Camryn's doctor sure would like to collect that additional data from a colonoscopy, wouldn't she. If Camryn is not better in a month, a more practical choice would be to cut dairy and soy from her diet, rather than undergo a colonoscopy. If Camryn already hates hospitals, she will learn to truly despise them, if she has to go through a colonoscopy. In fact, she could develop an irrational fear of them, (though sometimes I suspect an irrational fear of hospitals is a perfectly proper attitude. We have good reason to fear them).
You're right about me. LOL. As the song goes, You don't tug on Superman's cape - You don't spit into the wind - You don't pull the mask off the old Lone Ranger, and you don't question a pathologist's diagnosis. So why does Camryn's GI doc keep questioning it? The report that you posted is as clear as any I've ever seen, and really doesn't leave any room for argument or doubt. Camryn clearly has LC.
A fluke? I really don't believe that diagnoses based on microscopic examination of biopsy samples can ever be classified as flukes - they are either right or wrong, based on the pathologists interpretation of what the slides present, and the evidence is pretty clear in this case.
I'm certainly not a doctor, so I'm talking out of school to disagree with one, but based on the list of practical medications available to treat MC, it makes very little difference whether or not the inflammation is confined to the sigmoid region of the colon, or scattered throughout it, the inflammation pattern will likely not affect the choice of meds. Additionally, based on typical histories, it's almost a sure thing that patches of inflammation would be found scattered throughout Camryn's colon.
I have to go load some corn for a customer - I'll add more later.
Tex
My 2 Year Old was just diagnosed with LC :(
Moderators: Rosie, JFR, Gabes-Apg, grannyh, Mars, starfire, Polly, Joefnh
Sara,
To answer your question about periods of no D:
Some days I have D, some days I have perfectly normal BMs and some days I have some of each. I believe it depends upon the food I'm eating. After 14 months, I'm still trying to figure it out, but I'm getting closer. I've managed to get down to 1 Entocort pill per day. I don't take anything else for the LC.
I've been posting my progress in a thread called "Weaning Off Entocort" which you can read here:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=6730
If you go to the last couple of pages, you'll see that it took me a year to realize that green beans were problematic. Now that I've eliminated the green beans, I'm having the same ups and downs that I did on 2 Entocort pills per day. Since I'm still having issues, I'm still eliminating foods from my diet to find the culprit.
Gloria
To answer your question about periods of no D:
Some days I have D, some days I have perfectly normal BMs and some days I have some of each. I believe it depends upon the food I'm eating. After 14 months, I'm still trying to figure it out, but I'm getting closer. I've managed to get down to 1 Entocort pill per day. I don't take anything else for the LC.
I've been posting my progress in a thread called "Weaning Off Entocort" which you can read here:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=6730
If you go to the last couple of pages, you'll see that it took me a year to realize that green beans were problematic. Now that I've eliminated the green beans, I'm having the same ups and downs that I did on 2 Entocort pills per day. Since I'm still having issues, I'm still eliminating foods from my diet to find the culprit.
Gloria
You never know what you can do until you have to do it.
Camryn's Mommy,
To continue:
The AB stands for antibodies. The parietal cells, (in the stomach), secrete intrinsic factor and stomach acid. Intrinsic factor is a glycoprotein which is necessary for the absorption of vitamin B12 in the small intestine. IOW, if intrinsic factor is not produced, the result is pernicious anemia - we have at least one member who has that condition, though I'm not sure if she produces antibodies to her parietal cells. The other two tests check for thyroid antibodies. Antithyroglobulin antibodies can damage the thyroid gland and affect its function. This test is useful in the diagnosis of thyroid autoimmune issues, and also some other disorders, such as: Hashimoto thyroiditis (an autoimmune thyroid disease), Graves disease (overactivity of the thyroid), hypothyroidism (underactivity of the thyroid), thyroid cancer, lupus, rheumatoid arthritis, autoimmune hemolytic anemia and Sjogren's syndrome. The anti-microsomal test is used to confirm the cause of thyroid problems or other autoimmune disorders. The body produces microsomal antibodies in response to microsomes escaping from damaged thyroid cells.
