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!
Showing posts with label IBD. Show all posts
Showing posts with label IBD. Show all posts
Monday, April 30, 2012
Sunday, January 29, 2012
Brainwave Optimization Report 1
This was the report by Bonnie:
Deep Breath In
 |
| A friendly hug outside Whole Foods |
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.
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| 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.
Saturday, May 21, 2011
Isaac these days
Since I'm changing the website photo I thought I'd put up the old one, plus a bonus photo of little Isaac. He's turning 3 in 8 days!
The med situation is that we are tapering down the steroids (the rate will depend on analysis of his blood--to see how much the Imuran is affecting him by now). Isaac's response to steroids wasn't as responsive this time as before--as far as his mood changes and "wiredness". About affecting his bowels, let us give the poop scoop below. We haven't started the VSL#3s yet but it's in the plans. Since he's doing alright, we might just wait for another relapse or hint of relapse before we try that....
Poop scoop: All better as far as poop goes. We're seeing nice 3s and 4s every day or every other day, and there seems to be no other indication of inflammation as far as we can tell....
Saturday, April 2, 2011
The S word, and I Guess I Hope It's the Honey Oaties
The last few days:
On Thursday we saw it, the undeniable bloogie in the tail end of Isaac's poop. What is a bloogie? A little red mucousy ribbon of blood found usually toward the end of a colitis poo. Of course we like to not see blood. On the other hand, we don't run to the hospital first thing when we see it either. As it were, the next day was a scheduled doctor's appointment (we generally have one every 4-6 weeks at this point), so we knew we could have a chat about it and see what was going on blood-wise.
For the doctor's visit, we heard the I word, Imuran, and we heard the S word, surgery. We've talked about an advanced med schedule for when what doesn't work and so on, but not for a while, because Isaac has been doing good for the most part. Reality sort of smacked us in the face a little, thinking again about the prospect that, yes, this might result in surgery someday. Stoma, colectomy, resection. Until last year these are words we couldn't precisely define. There are some that I still need to read up on. But you know, many of you who are reading this, that the reality of IBD sometimes involves these--that's just how it is.
Well, of course we want to avoid drastic treatments, or at least prolong the time before them, as long as we can keep Isaac in a healthy and beneficial state otherwise. Our approach, which you could call extra-medical if you want, because it sort of skirts and/or supplements the doctor's orders, is diet based and microbial based. We assert that while Isaac has some IBD genes and perhaps would have developed UC in any case, that it was triggered by early antibiotics, a meat-heavy diet early, and an intolerance/response to soy which may be a result of the above or may be incidental. We assert that his inflamed colon becomes so as a direct result of certain foods he eats or doesn't eat and/or his body's response to them, which in large part, we believe, has to do with having an optimum bowel environment for bowel microbes.
We have found, in our extra-medical approach, that Isaac has a really strong response to soy. But consider our week. On Sunday he accidentally got a couple goldfish at Sunday school. The apologetic caretaker caught it a little too late, but at least this time they caught it. Last time it happened, we had an accident that night. Well, we didn't see anything from it on Sunday, so we figured it was a good sign, possibly of improvement. (PS, to note, now that I look back at my blogs, I saw we had another inexplicable accident on another recent Sunday, so maybe it was these accidental Sunday school treats explain a lot.). Sigh.
Maybe, actually, it was an improvement. Continuing on, we had a nice vegan week. Wednesday, we ate at some Japanese friends' house. We were pretty sure Isaac steered clear from soy, but when we saw blood the next day we were second guessing.
The bloody poop continued on Friday, and that's when we put our heads together and decided that maybe Isaac was getting too much soy in the traces of soy found in a new brand of "cheerio" cereal we also bought Wednesday. This explanation really seemed to fit, because he actually ate a big bowl as soon as we got home Wednesday evening (having not eaten very much at the Nanamis'). We also missed that night dose of sulfasalazine. And then he ate more cereal on Thurday morning, and also later that day as a snack.
So far we haven't minded trying foods which explain in the ingredients that soy is processed in the same facility, blah blah blah. But this time we think that this may be the culprit. Also, the warning was a little stronger than normal: "Grains used in this product contain traces of soybeans." Unfortunately, he also got this cereal for breakfast and as a snack on Friday. Since then, we stopped feeding him this possible poison. Today, still some blooglets, but according to previous reactions, the real test will be tomorrow to see if the bleeding subsides or continues.
Of course, we want it to be the Honey Oaties. It is so easy to feed him a certain brand of cheerio cereal as opposed to another brand. Does it mean we step even further into that realm of the particular parents who check labels and go the extra mile to make sure the food ingredients aren't processed where soy is processed? I guess so, but of course we shamelessly go there if it means avoiding surgery or at least prolonging a healthy life before it. So that's it. That's why I guess I hope it's the Honey Oaties.
And by the way, we're scheduled to see the doctor again in a couple weeks to check in with this latest development. And the most recent blood work was in which showed absolutely normal SED rates for Isaac, giving us hope that when he's well he really is well.
On Thursday we saw it, the undeniable bloogie in the tail end of Isaac's poop. What is a bloogie? A little red mucousy ribbon of blood found usually toward the end of a colitis poo. Of course we like to not see blood. On the other hand, we don't run to the hospital first thing when we see it either. As it were, the next day was a scheduled doctor's appointment (we generally have one every 4-6 weeks at this point), so we knew we could have a chat about it and see what was going on blood-wise.
