Guest guest Posted September 23, 2004 Report Share Posted September 23, 2004 from Dale, Mom to Katy, CVID, age 20 , why don't you call IDF and get the name of a Clinical Immunologist and deal with your questions? That may sound blunt, but until a psychologist sat and I down and told us that if we didn't get off our duff our daughter would die. We couldn't find the courage to fight the medical system that kept telling us that infections are a normal part of growing up and that sinus infections wouldn't kill her and tummy upsets are probably from stress and she was pushing herself too hard in gymnastics and blah, blah, blah. That's why I ask you -- why don't you take the information that you know and make some concrete progress on it? Don't wait until she's sick enough that someone will step in and rescue you -- that doesn't happen except in fantasies these days -- especially with PID. Gather up your facts, take it to someone who will listen and get this child help. I believe that the recommended treatment for a child that doesn't respond to the pneumovax with protective numbers is to look at the clinical picture to decide whether quality of life is affected. If she's not building response to pneumovax then her numbers mean nothing. She is unprotected and at risk. Call IDF and talk with them about what you should do. Get the facts and get her some help NOW! Are you connected with a IDF person in your state? They can usually guide you to good doctors because they've navigated it for themselves. At the very least, ask your pediatrician to call the Consulting Immunologist number (1-877-666-0866) to find out the recommended treatment at this point. I'm praying for you that you'll take action and get results! Now, I also know that a stern command like that can prompt the exact opposite response -- you may feel that I'm attacking your parenting and how you've dealt with up to this point. I'm not. I'm saying that you have excellently navigated this course with and for and it's time for you to take a stand and trust the instincts that God has given you. Even if you have to travel across the continent -- it's time for to get help. I'm praying for your courage to do just that! No child should have to wait until they have sepsis or double pneumonia to get help. Our job is to prevent that from EVER happening again. Please take action NOW. The IDF's goal is to prevent permanent damage by early diagnosis and treatment. There's no reason for her to continue to suffer if there's evidence that her body is not building antibodies -- she needs treatment. I'll be praying! In His service, Dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2004 Report Share Posted September 23, 2004 In a message dated 9/23/2004 4:14:55 PM Eastern Daylight Time, dale@... writes: We couldn't find the courage to fight the medical system that kept telling us that infections are a normal part of growing up and that sinus infections wouldn't kill her and tummy upsets are probably from stress and she was pushing herself too hard in gymnastics and blah, blah, blah. Dale, what caused her stomach problems? Janet, mom to Brittany, CVID, age 13 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2004 Report Share Posted September 23, 2004 from Dale, Mom to Katy, CVID, age 20 Janet, Katy's initial presentation was of incredible amounts of gas -- belching uncontrolably, and passing gas (uncool!). Her gut would actually distend visibly from all the gas. That would be followed by severe diarrhea and sometimes vomiting and terrible gut pain. It happened after every meal, snack, etc. regardless of what she ate -- but our first response was to try to isolate what was causing it. We could definitely say that lactose caused the vomiting, and by stopping lactose, we could eliminate the vomiting, but the other wouldn't stop. So, then we began other eliminations until we were practically starving her to death. Yet, she was still passing blood in the stool. When we finally got a gastroenterologist to listen to her story (un biased by her pediatrician who felt there was nothing wrong) and conduct an endoscope, he found that her gut was just bright red and acutely inflamed. But other than a lactose intolerance, he couldn't put a finger on what was causing the problem. It was another year after that before she was diagnosed with CVID. What he convinced us of was that we should not be trying to isolate one particular food -- but rather accept the fact that her gut was extremely inflammed so it did not matter what she ate -- everything hurt. So, we went continued to eliminate milk but added in most other things but on a softer, gentler diet. Nothing seemed to help even though we were very careful about keeping the gut happy. When she started IVIG, we began to see gradual improvements for the first time. After only a few months we could say that the intense gas was much less. And at the end of one year we realized that her diet had really expanded and she was not having the serious episodes of diarrhea and gas production. Today, she was able to reintroduce milk products about 2 years after