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.

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!