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, 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:

Sunday, January 29, 2012

Brainwave Optimization Report 1

This was the report by Bonnie:

Deep Breath In

A friendly hug outside Whole Foods
To say the least, I was conflicted about starting this last week.  Isaac underwent 10 sessions of brainwave optimization.  That in itself was exciting.  The office where we got the treatments done was clear on the other side of town.  The treatments were each 2 hours long and we were doing 2 a day with a 2 hour break in between.  Those were the things I wasn't looking forward to.  Deep breath in.

I was looking forward to Isaac getting the treatments and excited about the possibilities it held for him.  I wasn't looking forward to a 40 minute drive each morning, waiting in a waiting room for 4 hours total with my other two kids, and then driving back 40 minutes to get home.  But we (I) pulled it all together, gritted our (my) teeth, and "happily" went along with it.  Deep breath in.

In our van
Now, I won't drag it out.  I'll let you know right now that after the first 2 hours in the waiting room, I was politely told that my kids were too loud for this office's reception area and that I would have to find some place else to wait.  A really deep breath in.  Now, I won't deny that my kids made noise while we were there.  They're kids.  Duh.  But I will defend them and say that they were well behaved and getting along and making the best of being in a waiting area that definitely wasn't made with a single child in mind.  So where did we go from here?  Our van.  Yep, we spent 4 hours each day waiting in our car for Isaac to get his treatments.  Deep breath in...

On the flip-side, Isaac did really great.  He had a good time and behaved himself just fine while having the treatments done.  It's too soon to tell how well it will work for his bowels, but we can already tell a difference in his concentration, speech, and sleeping behaviors.  And chances are that we will see some results in the next 1 to 6 weeks.  

What do you think it is?
All things considered, it was a good week.  Our lunch breaks were spent at the dinosaur museum and Whole Foods.  We got to dig for dinosaurs and learn about malacology.  We played at the park and watched movies on the laptop.  We survived.  Deep breath out.

Tuesday, January 17, 2012

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.