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 UC. Show all posts
Showing posts with label UC. Show all posts
Monday, April 30, 2012
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 |
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.
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| 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.
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.
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....
Tuesday, April 19, 2011
solid poop again!
Okay, at last, today, there was much to do around the toilet bowl as Isaac squeezed out a healthy 3,4 stool. It follows a 3,6 stool yesterday, which suggests that we're on the up and up at last.
Today was also a doctor appointment, with the doctor down the street from the usual guy. I took the luxury of attending this appointment, and have decided to also meet every other appointment or so with our regular doc, in the aim of developing a better relationship. The second doctor gave a pretty good affirmation of the stance of the first doctor, and we talked and talked about this and that. We found out we can get a prescription for probiotics, so we're pleased about that as it will help with the bills.
Well, we were so pleased with a better stool today (after the doctor appointment) that it pretty much has overshadowed our dismay. We also don't know if it is finally the steroids, or if it was the fish oil we started giving the other day, and also we have a small list of other things we could put it down to. Meanwhile, no more honey oaties, as we mentioned before.
Today was also a doctor appointment, with the doctor down the street from the usual guy. I took the luxury of attending this appointment, and have decided to also meet every other appointment or so with our regular doc, in the aim of developing a better relationship. The second doctor gave a pretty good affirmation of the stance of the first doctor, and we talked and talked about this and that. We found out we can get a prescription for probiotics, so we're pleased about that as it will help with the bills.
Well, we were so pleased with a better stool today (after the doctor appointment) that it pretty much has overshadowed our dismay. We also don't know if it is finally the steroids, or if it was the fish oil we started giving the other day, and also we have a small list of other things we could put it down to. Meanwhile, no more honey oaties, as we mentioned before.
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.
Sunday, March 27, 2011
chronic illness and love and other drugs
We watched Love and Other Drugs. While the content itself is a world away from our experience with Isaac, it is worth mentioning that the character living with a chronic disease hit home in a big way thinking about Isaac and his life ahead of him. In the movie, the character with Parkinson's has done a lot of self-work coming to terms with her conditions, but her love interest has to start at the beginning, which is where my wife and I started as well, about seven months ago or so.
At the beginning we both hope and fear for a diagnosis. Of course we hope the diagnosis is something curable and treatable, even while it looks like all signs point otherwise. But also, before a good diagnosis is made, we just want to know something. Simultaneously, we don't want to hear a diagnosis that means a lifetime of attention, surgery, or anything drastic.
Maybe that's why the first stage after that is some sort of rosy hope stage where we are sure that we can find a way to beat the disease. We know that if we just eat the right thing or can make the right adjustment then everything will be okay, that even everything will be as we otherwise expected, save for the adjustments. In the movie, as soon as Jamie (the love interest) realizes the reality of Maggie's Parkinson's symptoms, he is off like a shot to find all the latest treatments and figure out just how they are going to solve the problem. It reminds me of me, and diet and probiotics, with Isaac.
But there is this stage of acceptance that I am easing into, and it is what follows the fervor of the newly-diagnosed. One sort of finds a peace with the reality of the condition, and without losing hope and doing whatever we can to treat and cure, we also accept that this condition affects us and will do so for a long long time if not forever. The movie does a good job of showing Maggie's inspiring balance she has found, and Jamie's struggle as to whether or not he can make it to that acceptance phase.
Of course there are other themes in the movie worth mentioning. Like the pharmaceutical racket, the disillusionment of doctors, and the eruption of the US health insurance system.
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....
Tuesday, February 8, 2011
treatments and statistics and, to Isaac:
Oh, how I would love to get my hands on a diverse set of statistics ranging from holistic treatments, diet change, surgery, medications, and plainly see how much each was effective. Since there's such a range of actual illness chunked together as IBD, it's no surprise that some are cured by diet, some by surgery, some aren't cured, some seem to grow out of their problems, and so on.
Isaac is talking more and more. I'm looking forward to being able to talk about his experience with him. But as a parent, you know, I also want to savor the young years. So no hurry, Isaac, but it's nice to see you stringing sentences together.
Poopwise, you're doing great. We have a fun time stuffing delicious stews in your face, but we know you like the extra attention. Also, your mealtime prayers are the cutest. After a few more months maybe we'll understand better what you're saying!
Isaac, one thing you're going to understand by the time you are a teenager is science. Because a large portion of how you're being raised depends on the scientific method. You're going to know all about control, careful experiment. And just wait until we can get you to fill out your food input/output diary.
Love,
your parents.
Isaac is talking more and more. I'm looking forward to being able to talk about his experience with him. But as a parent, you know, I also want to savor the young years. So no hurry, Isaac, but it's nice to see you stringing sentences together.
