In 2010 we got a diagnosis of ulcerative colitis for our son Isaac who was then 27 months old. For a year and a half we had been concerned about his persistent soft stools. Now that we're going down the road of living with IBD in our house, we want to be able to share our story, connect with similar families or individuals, and increase our awareness of the experience of others.

Some of our related interests are diet, kids and families with IBD, and discussing and sharing experiences.

Wednesday, July 30, 2014

2014 Summer update

How happy am I to see that we have gone another year without any major updates!  Sometimes no news is good news.

Well, we did have some incidence of diarrhea toward the end of the school year where it looked like a flare-up might have been rearing up, but we are putting it down to a regular sickness.  It was enough for us to get paperwork done with our school now that Isaac was in Kindergarten, so that if he were to miss a number of school days, or if the school needs to follow specific instructions, that the ball is rolling to make sure everything is in place.

Now, we await first grade, which will start for Isaac next month!  It is easy to say there isn't a full and complete healing, because every now and again we must pay attention to Isaac's poop.  Sometimes he has a persistent stomach ache.  But all in all we are feeling good about Isaac's health, including bowel health.

After last year we decided not to go forward with a scope.  In fact we have stopped medication altogether.  That has come from going through a round of biometric scanning with a hand cradle which is believed in by some of our family.  I don't have anything good to say about it, except that, after that, we administered some homeopathic drops to Isaac before some time before taking him completely off all his medicines, and we haven't really had to look back.

We are also experiencing some various insurance transitions which I admit does affect health care decisions.  Our game plan if we get hit hard by another flare-up is to sit it out unless it gets so bad that we want to go back to the medicines we were on--then hopefully get back to that point without a worse result.  It's not that solid of a gameplan because it could get much worse before it gets better, but while things are good we will ride this wave.

As more and more comes out about the gut biome and treatments of microbial balance we look optimistically for advancement in that area, that may help Isaac later in his childhood if needed.

Tuesday, June 4, 2013

2013 Summer update

Well, remission has become more relative.  Our doctor noticed some inflammation markers, and even though Isaac's poop is healthy and he seems to be doing really well, there was an increased level of concern and the doctor also wanted to do another colonoscopy.  Since about February we have seen the occasional pinkish smear regarding toilet tissue that means for us that there is some blood and inflammation going on.  Since Isaac seems to be doing so well in every way we are kind of taking a hands-off approach and letting time pass to see how his body responds.  He is still taking his azathioprine (Imuran) and sulfasalazine.

Since our last post we actually haven't done any brainwave treatments--so over 9 months since we did that.  I was recently thinking that we needed to get back to that, and I think we would before we go to any higher level interventions.  But admittedly monetary costs have become more of an issue over the past year.  Rather than get on my soapbox about health insurance and politics and my family's situation, let me just leave it at that.

I had a sudden change of perspective regarding the brainwave treatments.  For the past year and a half I was really surprised at how immediate and effective and lasting the treatments seemed to be.  But I was reminded recently that it was also just about exactly six months after we started the Imuran that this dramatic turnaround occurred.  And I got the report recently that another young boy had a similar turnaround this year, after adding the Imuran medication--and also happened just about exactly six months after he started it.  The other little boy didn't have brainwave optimization treatment, so it pointed me to what is much more believable to me--that the Imuran most likely contributed to the positive effects which we were attributing to the brainwave treatments.  I will leave room that the brainwave treatments acted like a catalyst because we really noticed an immediate effect when we started the brainwave treatments--but I'm feeling more now that it probably just helped along the natural process of the body's reaction to the drug (helping the brain's/body's natural process is all brainwave optimization claims to do anyway really).

Isaac's poops are almost always a 3 on the Bristol stool chart. There are no indications of pain or discomfort these days.  Physical, emotional, and other health seems to be on track and all signs point positive.  I am hoping we can continue like this for some time and maybe find out more about Isaac's bowel specifics and perhaps some upcoming finds in microbiology that help us better understand some causes of colitis. Meanwhile, he loves his dinosaurs, the Octonauts, and LEGO and K'nex, and playing outside.  He also loves reading books together and is ready for Kindergarten in the fall!  My how time flies!

Tuesday, August 7, 2012

Maintaining Remission

We are awaiting our latest results, but things look good.  A couple weeks ago we all got sick with a bug that caused diarrhea and/or vomiting, and some flu-like symptoms that passed in about a day.  We were concerned, of course, about Isaac, and his diarrhea seemed to be more persistent than the rest of us who cleared up after a couple days.  But finally his poops got better and we are again back to normal.  No blood, and now it's been over 6 months!

Isaac is "listening to his brain" again today and every few months we will probably continue with the brainwave optimization treatments.  It involves four treatments and it costs $600.  We moved across town and now live very close to the place where Isaac goes for this, so it is convenient now to do one two-hour treatment a day for four days.

Wednesday, May 16, 2012

health appreciation!

We are appreciating this remission time whole-heartedly.  Every now and again will get a stinky poo that will remind us of UC, or we see a looser stool, and we'll get a little nervous.  But so far so good.  No blood or complaints, and good everything.

We are continuing with the sulfasalazine and azathioprine.  I have to say that our dietary modifications are nothing special other than our regular trying to eat healthily.

Way to go, Isaac!
easter eve

painting with brother and sister

Monday, April 30, 2012

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!

Tuesday, April 10, 2012

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..."

Friday, March 30, 2012

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: