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:

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.

writing about writing

Weblogs are a good way to share experience. As for IBD in our home, I am encouraged by readers who write, readers who only read, and other writers who don't even read. Lately we were included in a list of IBD blogs and websites. Also, I am continually reading about old patients, new patients, stories new and old, and anything else IBD in forums and in other places which list randomly 40 at a time on the right side of my blog....

I definitely recommend blogging for the journal aspect, for connecting with others in similar situations, and for helping others down the road. As you share your experience, it can really help someone else in a similar situation.

We are still weaning Isaac off of the prednisolone. And everything seems to be going just fine as it has been for a while....

Last week was Vacation Bible School at our church, and Isaac and his brother had a good time each day. Yesterday, they helped lead some of their songs during church, and how delightful it was to see little Isaac doing his body movements and gestures for the songs... Actually I had quite a moment, since one of their songs (How Great Thou Art) was one of my late grandmother's favorites. I am a bridge between her and them, and maybe it is all but impossible to fully relate the connection, but how delightful to see her progeny celebrating the same song that moved her decades ago.