For the doctor's visit, we heard the I word, Imuran, and we heard the S word, surgery. We've talked about an advanced med schedule for when what doesn't work and so on, but not for a while, because Isaac has been doing good for the most part. Reality sort of smacked us in the face a little, thinking again about the prospect that, yes, this might result in surgery someday. Stoma, colectomy, resection. Until last year these are words we couldn't precisely define. There are some that I still need to read up on. But you know, many of you who are reading this, that the reality of IBD sometimes involves these--that's just how it is.
Well, of course we want to avoid drastic treatments, or at least prolong the time before them, as long as we can keep Isaac in a healthy and beneficial state otherwise. Our approach, which you could call extra-medical if you want, because it sort of skirts and/or supplements the doctor's orders, is diet based and microbial based. We assert that while Isaac has some IBD genes and perhaps would have developed UC in any case, that it was triggered by early antibiotics, a meat-heavy diet early, and an intolerance/response to soy which may be a result of the above or may be incidental. We assert that his inflamed colon becomes so as a direct result of certain foods he eats or doesn't eat and/or his body's response to them, which in large part, we believe, has to do with having an optimum bowel environment for bowel microbes.
We have found, in our extra-medical approach, that Isaac has a really strong response to soy. But consider our week. On Sunday he accidentally got a couple goldfish at Sunday school. The apologetic caretaker caught it a little too late, but at least this time they caught it. Last time it happened, we had an accident that night. Well, we didn't see anything from it on Sunday, so we figured it was a good sign, possibly of improvement. (PS, to note, now that I look back at my blogs, I saw we had another inexplicable accident on another recent Sunday, so maybe it was these accidental Sunday school treats explain a lot.). Sigh.
Maybe, actually, it was an improvement. Continuing on, we had a nice vegan week. Wednesday, we ate at some Japanese friends' house. We were pretty sure Isaac steered clear from soy, but when we saw blood the next day we were second guessing.
The bloody poop continued on Friday, and that's when we put our heads together and decided that maybe Isaac was getting too much soy in the traces of soy found in a new brand of "cheerio" cereal we also bought Wednesday. This explanation really seemed to fit, because he actually ate a big bowl as soon as we got home Wednesday evening (having not eaten very much at the Nanamis'). We also missed that night dose of sulfasalazine. And then he ate more cereal on Thurday morning, and also later that day as a snack.
So far we haven't minded trying foods which explain in the ingredients that soy is processed in the same facility, blah blah blah. But this time we think that this may be the culprit. Also, the warning was a little stronger than normal: "Grains used in this product contain traces of soybeans." Unfortunately, he also got this cereal for breakfast and as a snack on Friday. Since then, we stopped feeding him this possible poison. Today, still some blooglets, but according to previous reactions, the real test will be tomorrow to see if the bleeding subsides or continues.
Of course, we want it to be the Honey Oaties. It is so easy to feed him a certain brand of cheerio cereal as opposed to another brand. Does it mean we step even further into that realm of the particular parents who check labels and go the extra mile to make sure the food ingredients aren't processed where soy is processed? I guess so, but of course we shamelessly go there if it means avoiding surgery or at least prolonging a healthy life before it. So that's it. That's why I guess I hope it's the Honey Oaties.
And by the way, we're scheduled to see the doctor again in a couple weeks to check in with this latest development. And the most recent blood work was in which showed absolutely normal SED rates for Isaac, giving us hope that when he's well he really is well.
Wednesday, March 2, 2011
normal sickness and UC
We haven't yet determined how normal sicknesses affect Isaac, but right now we're getting some ideas. A couple days after the last episode I wrote about, with the diarrhea, Isaac began throwing up. Of course, the first time, we didn't suspect it was anything more than an isolated event, but it was weird, because he vomited after taking his probiotic capsule (He has recently become good about taking pills--which is a whole other subject to blog about because that is one challenge of meds and young'uns.) and curiously, the pill itself stayed down. After that, at dinner, he spewed all of the rice milk he had drunk when we finally got him to take a bite of his food. At this point we were thinking that maybe he has a sort of upset stomach or that he had some bug. After he threw up that time, he did eat some more of his food without a problem.
Well, the next day, Bonnie reported that it seemed evident to her that he had learned how to throw up in defiance when we try to get him to eat something he doesn't want to eat. But as it is, we're not a 100% sure of that either, because he did develop a fever that day, which has persisted throughout today, and now he has a little sneezing, coughing, and sinus drip. In short, it seems like he has a little cold, and right now we're in observation mode because he has it, the other kids don't, and we hope it doesn't trigger a bowel issue or something like that. His appetite has definitely been down the last couple days, and he's had some tylenol and some cough medicine to help with some symptoms. Thankfully, his poop has seemed okay and he is on a regular sort of schedule even though it's twice a day since his last diarrhea episode I wrote about.
We have finally got into a good habit with our diet/symptom diary. We used Matt's spreadsheets (found in the left margin here), adjusted a little for our needs, and it's a great tool for us not only for the documentation and record keeping, but also for the reflecting and together time and discussion it promotes every evening when we fill it out.
Well, the next day, Bonnie reported that it seemed evident to her that he had learned how to throw up in defiance when we try to get him to eat something he doesn't want to eat. But as it is, we're not a 100% sure of that either, because he did develop a fever that day, which has persisted throughout today, and now he has a little sneezing, coughing, and sinus drip. In short, it seems like he has a little cold, and right now we're in observation mode because he has it, the other kids don't, and we hope it doesn't trigger a bowel issue or something like that. His appetite has definitely been down the last couple days, and he's had some tylenol and some cough medicine to help with some symptoms. Thankfully, his poop has seemed okay and he is on a regular sort of schedule even though it's twice a day since his last diarrhea episode I wrote about.
We have finally got into a good habit with our diet/symptom diary. We used Matt's spreadsheets (found in the left margin here), adjusted a little for our needs, and it's a great tool for us not only for the documentation and record keeping, but also for the reflecting and together time and discussion it promotes every evening when we fill it out.
Saturday, February 26, 2011
speaking too soon....
Well, in the last blog I gave a good report, but it was a little too soon. Within an hour of posting, we were cleaning up brown watery puddles of diarrhea on the floor where Isaac couldn't run to the bathroom fast enough.
Bathroom troubles with tots presents a certain challenge. When Isaac started having his problems last year he wasn't potty trained yet. By the end of the year something clicked and he knew what was going on. But folks, that's still just a couple months ago! So when something like this happened, as parents, we have to ask the question if it's a potty training issue or something else. But on the other hand, it's easy to tell it's not a potty training issue when it's his second poop of the day and it's loose diarrhea compared to a nice stool.
The first thing that happens, simultaneous with the clean up, is a frustration, "What could be the cause of this?!" Everything we are doing is careful and systematic, and we don't like to see something we can't explain. But then we replay the day, and realize he must have got a "treat" at church that afternoon. "Treats" like granola bars and goldfish, and well, almost anything bought in a store, contain soy lecethin or soybean oil, and if Isaac gets these things in his system, they're going to take a fast track of evacuation. The gals watching him that day were different from the regular Sunday crew, so we're putting it down to that.
As some of you may know dealing with allergies, we just have to be on top of this with Isaac's caregivers. I think it paints a good picture if we explain that if he gets anything unacceptable, in eight hours he will have uncontrollable diarrhea all over our house in a trail to the bathroom.
Other than that, we've started using the spreadsheet Matt posted for tracking diet and symptoms. And that was a couple days ago. Isaac has seemed to bounce back fine from that episode of diarrhea. We quizzed Orry about foods at church. Usually Orry (our four year old) is conscientious of what Isaac eats and "if it has soy in it", but we couldn't get a clear answer if they ate something or what they ate.
This morning is an early morning at the zoo, and we'll report more later.
Bathroom troubles with tots presents a certain challenge. When Isaac started having his problems last year he wasn't potty trained yet. By the end of the year something clicked and he knew what was going on. But folks, that's still just a couple months ago! So when something like this happened, as parents, we have to ask the question if it's a potty training issue or something else. But on the other hand, it's easy to tell it's not a potty training issue when it's his second poop of the day and it's loose diarrhea compared to a nice stool.
The first thing that happens, simultaneous with the clean up, is a frustration, "What could be the cause of this?!" Everything we are doing is careful and systematic, and we don't like to see something we can't explain. But then we replay the day, and realize he must have got a "treat" at church that afternoon. "Treats" like granola bars and goldfish, and well, almost anything bought in a store, contain soy lecethin or soybean oil, and if Isaac gets these things in his system, they're going to take a fast track of evacuation. The gals watching him that day were different from the regular Sunday crew, so we're putting it down to that.
As some of you may know dealing with allergies, we just have to be on top of this with Isaac's caregivers. I think it paints a good picture if we explain that if he gets anything unacceptable, in eight hours he will have uncontrollable diarrhea all over our house in a trail to the bathroom.
Other than that, we've started using the spreadsheet Matt posted for tracking diet and symptoms. And that was a couple days ago. Isaac has seemed to bounce back fine from that episode of diarrhea. We quizzed Orry about foods at church. Usually Orry (our four year old) is conscientious of what Isaac eats and "if it has soy in it", but we couldn't get a clear answer if they ate something or what they ate.
This morning is an early morning at the zoo, and we'll report more later.
Wednesday, February 23, 2011
poop
for reference:
By this poop chart, we can discuss stool consistency with a common reference. For the most part, people with IBD seem to struggle with diarrhea, but also many are affected with constipation instead/too. In Isaac's case, as an infant, he went from normal infant breastmilk poop (which is not solid), to a similar consistency of brown soft stool when he started eating solids. At this time with most kids, their stool gets harder and "normal"--Bristol Poo #3 or #4.
But for almost 20 months, that soft stool seemed fine. We talked about it with the doctors, but they didn't seem too concerned. However, last July the diarrhea began to worsen in the sense of liquidity, frequency, and duration of the bowel movement. (As a note of interest, we think it was about when we switched from soy milk to almond milk that this happened. Even though we've determined that soy is what causes him to react immediately--at least for now.). Then it got worse and bloody and progressed worse and worse until a dramatic turnaround to #2 for three weeks, then a gradual shift to #4-#5 and worse for some time, and then a gradual improvement until about two weeks ago, whereupon he's right at #3-#4 once a day or sometimes skipping a day if he has a low residue day.
