And now we enter that phase of hope that everything will remain as it is or better yet, get better. Other than Isaac's sulfasalazine and azathioprine (and folic acid and probiotics), he and his colon are living a healthy life.
Some of our latest exploits can be found on Bonnie's we talk dinosaur blog. What we're looking forward to this weekend is our first boys-only camping trip into the wilderness of a yet-to-be-determined Texas state park.
One thing I want to mention as a sort of follow up to our last post is that when everything is going well with us, we really appreciate it. Our prayers and thoughts remain with those with IBD who are suffering, that each sufferer finds remission or at least some relief or peace soon!
Also, for those of you just stumbling on some IBD blogs, I point you to the right of my blogspot, where you can find other IBD stories which may interest you.
Showing posts with label colitis toddler. Show all posts
Showing posts with label colitis toddler. Show all posts
Wednesday, July 20, 2011
Monday, June 20, 2011
writing about writing
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.
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.
Friday, May 27, 2011
pharmacy fun
Today we drove around and around looking for our new pharmacy, the Inwood Pharmacy in north Houston. We had neglected to grab the phone before we left, so we were just going by our memory of where it appeared to be on google maps. But no pharmacy was evident. I stopped at a place which was part of a hospital campus in order to ask about where this pharmacy might be. And lo and behold, there was the Inwood Pharmacy tucked inside, with no signage whatsoever outside its doors.
But let me tell you--we are happy to have found it. The owner is the pharmacist, who will compound our special drugs, and he filled our first prescription in a timely manner. The place is small and exactly how a pharmacy should be, where you talk to the pharmacist and know who is filling your prescriptions.
We switched from chain pharmacies after having bad luck with the Walgreens near us. Not all Walgreens pharmacies compound drugs, first of all, there are only a few in Houston. One was pretty close to where we live, but we kept running into problems. First it was that they don't compound on the weekend, but they neglected to tell us. Next, when we called in our refill early so they could compound it before the weekend, it wasn't early enough. Finally, there was just no good reason, and they had our drugs ready a couple days later than we expected. In Isaac's case, we don't want to miss doses, especially multiple doses. And he runs out of the medicine pretty quick, because he has 7mL three times a day.
Our new pharmacist, Vince, gave us two nice sized bottles so that we won't have to keep coming back so often. And he was straightforward about when he could get the drug components and when we would have it completed. We like that. On a day like today, when we make sure to fill something before a long weekend, it is good to know that we have somebody reliable we can count on.
Having said all that, if Isaac starts to relapse again, Bonnie and I are on the same page about trying the more potent VSL probiotics and giving probiotics and diet a good long run before we resort to steroids. We didn't get too far in slowly introducing the SCD (Specific Carb Diet), where we decided to eliminate first sugar, then lactose completey (he already doesn't have much dairy at all), gluten. In fact, he's cleared up really well now and having good old regular poop and everything seems hunky dory. Of course we think, well, this is the good thing about the steroids, bad as I believe them to be... but of course, we don't really know that he wouldn't naturally get to this healed point without--or that anything else we might do might bring about a similar result.
We have these facts. Isaac was relapsed down to stools with blood (albeit small amounts) daily. (This started with the soy incident at the end of March. And even though we got back to our good soy free, vegetarian-no-dairy-milk diet). After 11 days he started daily doses of the steroid medication prednisolone. A couple days later he also got a water cleansing enema. After five days of the steroids we saw the last blood in his stool. But except for a few good starts (sometimes a bowel movement would start of like a "perfect 3" and then degrade to a watery 7) they remained smelly (We label the smell "UC smell" because it's become distinctive), and generally unhealthy for about 10 days after taking steroids. At that point, the good stools took over and have seemed to improve in consistency and regularity. So, anyway, 17 days of stool with blood.
My my, I've got to get less wordy.
But let me tell you--we are happy to have found it. The owner is the pharmacist, who will compound our special drugs, and he filled our first prescription in a timely manner. The place is small and exactly how a pharmacy should be, where you talk to the pharmacist and know who is filling your prescriptions.
