t expecting this.  However, with the amount of inflammation and problems in his digestive system, this would provide the best chance of him absorbing the most nutrients.

I also asked the GI about other medicine options.  I knew there were supposed to be options that were stronger than the anti-inflammatories he’d been taking but less problematic than systemic steroids.  He said we could try Entocort.  It’s a steroid, but it stays in the digestive system.  The GI said it’s only recently been out long enough for a generic to come out and people to actually be able to afford it.

So, the plan was to first see if Silas would drink vanilla flavored Elecare (slightly flavored nastiness).  Second, try the Entocort.  Third, consider NG tube.

Well, he refused to drink the Vanilla Elecare, so we had a talk.  (He’s really good about things sometimes if you try to explain it to him.)  I told him he had a choice (not meanly but matter-of-factly).  He could learn to drink the Elecare, or we could put in a tube that put it into his tummy for him.  We’ve met someone with a G-tube and backpack before, so he knew what I was talking about.  We looked at pictures of tubes on the Internet.  I told him to think about it.  Later that day, he said, “Mommy, I think I would rather have a tube.”  Sigh.  Who could blame him?  I don’t think I could drink large amounts of it every day either.

We moved on to the Entocort.  Second day he took it, he spiked a fever.  This is what he does when he’s reacting to something.  Found out it contains sucrose – which he’s never done well with.  Since this was our last hope before a tube, I wasn’t giving up easily.  We tried again, this time we started with one (he was supposed to take 3 each morning), then worked our way to two, and finally back to three.  First day on three, he ran a fever again.  We went back to two.  We did make it on two for three weeks (which is the amount of time they say it can take to kick in).  However, it caused all kinds of issues, and we had to quit at that point.

After talking to the nurse, we were scheduled to drop by the GI office and then be admitted to the hospital to get the NG tube.

Janel