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..."

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:

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.

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.

healing or not healing....

Well, without steroids we did notice natural healing, but the next month we again saw runny stools and blood evident...  There isn't a lot of blood, so we and the doctor have been waiting to see what happens.  Isaac's health otherwise is great.

At our doctor's appointment yesterday we scheduled another colonoscopy and talked about where this is going.  Our doctor is interested in Remicade or Humira and wants us to think about that.  They also want to double check on the diseased parts to re-rule out Crohn's (in thinking ahead about a colectomy).

My gut reaction is to hold off on everything so as to not accelerate towards surgery.  It seems like Isaac is thriving well in spite of the gut condition, and more time allows us to check allergies and other food reactions and maybe get a better grasp of the situation and be able to handle it without the exotic medications or removing bowels.  Also, it allows time for more treatments to develop.

http://getbetterhealth.com/fecal-transplants-getting-to-the-bottom-of-the-matter/2008.11.25

http://www.ulcerativecolitisforum.com/showthread.php?237-Offering-in-patient-fecal-transplants

Healing Without Steroids

Without steroids, this is what we experienced. The same number of days of bloody stool, which has seemed to resolve itself. For the past few weeks we have been bloodless, with poops improving in consistency until now, where everything is as good as it's been, which are nice healthy 2s and 3s (by Bristol) once everyday or every other day. What we observed is practically the same as our last run of steroids, where we had 17 days of bloody stool. This time it was 18 days without prednisolone, except for a few traces of blood we observed a couple days into the "bloodless days". Overall, we were really tickled that he healed from this flare-up, and so quickly.

Apart from the natural healing of a healthy human body, and from divine intervention, for the record, we can also record the following:

We again had a enema treatment early into the bloody stools (which didn't really seem to be so effective, but who knows).
We didn't really get to any dietary changes we were talking about, with the SCD or other diet changes (our normal diet these days includes some meat and dairy, almost completely soy free, and mostly all healthy natural and homemade foods), except that we had a low-residue diet during the bloody stool phase.
We did start a daily regimen of VSL#3, a high potency probiotic. Isaac had finally gained some weight and we increased our doses of sulfasalazine and azathioprine. We discounted this from his healing because those drugs by themselves don't seem to bring about healing according to the studies. But hopefully we have the right dose to maintain remission for a long long time. Isaac also got a fresh run of L-Glutamine.

We are really happy. We had a colonoscopy scheduled and everything. The doctor was fine with being hopeful and patient to see if he came around on his own, and when we started to see improvement we went with the flow and canceled the colonoscopy. One downside is that the VSL has a nasty taste and it's difficult to get it into Isaac sometimes. We hide it in ice cream and yogurt and drinks, but it's tough.

the return of the red toilet water

And, now we're back at it. At the beginning of this month, we again saw blood showing up in Isaac's poop. Of course, at first, we hoped that it was just a quick bloogie, but no, it persisted for days and has continued to persist.

At this juncture, we had already pre-agreed that when it came to blood again we would avoid steroids and see what the natural healing process is like. Assisted by natural means other than pharmaceuticals. Now, we'll go ahead and continue with the sulfasalazine and the azathioprine. And actually, we're even going to go strong with the potent probiotics sold as VSL#3. And we will continue down the oral with diet modifications in hopes of effecting change.

Our hope here is to see what the natural healing process is like. If Isaac is going to have semiannual flare-ups, but if his own body heals within a month, then we will be no worse off than we have been the past year with medical interventions, but without the side-effects and extra risks. The long term risk of chronic inflammation is the scar tissue built up over time, but right now we're weighing that with colectomy. And our appointment to discuss Remicade and surgery is actually next week, so it is a little premature for me to tell you what we decide, but this is what we're thinking now.

And so far so good, with the new probiotic regimen. We started Tuesday, and already are having a hard time finding blood in the poops today. But we're patient with our excitement these days. Also on the agenda is the SCD. Instead of starting all-in, we are planning to cut one item at a time to see if it helps, but we'll have to see, because if his bloody stools do in fact persist, we will probably go all-in anyway. All-in means no more starch or gluten and so on. And it would be quite a drastic change from our current nearly vegan but no soy diet, but we'll see. I'll keep blogging about the developments of our adaptive diet.

Fortunately, Isaac has been growing in height and weight, and other than his extra toilet time and some stomachaches on the onset of the return of the red toilet water, he is healthy and robust and a delightful little man. Right now he is watching Tangled and his favorite animals at the zoo have been rhinos lately.