Weblogs are a good way to share experience. As for IBD in our home, I am encouraged by readers who write, readers who only read, and other writers who don't even read. Lately we were included in a list of IBD blogs and websites. Also, I am continually reading about old patients, new patients, stories new and old, and anything else IBD in forums and in other places which list randomly 40 at a time on the right side of my blog....
I definitely recommend blogging for the journal aspect, for connecting with others in similar situations, and for helping others down the road. As you share your experience, it can really help someone else in a similar situation.
We are still weaning Isaac off of the prednisolone. And everything seems to be going just fine as it has been for a while....
Last week was Vacation Bible School at our church, and Isaac and his brother had a good time each day. Yesterday, they helped lead some of their songs during church, and how delightful it was to see little Isaac doing his body movements and gestures for the songs... Actually I had quite a moment, since one of their songs (How Great Thou Art) was one of my late grandmother's favorites. I am a bridge between her and them, and maybe it is all but impossible to fully relate the connection, but how delightful to see her progeny celebrating the same song that moved her decades ago.
Showing posts with label toddler diarrhea. Show all posts
Showing posts with label toddler diarrhea. Show all posts
Monday, June 20, 2011
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 6, 2011
IBD around the world
I got curious about the incidence of IBD in various countries. Immediately google delivered:
abstracts of a few journal articles about IBD in various countries
Here it looks like as you can expect. Lots of mystery and different conclusions where IBD appears and even how it appears. Overall it looks like a disease of affluence which is impacted at least as much by environmental factors (like diet) as genetics.
One of the obvious problems, however, is the idea that many IBD patients can go a lifetime without medical treatment or diagnosis. And since it is a personal and sort of taboo matter, and since nobody really wants to be probed, I imagine it tends to be under-represented in studies. In order to get more statistics, I'd love to be in charge of large broad-based survey studies of adults with ulcers, asthma, allergies, arthritis, and various GI pathologies, asking questions such as "Can you verify if you had excessive diarrhea as a toddler? Bloody stool ever?" and so on.
Then, continuing systematically, we want a giant spreadsheet of patients organizable by symptoms, indications, diagnoses, ages, gender, family history, treatments that work, treatments that don't work, allergies, and you name it. And then we try to sift out various types of IBD and see what patterns we can find. Or even if we do some statistical analysis on the hundreds of thousands of US patients. Am I too impatient here to think that at least we can gather up patients who react/don't react similarly, and see if we can get to some physiological tendencies/causes?
I know bright scientific minds are on this, but now that it has hit home so closely, I want to be closer to the cutting edge of research I guess.
abstracts of a few journal articles about IBD in various countries
Here it looks like as you can expect. Lots of mystery and different conclusions where IBD appears and even how it appears. Overall it looks like a disease of affluence which is impacted at least as much by environmental factors (like diet) as genetics.
One of the obvious problems, however, is the idea that many IBD patients can go a lifetime without medical treatment or diagnosis. And since it is a personal and sort of taboo matter, and since nobody really wants to be probed, I imagine it tends to be under-represented in studies. In order to get more statistics, I'd love to be in charge of large broad-based survey studies of adults with ulcers, asthma, allergies, arthritis, and various GI pathologies, asking questions such as "Can you verify if you had excessive diarrhea as a toddler? Bloody stool ever?" and so on.
Then, continuing systematically, we want a giant spreadsheet of patients organizable by symptoms, indications, diagnoses, ages, gender, family history, treatments that work, treatments that don't work, allergies, and you name it. And then we try to sift out various types of IBD and see what patterns we can find. Or even if we do some statistical analysis on the hundreds of thousands of US patients. Am I too impatient here to think that at least we can gather up patients who react/don't react similarly, and see if we can get to some physiological tendencies/causes?
I know bright scientific minds are on this, but now that it has hit home so closely, I want to be closer to the cutting edge of research I guess.
Thursday, October 28, 2010
UC
Diagnosis: ulcerative colitis. Did you know its incidence is around 3 in one million for his age group? So he is one of the about 15 kiddos here in Houston with similar conditions. Actually, they have a center here for families with kids with IBD. That's nice. I think we'll get involved.
The doctor is hopeful, and so are we, that he will respond positively to an anti-inflammatory medication he will presumably take for the rest of his life. We'll keep you posted.
The doctor is hopeful, and so are we, that he will respond positively to an anti-inflammatory medication he will presumably take for the rest of his life. We'll keep you posted.
Sunday, October 10, 2010
Poop Inspection
One of the main motivations for having a separate IBD blog is to report such matters as poop inspection. I always think it's strange and a little neurotic when I hear the fecally concerned reporting such things as frequency and details of bowel movements concerning onseself, each other, or of pets. But here I was this morning, rinsing off a diaper this morning investigating the vegetable contents and wondering, "now, what is that?" and so on. Normally, who would share this? And normally, who would want to read this? But when it comes to chronic bowel disease, or regarding colon health for anybody curious about making changes in their health, "poop talk" is no stranger.
So nevermind football. Let's talk stool. With Isaac on an elimination diet, it is easier to tell if we've got an added irritation. In theory. What it really means is that our investigation is something short of a crap shoot. We have noticed an improvement this last week, and we are mostly on the basics, though we are including wheat, and lately have also included a little chicken meat and eggs the last couple days. The animal proteins are a lot to add, and if this morning is an indication of what may come, we may re-restrict those. Actually, I don't know why we are feeding him anything animal based at all. From some literature, you see a high incidence of bowel disease where meat is a big part of diet. I don't think that meat is responsible for Isaac's condition, but it seems to me easily feasible that a mostly meat diet helped activate it. He's always been a little meat eater (since age 1), and honestly, part of the reason we are feeding him chicken is because he will readily eat it.