Keeping a food/poop diary is a must for us while Isaac is growing and developing. We need to get on that. What we need to develop is a good method for us collecting our menu items and to report on stool on the same calendar. Bonnie already writes down the menu plans but it's always on separate pieces of paper. Hmmm.... Any thoughts or ideas or what works for you?
By this poop chart, we can discuss stool consistency with a common reference. For the most part, people with IBD seem to struggle with diarrhea, but also many are affected with constipation instead/too. In Isaac's case, as an infant, he went from normal infant breastmilk poop (which is not solid), to a similar consistency of brown soft stool when he started eating solids. At this time with most kids, their stool gets harder and "normal"--Bristol Poo #3 or #4.
But for almost 20 months, that soft stool seemed fine. We talked about it with the doctors, but they didn't seem too concerned. However, last July the diarrhea began to worsen in the sense of liquidity, frequency, and duration of the bowel movement. (As a note of interest, we think it was about when we switched from soy milk to almond milk that this happened. Even though we've determined that soy is what causes him to react immediately--at least for now.). Then it got worse and bloody and progressed worse and worse until a dramatic turnaround to #2 for three weeks, then a gradual shift to #4-#5 and worse for some time, and then a gradual improvement until about two weeks ago, whereupon he's right at #3-#4 once a day or sometimes skipping a day if he has a low residue day.
Keeping a food/poop diary is a must for us while Isaac is growing and developing. We need to get on that. What we need to develop is a good method for us collecting our menu items and to report on stool on the same calendar. Bonnie already writes down the menu plans but it's always on separate pieces of paper. Hmmm.... Any thoughts or ideas or what works for you?
Sunday, February 20, 2011
IBD Jigsaw Challenge
How are your jigsaw skills? How are your competitive skills? Here is an online jigsaw puzzle challenge for you (my time was 54 sec). While you solve it, say a little prayer (or otherwise send some good thoughts) for all people with ulcerative colitis or Crohn's.
Crohnies and other IBD peeps, at that site, make your own puzzle with a picture of you and come back and post the URL here in the comments!
Crohnies and other IBD peeps, at that site, make your own puzzle with a picture of you and come back and post the URL here in the comments!
Saturday, February 19, 2011
steroid-free, statistics, stool report
This week we've finished the tapering of prednisolone and now for medications Isaac has only his teaspoon of sulfasalazine three times a day, compounded in a goldenrod liquid form. If he eats any soy product, he'll have loose diarrhea the next bowel movement. If he drinks milk or consumes a lot of cheese, his stool seems to get softer--maybe not the next stool but at least the following one. He seems to do well otherwise, although currently his diet is mostly vegan and vegetarian.
We are getting more interested in the number of young children with IBD who also were exposed to antibiotics at a tender young age. For the science, however, we also want to see how many total children are exposed to antibiotics at a tender young age. Then compare the statistics and see if we have some significant correlation. Even if there is, it would be good then to see if we can determine a cause of IBD to be an imbalance of bacterial and microbial development in the digestive system. Perhaps if the genes are right, this imbalance can trigger IBD. Perhaps even if the genes are not right, this imbalance alone can cause IBD. It seems that when the immune system is reset, IBD is curable. As far as we can tell from testimonies, it seems that healing has taken place when somebody with IBD is able to heal themselves with juiced whole foods and diet change and/or probiotics. It's hard to gather stats for people who have a slight (or significant) run-in with IBD, but then heal completely. Because if someone heals completely, s/he isn't going to be counted in any sort of statistic set of IBD patients. S/He is just a normal person who is not going to be seeing the doctor about her/his condition. Moreover, the condition is probably retrospectively not going to be seen as IBD, which goes down as a mysterious chronic disease and not something that spontaneously resolves. I think I'm going to make some library trips and read up on the literature out there and see what more we can learn.
I think Bonnie wasn't thinking the other day when at the museum, she got some McDonalds for a lunch for the boys. They had chicken nuggets and french fries, but sure enough, we saw a loose liquidy stool yesterday (Actually the second stool of the day. The first one started fine but ended loose). It's unnerving because we don't want him to have another flare-up and it's this sort of thing that can induce one. We generally keep up on his poop in order to monitor this sort of stuff and also see how different foods affect him. For example, today we're going easy on fiber in order to not overwork his system. We'll see what we're looking at next before we go to the level of doctor notification....
We are getting more interested in the number of young children with IBD who also were exposed to antibiotics at a tender young age. For the science, however, we also want to see how many total children are exposed to antibiotics at a tender young age. Then compare the statistics and see if we have some significant correlation. Even if there is, it would be good then to see if we can determine a cause of IBD to be an imbalance of bacterial and microbial development in the digestive system. Perhaps if the genes are right, this imbalance can trigger IBD. Perhaps even if the genes are not right, this imbalance alone can cause IBD. It seems that when the immune system is reset, IBD is curable. As far as we can tell from testimonies, it seems that healing has taken place when somebody with IBD is able to heal themselves with juiced whole foods and diet change and/or probiotics. It's hard to gather stats for people who have a slight (or significant) run-in with IBD, but then heal completely. Because if someone heals completely, s/he isn't going to be counted in any sort of statistic set of IBD patients. S/He is just a normal person who is not going to be seeing the doctor about her/his condition. Moreover, the condition is probably retrospectively not going to be seen as IBD, which goes down as a mysterious chronic disease and not something that spontaneously resolves. I think I'm going to make some library trips and read up on the literature out there and see what more we can learn.