Eating Activa every day may be beneficial, if she is not casein intolerant.
Regarding the Imodium - it works by slowing down motility, (the peristaltic pumping action of the intestines), which will probably cause a weight increase, all right, but I'm not sure that it will be beneficial weight, since diarrhea usually exists in the first place because the body is trying to purge what it considers to be a toxic substance. Because of that fact, the use of a drug such as this can increase the risk of toxic megacolon, especially if drug-induced C. diff is a factor. Children, especially very young children, are very sensitive to the effects of Imodium, which may increase the chance of side effects during treatment. Also, Imodium may hide the symptoms of dehydration, which can result in a serious health problem with dehydration.
In addition, be aware that Imodium is an opioid receptor agonist, though it does not affect the central nervous system like other opioids. IOW, Imodium molecules do not cross the blood-brain barrier in significant amounts, so it has no analgesic properties, though it can in some cases cause physical dependence. If a child happens to have a compromised blood brain barrier, though, (as in the case of meningitis, for example), then special caution would be needed, due to increased variability of response.
That said, however, in general, Imodium is a relatively save medication, that causes no problems for most adults, but, of course, we're talking about a 2-year old here, not an adult. Polly might have some thoughts on the relative safety for use with kids in that age range.
The fact that for all those doctors at CHOP, they have seen only two cases of MC in their entire careers, and none in children, does not speak well for their ability to treat this disease. On this board alone, we have seen at least a couple hundred cases, and I can recall at least three members who registered here, with diagnosed cases of MC in children, (not counting your daughter), so the cases are out there, but the group at CHOP is obviously totally inexperienced with this disease, thus their desire to learn as much as they can from your daughter's case. They can't help but view her as a "guinea pig", to a certain extent, so, as you have already realized, you may need to exercise discretion, in allowing certain invasive test procedures. It's good for them to learn, but your daughter's health and well-being are the most important considerations here.
Personally, I would be rather reluctant to recommend the Pepto-Bismol treatment for a 2-year old. Bismuth is a heavy metal, and many adults show toxic effects if the treatment is continued past the once-recommended 8-week treatment program. Dr. Fine, of Enterolab, originally created the Pepto-Bismol treatment, back in the early days of his research, but he no longer recommends it as a practical treatment. Now he recommends the diet alone. If she recommends his, (now obsolete), treatment, why does she not trust his lab? That seems rather incongruous. I'll bet a GF cookie that she doesn't have the foggiest idea that he is the doctor who originally developed that treatment.
Some of our members here have tried various oils, and Aloe Vera juice, because of all the advertised benefits attributed to them. I'm not aware that anyone has ever reported any significant digestive system benefits from any of them, however, as far as MC is concerned. Pumpkin oil, for example, is even claimed to have the properties of a vermifuge, (meaning that it can serve as an agent that expels worms, or other animal parasites, from the intestines).
Your family definitely seems to have genes that tend to make you vulnerable to various autoimmune issues.
Tex
To continue:
The AB stands for antibodies. The parietal cells, (in the stomach), secrete intrinsic factor and stomach acid. Intrinsic factor is a glycoprotein which is necessary for the absorption of vitamin B12 in the small intestine. IOW, if intrinsic factor is not produced, the result is pernicious anemia - we have at least one member who has that condition, though I'm not sure if she produces antibodies to her parietal cells. The other two tests check for thyroid antibodies. Antithyroglobulin antibodies can damage the thyroid gland and affect its function. This test is useful in the diagnosis of thyroid autoimmune issues, and also some other disorders, such as: Hashimoto thyroiditis (an autoimmune thyroid disease), Graves disease (overactivity of the thyroid), hypothyroidism (underactivity of the thyroid), thyroid cancer, lupus, rheumatoid arthritis, autoimmune hemolytic anemia and Sjogren's syndrome. The anti-microsomal test is used to confirm the cause of thyroid problems or other autoimmune disorders. The body produces microsomal antibodies in response to microsomes escaping from damaged thyroid cells.
