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!

Remission, it's official!

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..."

Positive Results Update

We are fortunate enough to have had a good stretch lately.  Good bowel movements with no blood, apparently good development altogether, positive test results.  We cannot know to what extent the brainwave optimization has contributed, but we are fortunate enough to be able to repeat a few sessions soon in order to "keep the momentum" of these positive changes.

Isaac has continued to grow and develop well.  We have continued with the pharmaceuticals--azathioprine and the 3x daily drinks of sulfasalazine.  Because these are drugs designed for long term results, we will likely wait some extended time (one year?) with positive results before we consider eliminating those substances.

I am still skeptical, interestingly, of these brainwave optimization treatments.  But I will say that lately it has been as good as it's been for Isaac, and we also aren't being so selective with his food as to watch for any soy product.  He eats like the rest of us now, which is pretty healthy and low on processed foods anyway.

Here are some recent photos when we went to see the grandparents in Louisiana:

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.

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....

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.

the latest latest

Our doctor wants to

a) increase the sulfasalazine
b) start Imuran
c) hit the steroids

And of course we're torn. We want to do whatever it takes for Isaac to be at his optimum health in his condition, but we also want to do the least drastic thing. Bonnie is more at peace with the meds. I am less.

Two more stools today with blood present. We need to do something. Something I wanted to check is why not try another 5-ASA drug other than sulfasalazine. We also still have the SCD to try out instead of our vegan efforts. We also have a battery of other things to try, but we don't want to waste too much time trying things that won't work. And that's exactly the doctor's perspective I think.

Here is a graphic so you can see our stool report since we started taking careful records in February. Sorry it's so non viewer friendly. The lightest are caution #6 stools. The bright red are #7 stools, and the dark red cells indicate blood.

2/24	5.5
	n/a
	3,6.5
	3,4
	n/a
	3,4
	n/a
	3
	n/a
	n/a
	3,4
	4
3/8	4,7
	7
	5
	5,6,7
	4,5
	n/a
	n/a
	3,4
	3
	4,5,6
	5
	n/a
	3,4 5,6
	5
3/22	6,7
	3,4 5,6
	3,6
	4
	4,6 4,5
	n/a
	3,5
	3,5
	n/a
	3,5
4/1	6b 6b 6b
	4,6b
	6,7 5
	5,6 5,6b
	7b
	6b
	6b
	3,6
	6,7 6,7
	4,6(b)
	7b 6b

chronic illness and love and other drugs

We watched Love and Other Drugs. While the content itself is a world away from our experience with Isaac, it is worth mentioning that the character living with a chronic disease hit home in a big way thinking about Isaac and his life ahead of him. In the movie, the character with Parkinson's has done a lot of self-work coming to terms with her conditions, but her love interest has to start at the beginning, which is where my wife and I started as well, about seven months ago or so.

At the beginning we both hope and fear for a diagnosis. Of course we hope the diagnosis is something curable and treatable, even while it looks like all signs point otherwise. But also, before a good diagnosis is made, we just want to know something. Simultaneously, we don't want to hear a diagnosis that means a lifetime of attention, surgery, or anything drastic.

Maybe that's why the first stage after that is some sort of rosy hope stage where we are sure that we can find a way to beat the disease. We know that if we just eat the right thing or can make the right adjustment then everything will be okay, that even everything will be as we otherwise expected, save for the adjustments. In the movie, as soon as Jamie (the love interest) realizes the reality of Maggie's Parkinson's symptoms, he is off like a shot to find all the latest treatments and figure out just how they are going to solve the problem. It reminds me of me, and diet and probiotics, with Isaac.

But there is this stage of acceptance that I am easing into, and it is what follows the fervor of the newly-diagnosed. One sort of finds a peace with the reality of the condition, and without losing hope and doing whatever we can to treat and cure, we also accept that this condition affects us and will do so for a long long time if not forever. The movie does a good job of showing Maggie's inspiring balance she has found, and Jamie's struggle as to whether or not he can make it to that acceptance phase.

Of course there are other themes in the movie worth mentioning. Like the pharmaceutical racket, the disillusionment of doctors, and the eruption of the US health insurance system.

life after roids

Well, we're still in the "weaning off" stage of discontinuing six weeks of full dose prednisolone for Isaac's UC. For a two and a half year old, parents are bound to experience mood changes and independence--a particular vigor of life which often leaves parents wringing their hands for the "terrible twos" to pass. Well, especially the last few weeks left us wringing our hands with little Isaac.

The best anecdote was when Bonnie listed off half a dozen bizarre scenarios which included the slinging of toilet water, climbing on top of the TV, jumping off the couch, bouncing everywhere like a bunny, getting into this or getting into that. By and large, it wasn't anything different from any run of the mill experience with a two year old. Then, she clarified, however, at the end of the list, that it was merely the antics of one day. Many of you who have had kids can understand, I know. Just string all of those such days together with no naps for a few weeks and then I think you've got it.

Now that we've cut back on the steroids, he is napping again and he seems to have his regular self back, already. You know from my writing that I was a little anxious about the steroids, so I am relieved to see that he seems to be getting back to normal just fine. Although I do still await what the next few weeks will bring, and of course I hope he has no long-term ill effects.

Bowel-wise, we're all good. From our previous experience, it's going to be hard to convince me that the steroids are necessary. The science of it goes like this. At our last check up, when we were given the clear to reduce the steroid dosage, they took no blood work. The results they gave us that day were from the previous bloodwork three weeks ago. In that time, we saw improvement, but now we have no baseline for what "good" is really like. We will see the doctor in another month (six weeks from the last appointment) though so hopefully Isaac will still be doing just fine. I am pretty optimistic about the probiotics, which seem to be getting the best and surest results. Although, like I've written about before--it's so hard to tell what is doing what since we're doing a lot all at once.

This isn't the first time I've written this, but we suspect cow's milk triggers reactions--less than soy but greater than any other thing we've identified as far as we can tell.

I'm pretty comfortable with our diet and Isaac. We eat omnivorously on Wednesdays, vegetarian on days that begin with T, and vegan on the other days.

We have wanted to get more involved with families around Houston who cope with IBD, but so far we haven't done any of that. Perhaps as we get settled into our house and this side of town we'll be more on top of social networking. Our goal at this point is to keep on top of intake and output and register any fluctations, keep up on the anti-inflammatory medicine (hopefully get him switched to non-antibacterial pills instead of the antibacterial liquid form), stay faithful with the probiotics and see if we can't keep his condition stable for a long a time as possible. Being involved with other families with similar goals would probably help.

UC

Diagnosis: ulcerative colitis. Did you know its incidence is around 3 in one million for his age group? So he is one of the about 15 kiddos here in Houston with similar conditions. Actually, they have a center here for families with kids with IBD. That's nice. I think we'll get involved.

The doctor is hopeful, and so are we, that he will respond positively to an anti-inflammatory medication he will presumably take for the rest of his life. We'll keep you posted.