In spite of the recent success, I am having a difficult time embracing the brainwave optimization treatments as the cause of Isaac's current well-being. But facts are fact, and reporting them is my pleasure, because we had a doctor's appointment yesterday where all indications showed that Isaac is in remission they told us. Healthy blood tests, healthy stats, no evident bowel problems. We also heard those words that everybody connected to somebody with a chronic illness loves to hear: "We don't know how to explain it, but..."
Showing posts with label UC toddler. Show all posts
Showing posts with label UC toddler. Show all posts
Tuesday, April 10, 2012
Saturday, May 21, 2011
Isaac these days
Since I'm changing the website photo I thought I'd put up the old one, plus a bonus photo of little Isaac. He's turning 3 in 8 days!
The med situation is that we are tapering down the steroids (the rate will depend on analysis of his blood--to see how much the Imuran is affecting him by now). Isaac's response to steroids wasn't as responsive this time as before--as far as his mood changes and "wiredness". About affecting his bowels, let us give the poop scoop below. We haven't started the VSL#3s yet but it's in the plans. Since he's doing alright, we might just wait for another relapse or hint of relapse before we try that....
Poop scoop: All better as far as poop goes. We're seeing nice 3s and 4s every day or every other day, and there seems to be no other indication of inflammation as far as we can tell....
Monday, May 9, 2011
shocked in spite of myself
We are continuing meds, and I have to repeat what I mentioned to Bonnie the other day, which is that I'm really surprised--shocked even--that our entire response to Isaac's condition is going on the way it is. What I mean by this, mainly, is that I am generally so pro-natural if not anti-pharmaceutical when it comes to treatments. Yet here we are finishing our fourth week of our second (or third--if you count that one isolated week) round of steroids since October, and Isaac is now taking a second drug--this one suppresses the body's immune response.
What I wish? I think we could effectively test out a few treatments which involve mostly diet and probiotics. Actually, by doing this alongside of what the doctor orders, I think we have found some good information about some of what affects Isaac. We have thought, from time to time, that we're onto something with probiotics we give him, but we don't have good evidence of that. We are going to get some strong concentrated probiotics to help alter Isaac's natural intestinal microbiome, but as he seems to be in a more "healthier" stage now, it may only help loosely point to what is/isn't effective. There are also many things out there that our doctor is shy about. Like probiotic enemas, and bacteriotherapy (an infusion of a donor's healthy stool to help adjust the culture of Isaac's gut).
So why is our doctor about these treatments and not shy about pushing expensive carcinogenic drugs to our two year old, talking about them as a pathway to probable surgery? One reason, of course, is the trend of research and science behind health care. A lot of research gets funded for things that make money. And simultaneously, the trends of health care point to miracle pills or substances which can treat symptoms and/or fix conditions as opposed to more mysterious treatments which contain components which are difficult to isolate and control. And that's especially true if the treatment does nothing more than encourage a body's system to do its job even though modern medicine has deemed the body's system pathological. Then there's the actual money factor, which isn't just about the science of medicine, but the actual money driven aspect of what pays and what doesn't. These expensive medicines Isaac takes help, in a twisted short-term way, to drive our economy. A cheap fecal transplant only helps the economy in the long run. I really hate that analysis, but that's our health care system for you.
I got a good private response from a reader about a situation similar to ours, where this family's toddler was diagnosed at a similar time. Their response to the diagnosis has leaned toward the nonpharmeceutical. One difference that Bonnie points out is that Isaac's case seems more moderate-severe whereas the reader's child's situation may be more mild-moderate, but in both cases we have diarrhea and blood. And in both cases, honestly, it seems like the outcome has been about the same. Some improvement, but some "relapse" in our case with drugs, and the same to be said for the nonpharmaceutical approach. So I ask myself, what are we doing exposing Isaac to months and months of steroids, for the same results we can get by going with probiotics and dietary changes?!
Of course you may anticipate the answer. We don't want Isaac to miss out on growth spurts. we don't want scar tissue to develop in his guts which may lead to surgery sooner rather than later. And we don't know--maybe without drugs, he would have needed surgery by now.
Anyway, this is my struggle. We'll probably wrestle some more, see how the VSL#3 goes, continue little by little finding more out with our dietary/stool/symptom diary, and who knows. I would still be thrilled to work with a scientist/doctor who wants to investigate this bacteriotherapy (I realize now that I have yet to write a good entry for the fecal transplant).
The poop scoop: Isaac has continued to poop pretty well, going once a day or once in two days. His last stool was a 4-5, but he also had an ideal 3-4 the time before that.
What I wish? I think we could effectively test out a few treatments which involve mostly diet and probiotics. Actually, by doing this alongside of what the doctor orders, I think we have found some good information about some of what affects Isaac. We have thought, from time to time, that we're onto something with probiotics we give him, but we don't have good evidence of that. We are going to get some strong concentrated probiotics to help alter Isaac's natural intestinal microbiome, but as he seems to be in a more "healthier" stage now, it may only help loosely point to what is/isn't effective. There are also many things out there that our doctor is shy about. Like probiotic enemas, and bacteriotherapy (an infusion of a donor's healthy stool to help adjust the culture of Isaac's gut).
So why is our doctor about these treatments and not shy about pushing expensive carcinogenic drugs to our two year old, talking about them as a pathway to probable surgery? One reason, of course, is the trend of research and science behind health care. A lot of research gets funded for things that make money. And simultaneously, the trends of health care point to miracle pills or substances which can treat symptoms and/or fix conditions as opposed to more mysterious treatments which contain components which are difficult to isolate and control. And that's especially true if the treatment does nothing more than encourage a body's system to do its job even though modern medicine has deemed the body's system pathological. Then there's the actual money factor, which isn't just about the science of medicine, but the actual money driven aspect of what pays and what doesn't. These expensive medicines Isaac takes help, in a twisted short-term way, to drive our economy. A cheap fecal transplant only helps the economy in the long run. I really hate that analysis, but that's our health care system for you.
I got a good private response from a reader about a situation similar to ours, where this family's toddler was diagnosed at a similar time. Their response to the diagnosis has leaned toward the nonpharmeceutical. One difference that Bonnie points out is that Isaac's case seems more moderate-severe whereas the reader's child's situation may be more mild-moderate, but in both cases we have diarrhea and blood. And in both cases, honestly, it seems like the outcome has been about the same. Some improvement, but some "relapse" in our case with drugs, and the same to be said for the nonpharmaceutical approach. So I ask myself, what are we doing exposing Isaac to months and months of steroids, for the same results we can get by going with probiotics and dietary changes?!
Of course you may anticipate the answer. We don't want Isaac to miss out on growth spurts. we don't want scar tissue to develop in his guts which may lead to surgery sooner rather than later. And we don't know--maybe without drugs, he would have needed surgery by now.
Anyway, this is my struggle. We'll probably wrestle some more, see how the VSL#3 goes, continue little by little finding more out with our dietary/stool/symptom diary, and who knows. I would still be thrilled to work with a scientist/doctor who wants to investigate this bacteriotherapy (I realize now that I have yet to write a good entry for the fecal transplant).
The poop scoop: Isaac has continued to poop pretty well, going once a day or once in two days. His last stool was a 4-5, but he also had an ideal 3-4 the time before that.
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