starting IVIG as long as she doesn't overload on milk or ice cream or cheese. Her stool is usually watery, but usually only happens once a day. We have come to understand that that is okay or normal for Katy. She has to watch overloading it with fats. She is VERY careful about what she eats -- extremely picky about doneness of meats, refuses left-overs, won't eat off a buffet, etc. She can't stomach sandwich meat (which we've heard is a high risk for contaminations) so it seems that her body has taught her what it will tolerate and what it won't. She's eating more fast foods these days since she left for college and seems to be doing okay. She can't stomach the college cafeteria, so has her own apartment this year so that she can better cook for herself. She quite often has an upset stomach, but she knows how to calm it down quickly without getting into trouble. She's learned about bananas and rice and things that slow down the digestive track. We do NOT do Immodium because of the danger of bacterial contamination leading to sepsis. Fibers and things like that seemed to irritate more than help. So, she just self-regulates her diet. The other thing we discovered is water. It is key to keeping her healthy. We realized that when the gut swells, there is a abhorrence of water. So, she had to force herself to drink water to dilute whatever is attacking her gut. She tries to drink her 8 cups of water a day in addition to soda pop and juice. She drinks way too much pop, but ...... she's 20! Hope that helps. Here's a list of things that could cause chronic diarrhea, that I wrote not long ago for this list. Maybe it will give you some ideas. #1 There could be something totally unrelated going on - like allergies, or maladsorption, etc. #2 The diarrhea could be caused by parasites -- especially giardia -- not something they automatically check for if you've not traveled outside the U.S. but is VERY common for PIDs. #3 The diarrhea could be caused by bacteria in the gut. #4 The diarrhea could be caused by bacterial overgrowth in the gut. While the bacteria is normal for " normal " people and doesn't show up on a stool study, it could still be causing problems. That's usually tested with a " breath test " . #5 The diarrhea could be caused by trace amounts of bacteria in food, etc. that is triggering an immune response that is attacking everything and making it raw! Once the lining of the gut has been irritated -- then you can get into a cascade of worsening symptoms. That's why a normal person must watch what they eat right after a diarrhea attack so that it doesn't further irritate the gut. for Katy, this phenomena led to 3 years of diarrhea that almost killed her -- yet, nothing showed up on the stool studies, no bacterial overgrowth was found. But on endoscopy they found that her gut was just majorly inflamed. We had to break the cycle of diarrhea by first a liquid diet and then soft foods, etc. While that would break the cycle for a day or two, she would be back into trouble within 2 days. We now believe that #6 was the primary problem. #6 The diarrhea could be caused by food in the gut that is not protected by IgA. In a healthy person, IgA molecules attach to the food so that it passes through the gut without being attacked. If you are low on IgA, you'll have more stomach irritations just because the body starts attacking food -- thinking it is a germ! However, IgM can compensate -- so more problems are seen with CVID than with selective IgA deficiency. The figures I have based on a lecture at IDF back in 2000 was that CVID is the most common PID to have GI problems. IgA deficiency have much less problems because they can compensate with IgM. This gastroenterologist's figure was that 60% of CVID patients also report chronic diarrhea. The IDF survey of 1999 shows 30% of PID's in general have chronic diarrhea. Then, #7 is that the diarrhea may be caused by frequent use of antibiotics. We also saw this with Katy and found that anytime she's on antibiotics -- we also treat with Acidophilos. Talk to your pediatrician about dosage, etc. And #8 is that auto-immune inflammatory diseases sometimes become a problem for PIDs. And that just means that while our immune system doesn't work well -- it over compensates in some areas -- and that quite often results in an attack of the gut. However, Irritable Bowel Disease is only seen in 5.6% of CVID'ers according to this gastroenterologist. And #9 is very, very rare but is called nodular lymphoid hyperplasia and is caused by lymph nodes in the bowel wall becoming too large and the gut trying to " dump " them causing major problems. Is Chronic Diarrhea related to PIDs - YUP!!! Once Katy started IVIG, stopped all lactose intake (because her endoscope showed her to be lactose intolerant), went to a soft diet for about a month -- her gut began to heal. When she was home this summer she was eating ice cream and even putting milk on her cereal. When I commented, she said that as long as she didn't drink a whole glass of milk, or eat ice cream two days in a row, she was fine. She still has very loose