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

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.

Roadtrips & Snack Plans

First, the poop scoop:

Isaac's stool has continued to be pass inspection since our last post. These are not ideal stools, but no blood, and we're continuing to be hopeful that we are on the cusp of a good remission. Yesterday he had some snacks with soy, and we didn't have any problems last night. He even passed a #6 stool this morning that didn't seem problematic, so that seemed good.

Also, we have ventured on a roadtrip and a weekend "away", and we are pleased to report that it was a success. We have a new procedure on the books. And I don't mean medical procedure, good heavens, but rather, a

Procedure for Social Snacking

When a group of ten kiddos get Easter cupcakes, for example, and you don't know if the ingredients pass stringent criteria, and your little boy is part of that group, it is really difficult to say, "No, you can't have one," unless you have a plan. And so now our plan is going to include some sort of snack bag which we'll have with us at all time so that we can make a suitable substitute snack that Isaac will enjoy will everybody else is enjoying an Easter cupcake.