Eating Activa every day may be beneficial, if she is not casein intolerant.
Regarding the Imodium - it works by slowing down motility, (the peristaltic pumping action of the intestines), which will probably cause a weight increase, all right, but I'm not sure that it will be beneficial weight, since diarrhea usually exists in the first place because the body is trying to purge what it considers to be a toxic substance. Because of that fact, the use of a drug such as this can increase the risk of toxic megacolon, especially if drug-induced C. diff is a factor. Children, especially very young children, are very sensitive to the effects of Imodium, which may increase the chance of side effects during treatment. Also, Imodium may hide the symptoms of dehydration, which can result in a serious health problem with dehydration.
In addition, be aware that Imodium is an opioid receptor agonist, though it does not affect the central nervous system like other opioids. IOW, Imodium molecules do not cross the blood-brain barrier in significant amounts, so it has no analgesic properties, though it can in some cases cause physical dependence. If a child happens to have a compromised blood brain barrier, though, (as in the case of meningitis, for example), then special caution would be needed, due to increased variability of response.
That said, however, in general, Imodium is a relatively save medication, that causes no problems for most adults, but, of course, we're talking about a 2-year old here, not an adult. Polly might have some thoughts on the relative safety for use with kids in that age range.
The fact that for all those doctors at CHOP, they have seen only two cases of MC in their entire careers, and none in children, does not speak well for their ability to treat this disease. On this board alone, we have seen at least a couple hundred cases, and I can recall at least three members who registered here, with diagnosed cases of MC in children, (not counting your daughter), so the cases are out there, but the group at CHOP is obviously totally inexperienced with this disease, thus their desire to learn as much as they can from your daughter's case. They can't help but view her as a "guinea pig", to a certain extent, so, as you have already realized, you may need to exercise discretion, in allowing certain invasive test procedures. It's good for them to learn, but your daughter's health and well-being are the most important considerations here.
Personally, I would be rather reluctant to recommend the Pepto-Bismol treatment for a 2-year old. Bismuth is a heavy metal, and many adults show toxic effects if the treatment is continued past the once-recommended 8-week treatment program. Dr. Fine, of Enterolab, originally created the Pepto-Bismol treatment, back in the early days of his research, but he no longer recommends it as a practical treatment. Now he recommends the diet alone. If she recommends his, (now obsolete), treatment, why does she not trust his lab? That seems rather incongruous. I'll bet a GF cookie that she doesn't have the foggiest idea that he is the doctor who originally developed that treatment.
That's not a very fair statement, in view of my previous paragraph. I wonder if she is trying to make $ out of her medical practice. I'm guessing that she is. LOL. Trust me, Dr. Fine has probably forgotten more about MC, than she will ever know, (Dr. Fine has the disease himself, which is what prompted him to devote his medical career to researching it in the first place). If you used Enterolab to discover whether or not Camryn is casein intolerant, for example, you would know whether or not the Activa might provide some benefit, or whether it will just serve to guarantee that the inflammation in her gut is perpetuated.I brought up the Enterolab tests and she was VERY skeptical...she said it sounds like someone trying to make $.
Some of our members here have tried various oils, and Aloe Vera juice, because of all the advertised benefits attributed to them. I'm not aware that anyone has ever reported any significant digestive system benefits from any of them, however, as far as MC is concerned. Pumpkin oil, for example, is even claimed to have the properties of a vermifuge, (meaning that it can serve as an agent that expels worms, or other animal parasites, from the intestines).
Your family definitely seems to have genes that tend to make you vulnerable to various autoimmune issues.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Sara,
In addition to what Gloria posted, some of us experience alternating D and C, and a very few of us occasionally experience periods of spontaneous remission, (IOW, periods of remission with no known reason). I am one who reacts with alternating D and C, and I agree that it is much to be preferred over constant D.