I think Bonnie wasn't thinking the other day when at the museum, she got some McDonalds for a lunch for the boys. They had chicken nuggets and french fries, but sure enough, we saw a loose liquidy stool yesterday (Actually the second stool of the day. The first one started fine but ended loose). It's unnerving because we don't want him to have another flare-up and it's this sort of thing that can induce one. We generally keep up on his poop in order to monitor this sort of stuff and also see how different foods affect him. For example, today we're going easy on fiber in order to not overwork his system. We'll see what we're looking at next before we go to the level of doctor notification....
Wednesday, December 29, 2010
update series: the liberation
At our doctor's appointment just before thanksgiving we got explicit instructions to liberate Isaac's diet, which meant give him some animal proteins. He weighed a pound less than his previous appointment and his iron levels were low, so let's beef him up, I think they thought.
I was still pretty insistent on getting back to the vegan diet and using vegan tools to increase weight and iron. But around this time it got pretty heated again, between Bonnie and me. One of the factors that kept coming up were my control issues. Now, I will admit I have some control issues. I always like to analyze my self and make improvements when necessary, and I think I've handled my control issues fairly well since I was 17. This particular situation didn't seem to me to be about my control issues AT ALL, but after hearing it a few times, I said something like, "You (directed at any audience which thinks so) think I want to be in charge of all this? I would happily accept the care/instructions of somebody else who will do better. But I am completely convinced that there are other, more reasonable and scientific treatments to try before steroids or at least before assuming we can't make progress with diet."
So in my controlling way, I relinquished control entirely and told Bonnie that she was in charge of what Isaac was eating and taking and so on. And at most I would only frown upon what I saw, and put in my two cents.
He was actually having softer bowel movements ever since that first couple weeks of nice solid poops. but these bowel movements were completely formed and still definitely within normal and healthy, it would seem. He continued in this way for another week or so after we "liberated his diet".
I was still pretty insistent on getting back to the vegan diet and using vegan tools to increase weight and iron. But around this time it got pretty heated again, between Bonnie and me. One of the factors that kept coming up were my control issues. Now, I will admit I have some control issues. I always like to analyze my self and make improvements when necessary, and I think I've handled my control issues fairly well since I was 17. This particular situation didn't seem to me to be about my control issues AT ALL, but after hearing it a few times, I said something like, "You (directed at any audience which thinks so) think I want to be in charge of all this? I would happily accept the care/instructions of somebody else who will do better. But I am completely convinced that there are other, more reasonable and scientific treatments to try before steroids or at least before assuming we can't make progress with diet."
So in my controlling way, I relinquished control entirely and told Bonnie that she was in charge of what Isaac was eating and taking and so on. And at most I would only frown upon what I saw, and put in my two cents.
He was actually having softer bowel movements ever since that first couple weeks of nice solid poops. but these bowel movements were completely formed and still definitely within normal and healthy, it would seem. He continued in this way for another week or so after we "liberated his diet".
update series: the deception
Well, it is my duty to write updates on our IBD experience. And a lot of time and drama has ensued since my last post. I will catch up in a series of posts which hopefully capture our experience chronologically.
The first day of our steroids resulted in solid poop. And we also, that day, went back to the basic elimination diet with the intent of various food introduction while keeping vegan. And the other important piece of information is that I, dad, was in charge of morning medications, which included the daily steroids.
Well, I was so tickled at that immediate response, and as I reported, uncomfortable about the steroids, that the next day I gave him 4.5 ml instead of 5ml to see if we could tell a difference. And day 2, also nothing but a nice solid poop in the evening. So day 3, I gave him only 4ml. Solid poop. On day 4 I realized that from then on I was going to be giving him only a little steroids, and not enough to be very significant. But I decided to go ahead and see if his reaction changed. And it didn't. For the next few days I kept reducing it to nothing at all, and meanwhile Isaac's poop was nice and healthy.
This was all good and well, except that I hadn't consulted with the doctor, or even Isaac's mom. So you can imagine how upset she was when about 12 days later I broke her the news. I had to tell her, because I was going somewhere and she was going to be giving him his morning medications, and I didn't want her to just give him full doses of steroids for no good reason. Well, she flipped out, and then I felt so sheepish I called the doctor's office to confess and see if they wanted to advise us differently.
Since Isaac's stool was nice and healthy they said not to worry about anything until our next doctor's appointment which was coming right up.
I will reiterate that this whole ordeal has been quite a strain for Bonnie and me. We keep reminding ourselves that we both want the same thing, but it is clear that I don't really trust conventional health care (pharmaceuticals, mainly) to get us to that point and Bonnie wants to trust it. So we butt heads about methods. However, let me say, it wasn't very good of me to pull what I pulled. What would have been better is clear communication with lots of persuasive reasoning, followed by an informed consensus between my wife, me, and the doctor.