Bonnie reminded me just now, the other reason is that we are feeding him chicken is because he is not only on an elimination diet, but also low fiber, and meat offers him some nutrition in addition to the flour tortillas and rice he's eating.
It's hard to get him to eat things, like soft cooked vegetables and canned soft fruit. Or yogurt or quinoa. Any ideas? We can't seem to plea with him, trick him with smoothies, or hide it. Maybe we'll try pizza with mashed vegetables in the tomato sauce.
So this week we learned to really hold off on the fiber during a flare-up. We were feeding him a lot of rice and beans because he loves it, it's a good complete protein source, and it's plant based. But pushing out the fiber puts unwanted stress on his inflamed bowel walls.
Colonics. Let me report more about this. Over the past months Isaac's defecation was tending towards hour long episodes of multiple bowels that would clean out everything in there, and then the blood and mucus caused by the scouring. During that hour, Isaac was, especially lately, evidently experiencing more pain or cramping and at the end it seemed like what I want to call dry heaves on the other end of the GI tract. Not at all excited to try out enemas ever, much less with my son, I crossed the line and did it, mostly because if I were experiencing what he seemed to be experiencing, I would have wanted to try it--even if it offered only a temporary relief. Get something in there to give the bowels something to squeeze out, as well as helping rinse out the bowels with something pH balanced.
In two such episodes, upon administering these enemas, the episode ceased. What I mean is that after the post-enema void, Isaac's "hour of misery" ended, and no more poops. Plus, we noticed the next poops were not bloody. In the last case, he actually went 40 hours after without passing significant blood, and since then, he hasn't had the bloody mucus, or a single 'one hour episode' as described above. Before last week and that first enema, he was having those hour episodes twice daily. Once in the morning, voiding dinner from the night before, and once in the evening, voiding breakfast.
Now, the enemas weren't the only factor that changed this week (But I liked the immediate observations from the enemas, I must say). The other major factors were the dietary changes--going to the elimination and low fiber diet, which for most of the week were plant based, although recently we introduced some animal protein foods. The other changes were some supplements. B vitamins, probiotics in a pill (acidophilus), and an amino acid L-glutamine which we decapsulate and dissolve in Gatorade. And I guess I can't leave out football, because that was some game against the Gators last night.
Our next goal is to get probiotics in capsules that we can hopefully give Isaac more easily. The pills we have just don't go down easily, and Friday it ended up with a living room full of vomit. It's not a complication we want to add to a troubled GI tract.
So nevermind football. Let's talk stool. With Isaac on an elimination diet, it is easier to tell if we've got an added irritation. In theory. What it really means is that our investigation is something short of a crap shoot. We have noticed an improvement this last week, and we are mostly on the basics, though we are including wheat, and lately have also included a little chicken meat and eggs the last couple days. The animal proteins are a lot to add, and if this morning is an indication of what may come, we may re-restrict those. Actually, I don't know why we are feeding him anything animal based at all. From some literature, you see a high incidence of bowel disease where meat is a big part of diet. I don't think that meat is responsible for Isaac's condition, but it seems to me easily feasible that a mostly meat diet helped activate it. He's always been a little meat eater (since age 1), and honestly, part of the reason we are feeding him chicken is because he will readily eat it.
Bonnie reminded me just now, the other reason is that we are feeding him chicken is because he is not only on an elimination diet, but also low fiber, and meat offers him some nutrition in addition to the flour tortillas and rice he's eating.
It's hard to get him to eat things, like soft cooked vegetables and canned soft fruit. Or yogurt or quinoa. Any ideas? We can't seem to plea with him, trick him with smoothies, or hide it. Maybe we'll try pizza with mashed vegetables in the tomato sauce.
So this week we learned to really hold off on the fiber during a flare-up. We were feeding him a lot of rice and beans because he loves it, it's a good complete protein source, and it's plant based. But pushing out the fiber puts unwanted stress on his inflamed bowel walls.
Colonics. Let me report more about this. Over the past months Isaac's defecation was tending towards hour long episodes of multiple bowels that would clean out everything in there, and then the blood and mucus caused by the scouring. During that hour, Isaac was, especially lately, evidently experiencing more pain or cramping and at the end it seemed like what I want to call dry heaves on the other end of the GI tract. Not at all excited to try out enemas ever, much less with my son, I crossed the line and did it, mostly because if I were experiencing what he seemed to be experiencing, I would have wanted to try it--even if it offered only a temporary relief. Get something in there to give the bowels something to squeeze out, as well as helping rinse out the bowels with something pH balanced.
In two such episodes, upon administering these enemas, the episode ceased. What I mean is that after the post-enema void, Isaac's "hour of misery" ended, and no more poops. Plus, we noticed the next poops were not bloody. In the last case, he actually went 40 hours after without passing significant blood, and since then, he hasn't had the bloody mucus, or a single 'one hour episode' as described above. Before last week and that first enema, he was having those hour episodes twice daily. Once in the morning, voiding dinner from the night before, and once in the evening, voiding breakfast.
Now, the enemas weren't the only factor that changed this week (But I liked the immediate observations from the enemas, I must say). The other major factors were the dietary changes--going to the elimination and low fiber diet, which for most of the week were plant based, although recently we introduced some animal protein foods. The other changes were some supplements. B vitamins, probiotics in a pill (acidophilus), and an amino acid L-glutamine which we decapsulate and dissolve in Gatorade. And I guess I can't leave out football, because that was some game against the Gators last night.
Our next goal is to get probiotics in capsules that we can hopefully give Isaac more easily. The pills we have just don't go down easily, and Friday it ended up with a living room full of vomit. It's not a complication we want to add to a troubled GI tract.
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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