Tex
In addition to what Gloria posted, some of us experience alternating D and C, and a very few of us occasionally experience periods of spontaneous remission, (IOW, periods of remission with no known reason). I am one who reacts with alternating D and C, and I agree that it is much to be preferred over constant D.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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kate_ce1995
- Rockhopper Penguin
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- Location: Vermont
If I remember right, there was an article found by someone at one point that suggested that the sigmoid colon was the last part of the colon typically affected by MC, and that one could have MC and not have it show up in biopsies taken in the sigmoid region. Along these lines of thinking, to have it show up in the sigmoid (as I did, too) it is likely throughout.
I hope today goes as well from a poop perspective (certainly not the temper tantrum side). keep up the gf diet. Sounds like you are on the right track. We had a member with both MC and Hashimotos. Sounds like you all have the genetics for these autoimmune illnesses. Sounds hard, but at least you are seeing some patterns and can all support one another.
Big hugs for Camryn. She's a trooper.
Katy
I hope today goes as well from a poop perspective (certainly not the temper tantrum side). keep up the gf diet. Sounds like you are on the right track. We had a member with both MC and Hashimotos. Sounds like you all have the genetics for these autoimmune illnesses. Sounds hard, but at least you are seeing some patterns and can all support one another.
Big hugs for Camryn. She's a trooper.
Katy
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Camryn'sMommy
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- Joined: Thu Aug 21, 2008 1:49 pm
- Location: Langhorne, PA, USA
Yeah, I definitely am not going to start any meds before seeing if the gf diet works. I talked to my husband and we are holding off indefinitely on the colonoscopy.
Thanks for all the info. I'm not looking forward to her getting more bloodwork....she is really strong and I can't hold her during the test. My husband has to hold her and he says it takes 75% of his strength to hold her down.
Only 1 poop yesterday and it was about 30 hours after the last one. It was really small....not solid, not water....but I am encouraged. This is a big difference....we are used to 6-8 a day. I'm constantly buying diapers and wipes!
I'm going to try the Activia. She loves yogurt and we aren't on a dairy free diet (yet).
Thanks for all the info. I'm not looking forward to her getting more bloodwork....she is really strong and I can't hold her during the test. My husband has to hold her and he says it takes 75% of his strength to hold her down.
Only 1 poop yesterday and it was about 30 hours after the last one. It was really small....not solid, not water....but I am encouraged. This is a big difference....we are used to 6-8 a day. I'm constantly buying diapers and wipes!
I'm going to try the Activia. She loves yogurt and we aren't on a dairy free diet (yet).
Mommy to Camryn - 8 years old - dx'd with LC 8/08
The reduced volume is a very good sign, even if D is still present. It's a sign that the reaction is much less severe. One of the reasons why MC causes some patients to have to make so many trips to the bathroom is because during the most severe reactions, it causes what is known as "secretory" diarrhea. With secretory diarrhea, the colon actually secretes water into the lumen, rather than removing it , the way it's designed to do. Secretory diarrhea tends to cause huge volumes of effluent, and, of course, it tends to cause dehydration at a very rapid rate. Normal, (osmotic), diarrhea, is not nearly as hard on the body, obviously.
Here's one thing to look for with the Activa, (or any other dairy products). We've found that if we're casein intolerant, and we ingest any dairy, we usually get what we call "battery acid" D, a term which is pretty much self explanatory. IOW, it's even more irritating to the surrounding tissues than "regular" D. If that doesn't happen, then Camryn may well be OK with dairy.
Tex
Here's one thing to look for with the Activa, (or any other dairy products). We've found that if we're casein intolerant, and we ingest any dairy, we usually get what we call "battery acid" D, a term which is pretty much self explanatory. IOW, it's even more irritating to the surrounding tissues than "regular" D. If that doesn't happen, then Camryn may well be OK with dairy.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Camryn'sMommy
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- Joined: Thu Aug 21, 2008 1:49 pm
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She had D twice today...what my husband describes as "creamy"...haha. He thinks it is from the chocolate milk, which I told him to stop giving her. We are stopping it now and we'll see if that helps.
Is Ocean Spray No Sugar Added 100% Cranberry Juice ok to drink? Ingredients include "natural flavors"...I wasn't sure if that was bad or not.