We switched from chain pharmacies after having bad luck with the Walgreens near us. Not all Walgreens pharmacies compound drugs, first of all, there are only a few in Houston. One was pretty close to where we live, but we kept running into problems. First it was that they don't compound on the weekend, but they neglected to tell us. Next, when we called in our refill early so they could compound it before the weekend, it wasn't early enough. Finally, there was just no good reason, and they had our drugs ready a couple days later than we expected. In Isaac's case, we don't want to miss doses, especially multiple doses. And he runs out of the medicine pretty quick, because he has 7mL three times a day.
Our new pharmacist, Vince, gave us two nice sized bottles so that we won't have to keep coming back so often. And he was straightforward about when he could get the drug components and when we would have it completed. We like that. On a day like today, when we make sure to fill something before a long weekend, it is good to know that we have somebody reliable we can count on.
Having said all that, if Isaac starts to relapse again, Bonnie and I are on the same page about trying the more potent VSL probiotics and giving probiotics and diet a good long run before we resort to steroids. We didn't get too far in slowly introducing the SCD (Specific Carb Diet), where we decided to eliminate first sugar, then lactose completey (he already doesn't have much dairy at all), gluten. In fact, he's cleared up really well now and having good old regular poop and everything seems hunky dory. Of course we think, well, this is the good thing about the steroids, bad as I believe them to be... but of course, we don't really know that he wouldn't naturally get to this healed point without--or that anything else we might do might bring about a similar result.
We have these facts. Isaac was relapsed down to stools with blood (albeit small amounts) daily. (This started with the soy incident at the end of March. And even though we got back to our good soy free, vegetarian-no-dairy-milk diet). After 11 days he started daily doses of the steroid medication prednisolone. A couple days later he also got a water cleansing enema. After five days of the steroids we saw the last blood in his stool. But except for a few good starts (sometimes a bowel movement would start of like a "perfect 3" and then degrade to a watery 7) they remained smelly (We label the smell "UC smell" because it's become distinctive), and generally unhealthy for about 10 days after taking steroids. At that point, the good stools took over and have seemed to improve in consistency and regularity. So, anyway, 17 days of stool with blood.
My my, I've got to get less wordy.
Monday, May 9, 2011
shocked in spite of myself
We are continuing meds, and I have to repeat what I mentioned to Bonnie the other day, which is that I'm really surprised--shocked even--that our entire response to Isaac's condition is going on the way it is. What I mean by this, mainly, is that I am generally so pro-natural if not anti-pharmaceutical when it comes to treatments. Yet here we are finishing our fourth week of our second (or third--if you count that one isolated week) round of steroids since October, and Isaac is now taking a second drug--this one suppresses the body's immune response.
What I wish? I think we could effectively test out a few treatments which involve mostly diet and probiotics. Actually, by doing this alongside of what the doctor orders, I think we have found some good information about some of what affects Isaac. We have thought, from time to time, that we're onto something with probiotics we give him, but we don't have good evidence of that. We are going to get some strong concentrated probiotics to help alter Isaac's natural intestinal microbiome, but as he seems to be in a more "healthier" stage now, it may only help loosely point to what is/isn't effective. There are also many things out there that our doctor is shy about. Like probiotic enemas, and bacteriotherapy (an infusion of a donor's healthy stool to help adjust the culture of Isaac's gut).
So why is our doctor about these treatments and not shy about pushing expensive carcinogenic drugs to our two year old, talking about them as a pathway to probable surgery? One reason, of course, is the trend of research and science behind health care. A lot of research gets funded for things that make money. And simultaneously, the trends of health care point to miracle pills or substances which can treat symptoms and/or fix conditions as opposed to more mysterious treatments which contain components which are difficult to isolate and control. And that's especially true if the treatment does nothing more than encourage a body's system to do its job even though modern medicine has deemed the body's system pathological. Then there's the actual money factor, which isn't just about the science of medicine, but the actual money driven aspect of what pays and what doesn't. These expensive medicines Isaac takes help, in a twisted short-term way, to drive our economy. A cheap fecal transplant only helps the economy in the long run. I really hate that analysis, but that's our health care system for you.
