Optimization, continued

So far, so good.  Well, it's been three months since we had the first brainwave optimization treatments, and we have only good things to report.  At the end of March we underwent 4 additional treatments just to "keep the ball rolling."  Isaac poops normally, and eats normally as well.  (Our normal is a little healthier than the average American diet, it should be said.).

I read more about brainwave optimization.  There is a book called Limitless You by Lee Gerdes and of course, it's set up so that the reader can barely help but think that everybody ought to get this done.  The explanation is that the slight electrical pulse going through various parts of your brain our caught with an electroencephalogram, and then played back for your brain (virtually immediately) at an audible level.  The idea is that your brain captures this playback, recognizes it as patterns of its output, and plays a game with itself which helps it achieve a balance.  It sounds like there is some sort of baseline brain balance signals that are "suggested" to the brain via soundwaves while it is playing the game of listening to itself function.

Some of the anecdotes in the book are nearly unbelievable.  I am still a little skeptical about the whole thing, but the more I hear about our family friend and the results that I have observed so far in Isaac really bend my perspective.  When I read about the brain activities in the brainwave optimization book, I can't help but think of the centering effects of yoga and slowing down, exercising, and so on.  Electronically stimulating this balance sounds a little too hokey--and most of all I am skeptical because of the lack of embracing this technology by any mainstream health care system--neither those interested in the physical nor the psychologically pathological.  But seeing positive results, similar to a yogic centering, in a 3 year old compels me to deduce that it is not merely a contemplative or meditative result of being still and slowing down for a couple hours at a time.

Look, we're just tickled that Isaac is doing well, growing and developing just great, and for the time being it is sort of nice to "forget" that he has this chronic condition.  He does still take his maintenance meds as earlier reported.  So he takes his sulfasalzine three times a day (liquid), and swallows his azathioprine each morning (and a folic acid pill as well).  But we're enjoying the good times now and hoping that these good times stretch out into forever!

brainwave optimization

Well, you won't believe what we are doing this month.  We are trying a brain state technologies series of treatments where a patient's head is hooked up to sensors and then sounds are played into the patient's ears which vary depending on the brain activity.  All of this is designed to help the brain sort of train and balance itself.  And, if you want my opinion on the matter, it seems at least a little dubious.

However, a good family friend who has had ALS for over 20 years has recently experienced some radical improvements using these treatments.  And my dear mother wants to help by covering the cost of these sessions, in hope of an improvement for Isaac.  And we of course would love improvement in Isaac's symptoms.  It is completely noninvasive--except for the wrench it throws at our daily routines during the week of sessions (twice daily, two hours each session).  No harm, and possibly a working treatment.  And really, it costs less than half of one of the two diagnostic colonoscopies Isaac has already had, and just a fraction of the treatments that are suggested next, which have unknown risks with young children and are given by injection every so often (I am speaking of Humira or Remicade).

Please allow me to give an update on Isaac's healing or not healing.  After the last round of not healed, Isaac has entered another cycle of somewhat healed, where his stools are solid or at least 5s and blood is not apparent.  As far as we can tell, this is a irregular periodic cycle.  We are still careful with his foods but allow in moderation most things as long as they aren't terribly processed.  We still want to experiment more with the SCD but we're also up against the butt of budgeting, so we've kind of held off on making big pantry shifts.  He seems to be doing pretty well on limited dairy and limited soy products. Although I have to say, he does seem to have an upset stomach more often, even if his bowels seem to be producing more healthy stools.

Basically, we have gotten out of the habit of our food and poop journals, and we need to get back in the swing of it.  Isaac is beginning to write more, so maybe we can share some responsibilities with him as far as logging some of the items.  We are still keeping up with all the prescribed meds, and we do seem to notice a difference with VSL.  To get him to take it, we started giving him just a half packet at a time, because if we use more than a half packet in any portion of anything, he notices it, but just a half-packet can be disguised by yogurt or a drink.

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.