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 colitis. Show all posts
Showing posts with label colitis. 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.
 |
| 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.
Wednesday, July 6, 2011
chronic amplification
Having a young tot with a chronic disease seems to amplify both the good and the bad. We probably appreciate Isaac's health and milestones more than we might otherwise, but when something new and scary happens we're also all the more concerned. The concern of this week involves what we are going to call a small blood blister on his butt. And of course, we were initally bombarded with all the feelings of fistulae, disease advancement, undiagnosable problems, surgery. But then we took a step back, took some magic breaths, googled for a while, and decided not to be so worried about it for now. Slowing down the alarm bells reminds us to take it easy and of course report it to the doctor. It's not like all of the sudden Isaac is having pain or has any indications that anything is wrong. Of course it's good to notice change, so we'll keep an eye on things and see how it goes.
Everything is going great as far as poop goes. We are just ready to finish up with this long steroid weaning. And for that the doctor is dragging his feet a little to make sure the azathioprine (Imuran) levels are at a therapeutic level for a human Isaac's size. His prednisolone dose is small, but it's still there. And meanwhile he's growing an excess of fuzzy body and facial hair!
And that reminds me, we have tended to downgrade our strict attentiveness to soy. Since Isaac got this last flare under control he has been exposed to definite traces-of-soy foods without any noticable effect. When we get off the steroids completely we will surely play it safe, especially for the first months, but we might be more skeptical than before that it is soy and soy alone that triggers the flare-up. I think the model in our minds is something more like: Isaac's guts have some imbalance, and any little thing is bound to trigger the flare-up at that time. And maybe it was traces of soy, but other times soy might be fine for him, and it might just as well been other grains, dairy, meat, or anything really.
Everything is going great as far as poop goes. We are just ready to finish up with this long steroid weaning. And for that the doctor is dragging his feet a little to make sure the azathioprine (Imuran) levels are at a therapeutic level for a human Isaac's size. His prednisolone dose is small, but it's still there. And meanwhile he's growing an excess of fuzzy body and facial hair!
And that reminds me, we have tended to downgrade our strict attentiveness to soy. Since Isaac got this last flare under control he has been exposed to definite traces-of-soy foods without any noticable effect. When we get off the steroids completely we will surely play it safe, especially for the first months, but we might be more skeptical than before that it is soy and soy alone that triggers the flare-up. I think the model in our minds is something more like: Isaac's guts have some imbalance, and any little thing is bound to trigger the flare-up at that time. And maybe it was traces of soy, but other times soy might be fine for him, and it might just as well been other grains, dairy, meat, or anything really.
Saturday, April 9, 2011
the latest on the latest
It's time for the follow-up to report on how Isaac's week was following his last bloody stools last week. As a recap, we guessed it was traces of soy in some new toasted oat cereal, cut it out of the diet, and then waited to see what happened. We cut out the new cereal after Friday, and Saturday he still had a little bloogie at the end of his bowel movement.
Sunday was immediately better, blood-wise, although the poop was still a 6,7 Bristol-wise. He had a second bowel movement that was hardly worth mentioning--just two little turds, except that they were small little #5 UC turds, which are more like, I don't know, small soft squeezed pooplets.
(If you think we need an exact poop vocabulary, I agree and you're probably right. Here's something the Japanese classify:
unpi 「うんぴ」 : Diarrheal stool. Could be connected to overeating, having a cold, or stress. It is usually a yellowish-color and it has a very strong smell.
unnyo 「うんにょ」 : Soft and tender poop, but not diarrehea. It comes out when you are feel some indigestion. Yellow-ish or light brown in color.
unchi 「うんち」 : Nice poop. It comes out when you’ve been eating healthy balanced meals. It has a clean brown color and doesn’t smell very much.
ungo 「うんご」 : Comes out when you’ve not been eating enough vegetables, and you’re probably constipated when you squeeze out an ungo. Ungo is dark black and really stinky.)
Monday also had two bowel movements. Both were 5,6s. The first was bloodless, but the second had some blood. Tuesday we also saw some blood and a total 7 diarrhea stool. We also started back in with some L-glutamine and acidopholus on Tuesday (before that Isaac was having only sacchromyces boulardii every day in addition to his prescribed sulfasalazine) On Wednesday, an improved bowel movement, with the tiniest fleck of blood visible. Thursday, also blood just visible. Friday, the best stool in a week, #3 at the start, but the movement ended up with a #6, but no blood. And today he had two pretty bad 6,7 stools, but no blood at all to be seen.
Also, about last night and this morning, Isaac indicated he had a belly ache. Since he almost never expresses this, we take it pretty seriously, although it seemed to resolve with a little food and drink.
To our dismay, this evening Isaac found little sister's cup of honey oaties (the cereal with the traces of soy that has seemed to start this episode) and helped himself to four of them before we stopped him. It illustrates some of the challenge of having soy products in the home and also of reasoning with a two year old about what he can and cannot eat, and of course, about parenting in general.
