This week I just need to direct you to Bonnie's we talk dinosaur blog. It talks about Isaac, like usual, but specifically about his weight, which is what is on our minds these days. He is still a healthy weight, but he hasn't gained weight really, in the past 10 months.
We are in Louisiana now, visiting grandparents and Aunt Liz before the school year picks up again in Houston. Isaac's activities today included toy time, watching brother with his baking soda and vinegar rocket, some computer games at pbskids.org, book time, some movie time with Jake and the Neverland Pirates, bubbles and water fun outside, and falling asleep in Aunt Liz's bed.
Showing posts with label ibd toddler. Show all posts
Showing posts with label ibd toddler. Show all posts
Sunday, August 7, 2011
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, 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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