Poopwise, you're doing great. We have a fun time stuffing delicious stews in your face, but we know you like the extra attention. Also, your mealtime prayers are the cutest. After a few more months maybe we'll understand better what you're saying!
Isaac, one thing you're going to understand by the time you are a teenager is science. Because a large portion of how you're being raised depends on the scientific method. You're going to know all about control, careful experiment. And just wait until we can get you to fill out your food input/output diary.
Love,
your parents.
Saturday, February 5, 2011
inspiring and overwhelming
Reading about so many other IBD experiences is both inspiring and overwhelming. On one hand you have a lot of cure/treatment stories which tend to give you hope that the right treatment/diet/circumstances will keep it from being chronic. On the other hand, you get the other side of it too, where one thing leads only to something else, and any number of drug treatments and surgeries later and still the pain and problems persist.
Somewhere in the middle of this hope spectrum we and most IBD patients exist. A really good interpretation of this is the spoon theory penned by lupus patient Christine Miserandino. It describes an aspect of chronic disease, and as far as I can say, also gives you a perspective of parenting a wee one diagnosed with IBD.
Today for example, we went to an activity at a church which is new to us (we are also new to our area). The kids we dropped off with a nursery there. We dropped them off with snacks, and we have paperwork filled out about Isaac not tolerating soy anything, which also includes almost every merchandised food product. However, almost the whole time I was eating and snacking on the foods provided to us adults, I couldn't help but think about how I sure hoped Isaac wasn't getting any of that sneaked to him by a caregiver with good intentions (soy things just really inflame him). Happily, nothing like that transpired, but it sure made me think about others who have to care so much about paricular allergies/diets/exposures.
Also, nowadays everything is going okay with him. But if it weren't, I can't imagine that we could do activities where Bonnie and I are both doing something for more than an hour (or maybe even that). Until, I guess, we know enough caregivers that we can make arrangements. We'll see--more no that as we experience it. It's probably best to worry about things as they occur and not so much before.
Somewhere in the middle of this hope spectrum we and most IBD patients exist. A really good interpretation of this is the spoon theory penned by lupus patient Christine Miserandino. It describes an aspect of chronic disease, and as far as I can say, also gives you a perspective of parenting a wee one diagnosed with IBD.
Today for example, we went to an activity at a church which is new to us (we are also new to our area). The kids we dropped off with a nursery there. We dropped them off with snacks, and we have paperwork filled out about Isaac not tolerating soy anything, which also includes almost every merchandised food product. However, almost the whole time I was eating and snacking on the foods provided to us adults, I couldn't help but think about how I sure hoped Isaac wasn't getting any of that sneaked to him by a caregiver with good intentions (soy things just really inflame him). Happily, nothing like that transpired, but it sure made me think about others who have to care so much about paricular allergies/diets/exposures.
Also, nowadays everything is going okay with him. But if it weren't, I can't imagine that we could do activities where Bonnie and I are both doing something for more than an hour (or maybe even that). Until, I guess, we know enough caregivers that we can make arrangements. We'll see--more no that as we experience it. It's probably best to worry about things as they occur and not so much before.
Saturday, January 29, 2011
life after roids
Well, we're still in the "weaning off" stage of discontinuing six weeks of full dose prednisolone for Isaac's UC. For a two and a half year old, parents are bound to experience mood changes and independence--a particular vigor of life which often leaves parents wringing their hands for the "terrible twos" to pass. Well, especially the last few weeks left us wringing our hands with little Isaac.
The best anecdote was when Bonnie listed off half a dozen bizarre scenarios which included the slinging of toilet water, climbing on top of the TV, jumping off the couch, bouncing everywhere like a bunny, getting into this or getting into that. By and large, it wasn't anything different from any run of the mill experience with a two year old. Then, she clarified, however, at the end of the list, that it was merely the antics of one day. Many of you who have had kids can understand, I know. Just string all of those such days together with no naps for a few weeks and then I think you've got it.
Now that we've cut back on the steroids, he is napping again and he seems to have his regular self back, already. You know from my writing that I was a little anxious about the steroids, so I am relieved to see that he seems to be getting back to normal just fine. Although I do still await what the next few weeks will bring, and of course I hope he has no long-term ill effects.
Bowel-wise, we're all good. From our previous experience, it's going to be hard to convince me that the steroids are necessary. The science of it goes like this. At our last check up, when we were given the clear to reduce the steroid dosage, they took no blood work. The results they gave us that day were from the previous bloodwork three weeks ago. In that time, we saw improvement, but now we have no baseline for what "good" is really like. We will see the doctor in another month (six weeks from the last appointment) though so hopefully Isaac will still be doing just fine. I am pretty optimistic about the probiotics, which seem to be getting the best and surest results. Although, like I've written about before--it's so hard to tell what is doing what since we're doing a lot all at once.