Is Ocean Spray No Sugar Added 100% Cranberry Juice ok to drink? Ingredients include "natural flavors"...I wasn't sure if that was bad or not.
Mommy to Camryn - 8 years old - dx'd with LC 8/08
That doesn't sound too bad, and it may well be from the chocolate milk, as your husband suspects. "Creamy" certainly beats "watery", in the game of MC.
Unless she has diabetes, pure, unsweetened cranberry juice should be OK. And, it has the added advantage of helping to prevent UTIs. Of course, excess amounts of any type of juice can cause D, but in moderation, it shouldn't be a serious problem.
Tex
Unless she has diabetes, pure, unsweetened cranberry juice should be OK. And, it has the added advantage of helping to prevent UTIs. Of course, excess amounts of any type of juice can cause D, but in moderation, it shouldn't be a serious problem.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Camryn'sMommy
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- Location: Langhorne, PA, USA
Thanks - I'll try and give her a little cranberry juice.
I'm sure you guys know this but......in each Whole Foods they have a "gluten-free" list of products to give to customers. They also have "gluten and casein-free" lists. I will have to check that out the next time I go. The closest one to me is 30 minutes away. I hope they build one closer soon! Also, have you checked out bakery items from Foods by George? The brownies are really good. I got her blueberry muffins yesterday.
Poop Tracker:
April-August - 6-8 D
9/1 - 2 D
9/2 - 1 (solid!)
9/3 - 2 semi-D
That is a definite improvement w/the gf diet!
I'm sure you guys know this but......in each Whole Foods they have a "gluten-free" list of products to give to customers. They also have "gluten and casein-free" lists. I will have to check that out the next time I go. The closest one to me is 30 minutes away. I hope they build one closer soon! Also, have you checked out bakery items from Foods by George? The brownies are really good. I got her blueberry muffins yesterday.
Poop Tracker:
April-August - 6-8 D
9/1 - 2 D
9/2 - 1 (solid!)
9/3 - 2 semi-D
That is a definite improvement w/the gf diet!
Mommy to Camryn - 8 years old - dx'd with LC 8/08
Quite a few members shop at Whole Foods, I believe. I wasn't familiar with Foods by George, so thanks for the tip. In my own case, the nearest Whole Foods store is so far away and so difficult to get to that I never go there, but I do order GF products over the internet, from time to time, so I'll keep Foods by George in mind.
I love your "Poop Tracker" table.
You've given us another tool to use for tracking progress, (or lack of progress, in some situations). And yes, she obviously is showing some very impressive improvement on the diet.
I hope she continues to make progress.
Tex
I love your "Poop Tracker" table.
You've given us another tool to use for tracking progress, (or lack of progress, in some situations). And yes, she obviously is showing some very impressive improvement on the diet.I hope she continues to make progress.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Interesting that 30 doctors on staff there think this is rare and haven't diagnosed it.....as if that implies they would know it when they see it!!! Dr.Knigge at OHSU is an instructor there and gives seminars around the country on inflammatory bowel disease. LC is seen and diagnosed consistently there because they know what to look for!! They don't waste time denying it's probability because they haven't seen it!!!!!!!!!!!!!!!!! Perhaps you could give them her name and ask them to consult with her and her team. she is working for a teaching hospital that deals with his all the time. She also sees hundreds of cases of c-diff which I had and the docs in Salem, Or. seem to think it is rarely seen....hmmmmm.
Try not to be intimidated by these "experts" and continue your research on her behalf. People here on this forum seem to know more than most GI docs!! This seems arrogant, but I have see it to be true at least in my case and as you read you will see this theme over and over again. Keep writing and asking questions....we are all here for you !!!!
Try not to be intimidated by these "experts" and continue your research on her behalf. People here on this forum seem to know more than most GI docs!! This seems arrogant, but I have see it to be true at least in my case and as you read you will see this theme over and over again. Keep writing and asking questions....we are all here for you !!!!
"It is very difficult to get a man to understand something, when his salary depends upon his not understanding it. "
Upton Sinclair
Upton Sinclair
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Camryn'sMommy
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