Also in this span of time, Isaac went to his grandparents. And chomped on some bacon and I don't know what else, but I know that a vegan diet doesn't follow him around very well unless we're at home.
The first day of our steroids resulted in solid poop. And we also, that day, went back to the basic elimination diet with the intent of various food introduction while keeping vegan. And the other important piece of information is that I, dad, was in charge of morning medications, which included the daily steroids.
Well, I was so tickled at that immediate response, and as I reported, uncomfortable about the steroids, that the next day I gave him 4.5 ml instead of 5ml to see if we could tell a difference. And day 2, also nothing but a nice solid poop in the evening. So day 3, I gave him only 4ml. Solid poop. On day 4 I realized that from then on I was going to be giving him only a little steroids, and not enough to be very significant. But I decided to go ahead and see if his reaction changed. And it didn't. For the next few days I kept reducing it to nothing at all, and meanwhile Isaac's poop was nice and healthy.
This was all good and well, except that I hadn't consulted with the doctor, or even Isaac's mom. So you can imagine how upset she was when about 12 days later I broke her the news. I had to tell her, because I was going somewhere and she was going to be giving him his morning medications, and I didn't want her to just give him full doses of steroids for no good reason. Well, she flipped out, and then I felt so sheepish I called the doctor's office to confess and see if they wanted to advise us differently.
Since Isaac's stool was nice and healthy they said not to worry about anything until our next doctor's appointment which was coming right up.
I will reiterate that this whole ordeal has been quite a strain for Bonnie and me. We keep reminding ourselves that we both want the same thing, but it is clear that I don't really trust conventional health care (pharmaceuticals, mainly) to get us to that point and Bonnie wants to trust it. So we butt heads about methods. However, let me say, it wasn't very good of me to pull what I pulled. What would have been better is clear communication with lots of persuasive reasoning, followed by an informed consensus between my wife, me, and the doctor.
Also in this span of time, Isaac went to his grandparents. And chomped on some bacon and I don't know what else, but I know that a vegan diet doesn't follow him around very well unless we're at home.
Tuesday, November 2, 2010
roids and so on
We started steroids today, and I just have an awful feeling about it. Also today we took a step back in our diet. The last week has been a lot of digression in poop habits, and it was the week we re-introduced meat and cheese. Also we ran into a bunch of convincing information about animal proteins and UC.
The other medicine Isaac is on is something a lot like aspirin, which is made to specifically target the colon with anti-inflammatory action. Actually, I'm not that bothered by that. There is lots of long-term aspirin research out there and it just isn't that scary. However, for a reason not clear to me, this particular drug also contains a sulfa drug to administer the 5-ASA (the sulfa drug binds to it until it reaches the colon, where something about the colon-specific environment breaks down the connection and absorbs the 5-ASA). There are other drugs that do it differently. What bothers me is that the sulfa drug is an antibiotic, so it's got to be killing all the probiotics we're attempting to grow in that colon-specific environment, no? I'm waiting to hear from the doctor on that one. It might be that dosing a 13kg tyke is tricky (the non sulfa drug uses a pH coating which allows it to get to the colon before breaking down--but Isaac's dose is probably .2 or .25 the usual minimum dose).
We did see a small solid turd tonight, which is such a rare sight we can barely wait until the morning to see what else might come out of Isaac's colon.
The other medicine Isaac is on is something a lot like aspirin, which is made to specifically target the colon with anti-inflammatory action. Actually, I'm not that bothered by that. There is lots of long-term aspirin research out there and it just isn't that scary. However, for a reason not clear to me, this particular drug also contains a sulfa drug to administer the 5-ASA (the sulfa drug binds to it until it reaches the colon, where something about the colon-specific environment breaks down the connection and absorbs the 5-ASA). There are other drugs that do it differently. What bothers me is that the sulfa drug is an antibiotic, so it's got to be killing all the probiotics we're attempting to grow in that colon-specific environment, no? I'm waiting to hear from the doctor on that one. It might be that dosing a 13kg tyke is tricky (the non sulfa drug uses a pH coating which allows it to get to the colon before breaking down--but Isaac's dose is probably .2 or .25 the usual minimum dose).
We did see a small solid turd tonight, which is such a rare sight we can barely wait until the morning to see what else might come out of Isaac's colon.
Thursday, October 28, 2010
UC
Diagnosis: ulcerative colitis. Did you know its incidence is around 3 in one million for his age group? So he is one of the about 15 kiddos here in Houston with similar conditions. Actually, they have a center here for families with kids with IBD. That's nice. I think we'll get involved.
The doctor is hopeful, and so are we, that he will respond positively to an anti-inflammatory medication he will presumably take for the rest of his life. We'll keep you posted.
The doctor is hopeful, and so are we, that he will respond positively to an anti-inflammatory medication he will presumably take for the rest of his life. We'll keep you posted.
Monday, October 25, 2010
scope prep, etc
This week we've got the scope rescheduled for Thursday. We had some insurance issues and it got changed, and, well, there's a whole story about that drama, but for now it looks like Thursday will be a revealing day for our little guy.
