Hudson had his GI appointment today, and while it wasn't a bad appointment, it certainly wasn't a great one. We discussed a lot of issues, the first being the concerning problem with needing to double his milk of magnesia dose. The GI doctor said that the medication isn't one that people usually build a tolerance to, so the fact that his normal dose isn't working anymore means something is going on. We talked about the crazy amounts of air in his intestines and stomach, and no one still really knows what it's from. This air causes a lot of discomfort for Hudson, as well as pressure on his G-button. The other important thing we discussed was his worsening reflux...after 2 fundos!!
So we came up with a plan of sorts with the GI doctor. First, he doubled Hudson's Prevacid dose, from 15 mg to 30 mg. We are going to try, very carefully and at a very tiny dose, the medication Periactin again. Hudson has reacted to this one in the past, but unfortunately, he
doesn't have many GI meds available to him anymore. He has either reacted to them in the past or he can't take them because of his heart or because of mito. If we don't see any improvement with these steps, the GI doctor brought up the idea of motility testing. He would have to refer us to another doctor who specializes in this type of testing. The problem with this testing though, is that it may provide more information, but doesn't really change treatment very much. So we would have to think long and hard about whether we'd want to put Hudson through that kind of testing.
We left the appointment feeling kind of defeated. I think Jake and I are realizing that, from a GI standpoint anyway, we've kind of come to the end of the easy fixes, Hudson is running out of meds to try and is slowly drifting over to the realm of more invasive options as his symptoms progress. Hudson capped off the day by not taking any formula by mouth today, needing to be tube fed all day, which likely means an illness coming on.
After having kind of a tough week with Hudson, and feeling a little down about it, I looked around tonight and realized that all 5 of us are here...safe, sound, and together. How blessed we truly are.
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About me
- Nicole
- I'm married to a very sweet and patient guy, Jake. He deals with all my neurotic tendencies and craziness. We have 3 kids, Aislin, who is 9, Jake, 6, and Hudson, 5. They are sweet, crazy, and loving all rolled into one. Hudson has Mitochondrial Disease, and this disease has changed our world forever, in some of the best and worst ways you can imagine. Everyday is a miracle.
Nikky, sorry to hear about Hudsons ASD :( just another issues you have to deal with, poor kiddo. I wanted add that Jack is having the very same issue. All his xrays (you can view the last one on his blog) lately are showing tons of air in his intestines, they are also a bit distended (but not his tummy) He blew through 2 g-tubes and now on our 3rd. He still leaks formula during his night feeds and has belly pain and nausea. You can read our last post but their thinking is its "high fructose" intolerance. Actually Lactose and bacterial overgrowth can also cause air to build in the GI too. But maybe theyve ruled all that out for H. The fructose testing was negative but his number was close to the positive...anyway we're going to treat him with antibiotics to see if it helps, also running stool cultures too. Just wanted say Im thinking about you tonight and your precious boy, praying his upcoming appts go well. BIG hugs-
ReplyDeleteHeidi & Jack.