I got a good private response from a reader about a situation similar to ours, where this family's toddler was diagnosed at a similar time. Their response to the diagnosis has leaned toward the nonpharmeceutical. One difference that Bonnie points out is that Isaac's case seems more moderate-severe whereas the reader's child's situation may be more mild-moderate, but in both cases we have diarrhea and blood. And in both cases, honestly, it seems like the outcome has been about the same. Some improvement, but some "relapse" in our case with drugs, and the same to be said for the nonpharmaceutical approach. So I ask myself, what are we doing exposing Isaac to months and months of steroids, for the same results we can get by going with probiotics and dietary changes?!
Of course you may anticipate the answer. We don't want Isaac to miss out on growth spurts. we don't want scar tissue to develop in his guts which may lead to surgery sooner rather than later. And we don't know--maybe without drugs, he would have needed surgery by now.
Anyway, this is my struggle. We'll probably wrestle some more, see how the VSL#3 goes, continue little by little finding more out with our dietary/stool/symptom diary, and who knows. I would still be thrilled to work with a scientist/doctor who wants to investigate this bacteriotherapy (I realize now that I have yet to write a good entry for the fecal transplant).
The poop scoop: Isaac has continued to poop pretty well, going once a day or once in two days. His last stool was a 4-5, but he also had an ideal 3-4 the time before that.
What I wish? I think we could effectively test out a few treatments which involve mostly diet and probiotics. Actually, by doing this alongside of what the doctor orders, I think we have found some good information about some of what affects Isaac. We have thought, from time to time, that we're onto something with probiotics we give him, but we don't have good evidence of that. We are going to get some strong concentrated probiotics to help alter Isaac's natural intestinal microbiome, but as he seems to be in a more "healthier" stage now, it may only help loosely point to what is/isn't effective. There are also many things out there that our doctor is shy about. Like probiotic enemas, and bacteriotherapy (an infusion of a donor's healthy stool to help adjust the culture of Isaac's gut).
So why is our doctor about these treatments and not shy about pushing expensive carcinogenic drugs to our two year old, talking about them as a pathway to probable surgery? One reason, of course, is the trend of research and science behind health care. A lot of research gets funded for things that make money. And simultaneously, the trends of health care point to miracle pills or substances which can treat symptoms and/or fix conditions as opposed to more mysterious treatments which contain components which are difficult to isolate and control. And that's especially true if the treatment does nothing more than encourage a body's system to do its job even though modern medicine has deemed the body's system pathological. Then there's the actual money factor, which isn't just about the science of medicine, but the actual money driven aspect of what pays and what doesn't. These expensive medicines Isaac takes help, in a twisted short-term way, to drive our economy. A cheap fecal transplant only helps the economy in the long run. I really hate that analysis, but that's our health care system for you.
I got a good private response from a reader about a situation similar to ours, where this family's toddler was diagnosed at a similar time. Their response to the diagnosis has leaned toward the nonpharmeceutical. One difference that Bonnie points out is that Isaac's case seems more moderate-severe whereas the reader's child's situation may be more mild-moderate, but in both cases we have diarrhea and blood. And in both cases, honestly, it seems like the outcome has been about the same. Some improvement, but some "relapse" in our case with drugs, and the same to be said for the nonpharmaceutical approach. So I ask myself, what are we doing exposing Isaac to months and months of steroids, for the same results we can get by going with probiotics and dietary changes?!
Of course you may anticipate the answer. We don't want Isaac to miss out on growth spurts. we don't want scar tissue to develop in his guts which may lead to surgery sooner rather than later. And we don't know--maybe without drugs, he would have needed surgery by now.
Anyway, this is my struggle. We'll probably wrestle some more, see how the VSL#3 goes, continue little by little finding more out with our dietary/stool/symptom diary, and who knows. I would still be thrilled to work with a scientist/doctor who wants to investigate this bacteriotherapy (I realize now that I have yet to write a good entry for the fecal transplant).
The poop scoop: Isaac has continued to poop pretty well, going once a day or once in two days. His last stool was a 4-5, but he also had an ideal 3-4 the time before that.
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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