We have identified, with high probability, one factor that inflames Isaac's colon, and that is soy and soy things. Like soy lecithin, or soy fat, which is in a lot of things--just look at the ingredients. How much will cause a flare-up? Not much, since there can't be much in a couple bites of foodstuffs, and that is how much seemed to prompt two flare-ups Isaac has had in the past week. With those small amounts we can expect one episode of bathroom tribulation, a couple or few hours of "having to go", but passing what in the worst case is just blood and mucus. This is good information. It tells us that the stuff passes through his system at a normal rate, even when he's flared up.
With colitis, and we still don't know for sure what it is, exactly, that we're dealing with, something (like soy) may aggravate the colon one time, but perhaps not aggravate it another time. But it's good to know, that for now, we have identified a dietary factor of inflammation. We had suspicions about soy from the first of Isaac's worst bowel movements. It should be noted that for at least 6 months (20 mos to 26 mos) he had mostly soy milk for his milk purposes. He had diarrhea during this time (he's always had diarrhea), but no episodes like we've been experiencing the last couple months.
Anyway, we had quite a weekend with his flaring up one night where I spent a lot of one night in the bathroom instead of the bed. I wanted to bring out the colonics kit, but it was in Houston, and we were in Louisiana. As it was, it was good to see that the episode came and went and so did Isaac's discomfort, apparently.
A positive thing is that with all this bathroom duty, it seems like Isaac is really figuring out his potty urges and how to get us to help him get to the potty. Hooray!
We have identified, with high probability, one factor that inflames Isaac's colon, and that is soy and soy things. Like soy lecithin, or soy fat, which is in a lot of things--just look at the ingredients. How much will cause a flare-up? Not much, since there can't be much in a couple bites of foodstuffs, and that is how much seemed to prompt two flare-ups Isaac has had in the past week. With those small amounts we can expect one episode of bathroom tribulation, a couple or few hours of "having to go", but passing what in the worst case is just blood and mucus. This is good information. It tells us that the stuff passes through his system at a normal rate, even when he's flared up.
With colitis, and we still don't know for sure what it is, exactly, that we're dealing with, something (like soy) may aggravate the colon one time, but perhaps not aggravate it another time. But it's good to know, that for now, we have identified a dietary factor of inflammation. We had suspicions about soy from the first of Isaac's worst bowel movements. It should be noted that for at least 6 months (20 mos to 26 mos) he had mostly soy milk for his milk purposes. He had diarrhea during this time (he's always had diarrhea), but no episodes like we've been experiencing the last couple months.
Anyway, we had quite a weekend with his flaring up one night where I spent a lot of one night in the bathroom instead of the bed. I wanted to bring out the colonics kit, but it was in Houston, and we were in Louisiana. As it was, it was good to see that the episode came and went and so did Isaac's discomfort, apparently.
A positive thing is that with all this bathroom duty, it seems like Isaac is really figuring out his potty urges and how to get us to help him get to the potty. Hooray!
Monday, October 4, 2010
Our Rundown
IBD in Our Home reports our experiences. Further, it aims to cultivate community support and to increase the collective experiential learning of anybody curious about IBD or who is affected by a member of the household with IBD.
Our two year old child Isaac is about to become diagnosed, we presume, with ulcerative colitis or another version of Inflammatory Bowel Disease. Not long ago (less than a month) it seemed like quite a shocker to relate a chronic disease to this quite perfect and bubbly lovable kiddo. But the diagnosis seemed probably based on what I could find on the internet, and since then, all tests seem to point in that direction. A colonoscopy is scheduled for next week, but it might not happens because of insurance reasons. And honestly, I'm not that eager for the scope, although I would like to get a treatment going to help heal his bowel inflammation (whatever the underlying disease or cause).
It is an incredible stressor on our spousal relationship. It seems like whatever I say seems to set off my wife, and vice verse, regarding diagnosis, prognosis, treatment, role of diet, etc. This is easily as much friction as we have experienced in our marriage. And I wouldn't even say we have vastly different viewpoints--it's just that we are intense about our feelings for diagnosis and treatment, and we're critical of each other's desires, since the amount of "control" we have ourselves is so very limited in the first place. For example, I would be happy to forego the colonoscopy, at least for now, and get going right away on a steroid treatment, where as Bonnie feels like the knowledge we can gain from the colonoscopy is essential to Isaac's eventual prognosis and treatment details. As it is, it seems like Fate might be taking care of it, since we learned today that our insurance isn't accepted by the doctor we've already seen who scheduled the scope.
Meanwhile, we are taking a treatment in our own hands, which we should have concerned ourselves with at a higher priority much earlier. Isaac never switched from baby breastfed poop (which is primarily runny and not at all formed, and is, actually, a lot like mustard, to remind or inform you), to solid poop. Our first child made this switch naturally when he changed to solids, and I understand that's normal. We always had our eyebrows raised at Isaac's stool, because of this, but our measures included a mediocre attempt at switching some foods to check for allergies. As long as we could tell, we could detect no reactions, but we were never inclined to investigate thoroughly or long-term.
We brought our concern to our doctor early on, but heard about toddler's diarrhea, and pretty much kept assuming, like our doctor, I guess, that it was a temporary situation which would correct itself. We cut down on fruit juice, which our doctor mentioned, and tried in our non-desperate way to get Isaac to eat yogurt.