This isn't the first time I've written this, but we suspect cow's milk triggers reactions--less than soy but greater than any other thing we've identified as far as we can tell.
I'm pretty comfortable with our diet and Isaac. We eat omnivorously on Wednesdays, vegetarian on days that begin with T, and vegan on the other days.
We have wanted to get more involved with families around Houston who cope with IBD, but so far we haven't done any of that. Perhaps as we get settled into our house and this side of town we'll be more on top of social networking. Our goal at this point is to keep on top of intake and output and register any fluctations, keep up on the anti-inflammatory medicine (hopefully get him switched to non-antibacterial pills instead of the antibacterial liquid form), stay faithful with the probiotics and see if we can't keep his condition stable for a long a time as possible. Being involved with other families with similar goals would probably help.
The best anecdote was when Bonnie listed off half a dozen bizarre scenarios which included the slinging of toilet water, climbing on top of the TV, jumping off the couch, bouncing everywhere like a bunny, getting into this or getting into that. By and large, it wasn't anything different from any run of the mill experience with a two year old. Then, she clarified, however, at the end of the list, that it was merely the antics of one day. Many of you who have had kids can understand, I know. Just string all of those such days together with no naps for a few weeks and then I think you've got it.
Now that we've cut back on the steroids, he is napping again and he seems to have his regular self back, already. You know from my writing that I was a little anxious about the steroids, so I am relieved to see that he seems to be getting back to normal just fine. Although I do still await what the next few weeks will bring, and of course I hope he has no long-term ill effects.
Bowel-wise, we're all good. From our previous experience, it's going to be hard to convince me that the steroids are necessary. The science of it goes like this. At our last check up, when we were given the clear to reduce the steroid dosage, they took no blood work. The results they gave us that day were from the previous bloodwork three weeks ago. In that time, we saw improvement, but now we have no baseline for what "good" is really like. We will see the doctor in another month (six weeks from the last appointment) though so hopefully Isaac will still be doing just fine. I am pretty optimistic about the probiotics, which seem to be getting the best and surest results. Although, like I've written about before--it's so hard to tell what is doing what since we're doing a lot all at once.
This isn't the first time I've written this, but we suspect cow's milk triggers reactions--less than soy but greater than any other thing we've identified as far as we can tell.
I'm pretty comfortable with our diet and Isaac. We eat omnivorously on Wednesdays, vegetarian on days that begin with T, and vegan on the other days.
We have wanted to get more involved with families around Houston who cope with IBD, but so far we haven't done any of that. Perhaps as we get settled into our house and this side of town we'll be more on top of social networking. Our goal at this point is to keep on top of intake and output and register any fluctations, keep up on the anti-inflammatory medicine (hopefully get him switched to non-antibacterial pills instead of the antibacterial liquid form), stay faithful with the probiotics and see if we can't keep his condition stable for a long a time as possible. Being involved with other families with similar goals would probably help.
Monday, January 17, 2011
update series: the frustration
A while after we liberated Isaac's diet to include meat, wouldn't you know it, his poops started getting softer. And there soon came a time when we felt like he was going to start having problems again. I guess the indications were the softer poop, but also he seemed to be needing to poop longer, starting to show more signs of discomfort. And maybe there were the twice a day potty time instead of once a day. Anyway, the other thing was the smell. I remember at one point thinking, this smell reminds me of before.
So shortly after those signs he started to have some bad diarrhea and blood showing up. Intent to nip the problem in the bud, we got him in right away to the doctor, who prescribed a real steroid treatment that we should expect to adhere to for weeks. Well, we were thinking that it's probably best. But what was in store was more frustration.
Isaac responded to the steroids maybe, but not immediately, and not so fully as what we saw previously. Even after three weeks of steroids we couldn't really say that his poop was "better", although it definitely wasn't bloody and it did seem to be more acceptable than unacceptable (acceptable is formed but soft--we call it "soft serve" frankly--that may break apart some in water, but unacceptable is more liquidy or formed stool that immediately breaks apart completely when it hits the water). At that point the doctor said that we should continue for another three weeks and see if we can learn anything.
His sed rates for these times showed curious things. Sed rates measure the sedimentation rates of eurythrocytes in blood, and it is a good indicator of inflammation. Isaac gets blood drawn every time, but the blood they tell us about was "last time's" blood. So we have an unfortunate lag between real time and inflammation indicators. Anyway, I can't remember the sed details except that they were a little baffling, and the doctor explained that sometimes sed rates lag behind inflammation as well.