Our take? Well, my thoughts are that we have another flare-up of inflammation triggered by the soy food. Although we removed the soy from exposure in his gut, I think his inflamed response has lingered but is in the process of healing.
I am looking into the amino acids of glutamine and lysine. Lysine has really seemed to help quickly resolve mouth ulcers I've had in the past, and it seems like these free form amino acids are reported to do well in the gut. We'll chat about that with the doctor at our Monday appointment.
For some reason we had also slacked off on the sacchromyces capsules for the three days leading up to this episode.
We are hoping that this is positively indicating that we can handle small reactions and that Isaac's body will respond well if not normally in order to "get back on track". However, it has been a week, and we still had bad stools today, even if they aren't bloody, so we'll continue with our observation over the next week and see if we can't give a fuller report.
We also have a doctor's appointment on Monday. Hopefully he will be of similar mind. He doesn't have much of a response whenever we mention that we've linked Isaac's bowel health to soy avoidance.
And to be fair, our soy observations may be only part of a big picture we have yet to realize. This is another item we've been taking seriously this past week. Partly because an author of another UC blog we follow died this last month, bringing to the forefront of our mind the full threat of the mortality of IBD. And this whole last episode made us really second guess... "traces of soy really has such an effect on Isaac's bowels?" "Okay, how long is he really going to make it before stronger meds and/or surgery, etc....?"
Sunday was immediately better, blood-wise, although the poop was still a 6,7 Bristol-wise. He had a second bowel movement that was hardly worth mentioning--just two little turds, except that they were small little #5 UC turds, which are more like, I don't know, small soft squeezed pooplets.
(If you think we need an exact poop vocabulary, I agree and you're probably right. Here's something the Japanese classify:
unpi 「うんぴ」 : Diarrheal stool. Could be connected to overeating, having a cold, or stress. It is usually a yellowish-color and it has a very strong smell.
unnyo 「うんにょ」 : Soft and tender poop, but not diarrehea. It comes out when you are feel some indigestion. Yellow-ish or light brown in color.
unchi 「うんち」 : Nice poop. It comes out when you’ve been eating healthy balanced meals. It has a clean brown color and doesn’t smell very much.
ungo 「うんご」 : Comes out when you’ve not been eating enough vegetables, and you’re probably constipated when you squeeze out an ungo. Ungo is dark black and really stinky.)
Monday also had two bowel movements. Both were 5,6s. The first was bloodless, but the second had some blood. Tuesday we also saw some blood and a total 7 diarrhea stool. We also started back in with some L-glutamine and acidopholus on Tuesday (before that Isaac was having only sacchromyces boulardii every day in addition to his prescribed sulfasalazine) On Wednesday, an improved bowel movement, with the tiniest fleck of blood visible. Thursday, also blood just visible. Friday, the best stool in a week, #3 at the start, but the movement ended up with a #6, but no blood. And today he had two pretty bad 6,7 stools, but no blood at all to be seen.
Also, about last night and this morning, Isaac indicated he had a belly ache. Since he almost never expresses this, we take it pretty seriously, although it seemed to resolve with a little food and drink.
To our dismay, this evening Isaac found little sister's cup of honey oaties (the cereal with the traces of soy that has seemed to start this episode) and helped himself to four of them before we stopped him. It illustrates some of the challenge of having soy products in the home and also of reasoning with a two year old about what he can and cannot eat, and of course, about parenting in general.
Our take? Well, my thoughts are that we have another flare-up of inflammation triggered by the soy food. Although we removed the soy from exposure in his gut, I think his inflamed response has lingered but is in the process of healing.
I am looking into the amino acids of glutamine and lysine. Lysine has really seemed to help quickly resolve mouth ulcers I've had in the past, and it seems like these free form amino acids are reported to do well in the gut. We'll chat about that with the doctor at our Monday appointment.
For some reason we had also slacked off on the sacchromyces capsules for the three days leading up to this episode.
We are hoping that this is positively indicating that we can handle small reactions and that Isaac's body will respond well if not normally in order to "get back on track". However, it has been a week, and we still had bad stools today, even if they aren't bloody, so we'll continue with our observation over the next week and see if we can't give a fuller report.
We also have a doctor's appointment on Monday. Hopefully he will be of similar mind. He doesn't have much of a response whenever we mention that we've linked Isaac's bowel health to soy avoidance.
And to be fair, our soy observations may be only part of a big picture we have yet to realize. This is another item we've been taking seriously this past week. Partly because an author of another UC blog we follow died this last month, bringing to the forefront of our mind the full threat of the mortality of IBD. And this whole last episode made us really second guess... "traces of soy really has such an effect on Isaac's bowels?" "Okay, how long is he really going to make it before stronger meds and/or surgery, etc....?"
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, 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.
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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