Our own diet? Ironically, about a year ago, we went mostly vegan/vegetarian. We didn't cut meat from our boys' diets as much as we did from ours, but especially in retrospect it seems like Isaac ate more and more meat when we ate less and less. I'll expand more on Isaac's lifetime diet history another time.
Nowadays, Isaac is going mostly vegan too. And soft, easy to digest foods. This just really started the other day, though. The past two weeks he's been on meat and milk restrictions, but we're going to continue with an elimination diet and see if we can strictly understand some diet sensitivities.
The other big deal nowadays is colonics. It became clear lately that this sort of thing is going to help the little guy. So finally yesterday I went and got an enema kit and we're going down that path. I had a big mental block about this, but it was easy to overcome the more I read about it and the more I sensed the desperation of Isaac's bowels and the way the Health Care and Insurance system is bound to treat him. Our first experience with it was notedly positive, so we'll continue and I can report more about that later too.
Isaac is 28 months old, and since he was weaned at 12 months, he has had bowel issues for about 16 months at least. Overall, he is happy, bubbly, and other than his diaper contents, no one would expect a pathology. But in the past two months his diarrhea became bloody and, more recently, persistently worse. How bad? Sometimes it's just blood and mucus. Mostly it's runny, with blood. And we also still see soft stools (not at all formed, but not liquidy). His blood levels are acceptable, to assuage your immediate concern if you have it.
My hope is that with diet and colonics we can help his body get over the flare-up while we wait for the doctors to schedule appointments and make their prognoses. I will keep this blog up-to-date so we can share this experience and perhaps hear from others of you if you have something to share.
Our two year old child Isaac is about to become diagnosed, we presume, with ulcerative colitis or another version of Inflammatory Bowel Disease. Not long ago (less than a month) it seemed like quite a shocker to relate a chronic disease to this quite perfect and bubbly lovable kiddo. But the diagnosis seemed probably based on what I could find on the internet, and since then, all tests seem to point in that direction. A colonoscopy is scheduled for next week, but it might not happens because of insurance reasons. And honestly, I'm not that eager for the scope, although I would like to get a treatment going to help heal his bowel inflammation (whatever the underlying disease or cause).
It is an incredible stressor on our spousal relationship. It seems like whatever I say seems to set off my wife, and vice verse, regarding diagnosis, prognosis, treatment, role of diet, etc. This is easily as much friction as we have experienced in our marriage. And I wouldn't even say we have vastly different viewpoints--it's just that we are intense about our feelings for diagnosis and treatment, and we're critical of each other's desires, since the amount of "control" we have ourselves is so very limited in the first place. For example, I would be happy to forego the colonoscopy, at least for now, and get going right away on a steroid treatment, where as Bonnie feels like the knowledge we can gain from the colonoscopy is essential to Isaac's eventual prognosis and treatment details. As it is, it seems like Fate might be taking care of it, since we learned today that our insurance isn't accepted by the doctor we've already seen who scheduled the scope.
Meanwhile, we are taking a treatment in our own hands, which we should have concerned ourselves with at a higher priority much earlier. Isaac never switched from baby breastfed poop (which is primarily runny and not at all formed, and is, actually, a lot like mustard, to remind or inform you), to solid poop. Our first child made this switch naturally when he changed to solids, and I understand that's normal. We always had our eyebrows raised at Isaac's stool, because of this, but our measures included a mediocre attempt at switching some foods to check for allergies. As long as we could tell, we could detect no reactions, but we were never inclined to investigate thoroughly or long-term.
We brought our concern to our doctor early on, but heard about toddler's diarrhea, and pretty much kept assuming, like our doctor, I guess, that it was a temporary situation which would correct itself. We cut down on fruit juice, which our doctor mentioned, and tried in our non-desperate way to get Isaac to eat yogurt.
Our own diet? Ironically, about a year ago, we went mostly vegan/vegetarian. We didn't cut meat from our boys' diets as much as we did from ours, but especially in retrospect it seems like Isaac ate more and more meat when we ate less and less. I'll expand more on Isaac's lifetime diet history another time.
Nowadays, Isaac is going mostly vegan too. And soft, easy to digest foods. This just really started the other day, though. The past two weeks he's been on meat and milk restrictions, but we're going to continue with an elimination diet and see if we can strictly understand some diet sensitivities.
The other big deal nowadays is colonics. It became clear lately that this sort of thing is going to help the little guy. So finally yesterday I went and got an enema kit and we're going down that path. I had a big mental block about this, but it was easy to overcome the more I read about it and the more I sensed the desperation of Isaac's bowels and the way the Health Care and Insurance system is bound to treat him. Our first experience with it was notedly positive, so we'll continue and I can report more about that later too.
Isaac is 28 months old, and since he was weaned at 12 months, he has had bowel issues for about 16 months at least. Overall, he is happy, bubbly, and other than his diaper contents, no one would expect a pathology. But in the past two months his diarrhea became bloody and, more recently, persistently worse. How bad? Sometimes it's just blood and mucus. Mostly it's runny, with blood. And we also still see soft stools (not at all formed, but not liquidy). His blood levels are acceptable, to assuage your immediate concern if you have it.
My hope is that with diet and colonics we can help his body get over the flare-up while we wait for the doctors to schedule appointments and make their prognoses. I will keep this blog up-to-date so we can share this experience and perhaps hear from others of you if you have something to share.
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