Anyway, we have had some good poop days, but we've also had some bad ones. The bad ones have taught us that surely Isaac has a bad and immediate reaction with soy products. We actually knew this before, but it was reaffirmed, and now we're really strict about no soy. When he had soy he really had cloudy liquidy diarrhea, in bouts that would have him up almost all the night.
He also has developed a history now with vomiting a few different times in the past month. And we don't mean vomiting just once, but vomiting uncontrollably in episodes that would keep him up all night. At this stage, we are eyeing these times of vomiting as unrelated and more like an increased susceptibility/reaction to a stomach bug. But of course, we can't help but think that this is colitis turning into Crohn's, or that maybe these are effects of medicines. His latest vomiting coincided with a nasty throat cough that afflicted Isaac this past week. Some cough/congestion medicine has helped with that and he is doing what we call fine.
On the positive side of things, all of this poop awareness has resulted in a fully potty trained boy. We are thrilled about that, of course. The transition was moreorless Isaac's doing. It seemed like especially with that streak (ha ha) of good poos, he just got it. And now he always notifies us and makes it to the bathroom, although he says poo-poo whether or not he has to pee or poop. And, also positively, we saw regular baby poop from Annie now that she's been eating solid foods. It might be a small celebration, but since we've experienced this ordeal with Isaac, we were a little concerned that she might suffer from something similar. Sure, it might be a super low occurrence, but maybe we've hit on just the specific gene balance that helps it show up.
Our diet lately? We have kept it pretty open, but open for us is not very meaty at all. Bonnie's plan, nowadays, is a diet where Wednesday is an omnivorous day. The days that start with T are vegetarian days, and the remaining days are vegan days. We want to get back into keeping a strict in/out GI diary, and that way we might track anything related to animal protein. We have been doing more with probiotics regularly these past couple weeks, and it seems like we can owe a lot of gut health to that.
So shortly after those signs he started to have some bad diarrhea and blood showing up. Intent to nip the problem in the bud, we got him in right away to the doctor, who prescribed a real steroid treatment that we should expect to adhere to for weeks. Well, we were thinking that it's probably best. But what was in store was more frustration.
Isaac responded to the steroids maybe, but not immediately, and not so fully as what we saw previously. Even after three weeks of steroids we couldn't really say that his poop was "better", although it definitely wasn't bloody and it did seem to be more acceptable than unacceptable (acceptable is formed but soft--we call it "soft serve" frankly--that may break apart some in water, but unacceptable is more liquidy or formed stool that immediately breaks apart completely when it hits the water). At that point the doctor said that we should continue for another three weeks and see if we can learn anything.
His sed rates for these times showed curious things. Sed rates measure the sedimentation rates of eurythrocytes in blood, and it is a good indicator of inflammation. Isaac gets blood drawn every time, but the blood they tell us about was "last time's" blood. So we have an unfortunate lag between real time and inflammation indicators. Anyway, I can't remember the sed details except that they were a little baffling, and the doctor explained that sometimes sed rates lag behind inflammation as well.
Anyway, we have had some good poop days, but we've also had some bad ones. The bad ones have taught us that surely Isaac has a bad and immediate reaction with soy products. We actually knew this before, but it was reaffirmed, and now we're really strict about no soy. When he had soy he really had cloudy liquidy diarrhea, in bouts that would have him up almost all the night.
He also has developed a history now with vomiting a few different times in the past month. And we don't mean vomiting just once, but vomiting uncontrollably in episodes that would keep him up all night. At this stage, we are eyeing these times of vomiting as unrelated and more like an increased susceptibility/reaction to a stomach bug. But of course, we can't help but think that this is colitis turning into Crohn's, or that maybe these are effects of medicines. His latest vomiting coincided with a nasty throat cough that afflicted Isaac this past week. Some cough/congestion medicine has helped with that and he is doing what we call fine.
On the positive side of things, all of this poop awareness has resulted in a fully potty trained boy. We are thrilled about that, of course. The transition was moreorless Isaac's doing. It seemed like especially with that streak (ha ha) of good poos, he just got it. And now he always notifies us and makes it to the bathroom, although he says poo-poo whether or not he has to pee or poop. And, also positively, we saw regular baby poop from Annie now that she's been eating solid foods. It might be a small celebration, but since we've experienced this ordeal with Isaac, we were a little concerned that she might suffer from something similar. Sure, it might be a super low occurrence, but maybe we've hit on just the specific gene balance that helps it show up.
Our diet lately? We have kept it pretty open, but open for us is not very meaty at all. Bonnie's plan, nowadays, is a diet where Wednesday is an omnivorous day. The days that start with T are vegetarian days, and the remaining days are vegan days. We want to get back into keeping a strict in/out GI diary, and that way we might track anything related to animal protein. We have been doing more with probiotics regularly these past couple weeks, and it seems like we can owe a lot of gut health to that.
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.
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