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.

Chewing the Fat

This week I just need to direct you to Bonnie's we talk dinosaur blog. It talks about Isaac, like usual, but specifically about his weight, which is what is on our minds these days. He is still a healthy weight, but he hasn't gained weight really, in the past 10 months.

We are in Louisiana now, visiting grandparents and Aunt Liz before the school year picks up again in Houston. Isaac's activities today included toy time, watching brother with his baking soda and vinegar rocket, some computer games at pbskids.org, book time, some movie time with Jake and the Neverland Pirates, bubbles and water fun outside, and falling asleep in Aunt Liz's bed.

steroid free again again

And now we enter that phase of hope that everything will remain as it is or better yet, get better. Other than Isaac's sulfasalazine and azathioprine (and folic acid and probiotics), he and his colon are living a healthy life.

Some of our latest exploits can be found on Bonnie's we talk dinosaur blog. What we're looking forward to this weekend is our first boys-only camping trip into the wilderness of a yet-to-be-determined Texas state park.

One thing I want to mention as a sort of follow up to our last post is that when everything is going well with us, we really appreciate it. Our prayers and thoughts remain with those with IBD who are suffering, that each sufferer finds remission or at least some relief or peace soon!

Also, for those of you just stumbling on some IBD blogs, I point you to the right of my blogspot, where you can find other IBD stories which may interest you.

chronic amplification

Having a young tot with a chronic disease seems to amplify both the good and the bad. We probably appreciate Isaac's health and milestones more than we might otherwise, but when something new and scary happens we're also all the more concerned. The concern of this week involves what we are going to call a small blood blister on his butt. And of course, we were initally bombarded with all the feelings of fistulae, disease advancement, undiagnosable problems, surgery. But then we took a step back, took some magic breaths, googled for a while, and decided not to be so worried about it for now. Slowing down the alarm bells reminds us to take it easy and of course report it to the doctor. It's not like all of the sudden Isaac is having pain or has any indications that anything is wrong. Of course it's good to notice change, so we'll keep an eye on things and see how it goes.

Everything is going great as far as poop goes. We are just ready to finish up with this long steroid weaning. And for that the doctor is dragging his feet a little to make sure the azathioprine (Imuran) levels are at a therapeutic level for a human Isaac's size. His prednisolone dose is small, but it's still there. And meanwhile he's growing an excess of fuzzy body and facial hair!

And that reminds me, we have tended to downgrade our strict attentiveness to soy. Since Isaac got this last flare under control he has been exposed to definite traces-of-soy foods without any noticable effect. When we get off the steroids completely we will surely play it safe, especially for the first months, but we might be more skeptical than before that it is soy and soy alone that triggers the flare-up. I think the model in our minds is something more like: Isaac's guts have some imbalance, and any little thing is bound to trigger the flare-up at that time. And maybe it was traces of soy, but other times soy might be fine for him, and it might just as well been other grains, dairy, meat, or anything really.