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!

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:

steroid free again again

And now we enter that phase of hope that everything will remain as it is or better yet, get better. Other than Isaac's sulfasalazine and azathioprine (and folic acid and probiotics), he and his colon are living a healthy life.

Some of our latest exploits can be found on Bonnie's we talk dinosaur blog. What we're looking forward to this weekend is our first boys-only camping trip into the wilderness of a yet-to-be-determined Texas state park.

One thing I want to mention as a sort of follow up to our last post is that when everything is going well with us, we really appreciate it. Our prayers and thoughts remain with those with IBD who are suffering, that each sufferer finds remission or at least some relief or peace soon!

Also, for those of you just stumbling on some IBD blogs, I point you to the right of my blogspot, where you can find other IBD stories which may interest you.

chronic amplification

Having a young tot with a chronic disease seems to amplify both the good and the bad. We probably appreciate Isaac's health and milestones more than we might otherwise, but when something new and scary happens we're also all the more concerned. The concern of this week involves what we are going to call a small blood blister on his butt. And of course, we were initally bombarded with all the feelings of fistulae, disease advancement, undiagnosable problems, surgery. But then we took a step back, took some magic breaths, googled for a while, and decided not to be so worried about it for now. Slowing down the alarm bells reminds us to take it easy and of course report it to the doctor. It's not like all of the sudden Isaac is having pain or has any indications that anything is wrong. Of course it's good to notice change, so we'll keep an eye on things and see how it goes.

Everything is going great as far as poop goes. We are just ready to finish up with this long steroid weaning. And for that the doctor is dragging his feet a little to make sure the azathioprine (Imuran) levels are at a therapeutic level for a human Isaac's size. His prednisolone dose is small, but it's still there. And meanwhile he's growing an excess of fuzzy body and facial hair!

And that reminds me, we have tended to downgrade our strict attentiveness to soy. Since Isaac got this last flare under control he has been exposed to definite traces-of-soy foods without any noticable effect. When we get off the steroids completely we will surely play it safe, especially for the first months, but we might be more skeptical than before that it is soy and soy alone that triggers the flare-up. I think the model in our minds is something more like: Isaac's guts have some imbalance, and any little thing is bound to trigger the flare-up at that time. And maybe it was traces of soy, but other times soy might be fine for him, and it might just as well been other grains, dairy, meat, or anything really.

Isaac and Imuran, so far so good

Isaac continues to do well. His latest bloodwork showed lower 6-TG levels than his doc wants to see, so we are slightly increasing his consumption of Azathioprine (Imuran). Instead of every other day doses he is now getting 5 doses a week. We continue to taper his prednisolone. We have another doctor's appointment tomorrow.

6-TG is a derivative of thiopurine. There is a lot to learn. If you're interested, you can start with this article which deals specifically with IBD. In that article, you, like me, might get a little excited about giving such a drug to a young'un. But having said that, our doctor understands and is concerned about the risks and we are monitoring Isaac closely while he is introduced to this drug (for the first several months) to make sure his body tolerates it just fine.

The poop scoop: We remain in a phase of normal poops.