stool more than she has " normal " stool. But most days it's not more than once or twice and she considers that normal and healthy for her. She doesn't tolerate a lot of fat and if she overeats fat, she'll have a major " dump " . We don't know what causes that -- but she's willing to live with it. Hope that helps you to think through some of the possibilities. In His service, Dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2004 Report Share Posted September 23, 2004 from Dale, Mom to Katy, CVID, age 20 Janet, Katy's initial presentation was of incredible amounts of gas -- belching uncontrolably, and passing gas (uncool!). Her gut would actually distend visibly from all the gas. That would be followed by severe diarrhea and sometimes vomiting and terrible gut pain. It happened after every meal, snack, etc. regardless of what she ate -- but our first response was to try to isolate what was causing it. We could definitely say that lactose caused the vomiting, and by stopping lactose, we could eliminate the vomiting, but the other wouldn't stop. So, then we began other eliminations until we were practically starving her to death. Yet, she was still passing blood in the stool. When we finally got a gastroenterologist to listen to her story (un biased by her pediatrician who felt there was nothing wrong) and conduct an endoscope, he found that her gut was just bright red and acutely inflamed. But other than a lactose intolerance, he couldn't put a finger on what was causing the problem. It was another year after that before she was diagnosed with CVID. What he convinced us of was that we should not be trying to isolate one particular food -- but rather accept the fact that her gut was extremely inflammed so it did not matter what she ate -- everything hurt. So, we went continued to eliminate milk but added in most other things but on a softer, gentler diet. Nothing seemed to help even though we were very careful about keeping the gut happy. When she started IVIG, we began to see gradual improvements for the first time. After only a few months we could say that the intense gas was much less. And at the end of one year we realized that her diet had really expanded and she was not having the serious episodes of diarrhea and gas production. Today, she was able to reintroduce milk products about 2 years after starting IVIG as long as she doesn't overload on milk or ice cream or cheese. Her stool is usually watery, but usually only happens once a day. We have come to understand that that is okay or normal for Katy. She has to watch overloading it with fats. She is VERY careful about what she eats -- extremely picky about doneness of meats, refuses left-overs, won't eat off a buffet, etc. She can't stomach sandwich meat (which we've heard is a high risk for contaminations) so it seems that her body has taught her what it will tolerate and what it won't. She's eating more fast foods these days since she left for college and seems to be doing okay. She can't stomach the college cafeteria, so has her own apartment this year so that she can better cook for herself. She quite often has an upset stomach, but she knows how to calm it down quickly without getting into trouble. She's learned about bananas and rice and things that slow down the digestive track. We do NOT do Immodium because of the danger of bacterial contamination leading to sepsis. Fibers and things like that seemed to irritate more than help. So, she just self-regulates her diet. The other thing we discovered is water. It is key to keeping her healthy. We realized that when the gut swells, there is a abhorrence of water. So, she had to force herself to drink water to dilute whatever is attacking her gut. She tries to drink her 8 cups of water a day in addition to soda pop and juice. She drinks way too much pop, but ...... she's 20! Hope that helps. Here's a list of things that could cause chronic diarrhea, that I wrote not long ago for this list. Maybe it will give you some ideas. #1 There could be something totally unrelated going on - like allergies, or maladsorption, etc. #2 The diarrhea could be caused by parasites -- especially giardia -- not something they automatically check for if you've not traveled outside the U.S. but is VERY common for PIDs. #3 The diarrhea could be caused by bacteria in the gut. #4 The diarrhea could be caused by bacterial overgrowth in the gut. While the bacteria is normal for " normal " people and doesn't show up on a stool study, it could still be causing problems. That's usually tested with a " breath test " . #5 The diarrhea could be caused by trace amounts of bacteria in food, etc. that is triggering an immune response that is attacking everything and making it raw! Once the lining of the gut has been irritated -- then you can get into a cascade of worsening symptoms. That's why a normal person must watch what they eat right after a diarrhea attack so that it doesn't further irritate the gut. for Katy, this phenomena led to 3 years of diarrhea that almost killed her -- yet, nothing showed up on the stool studies, no bacterial overgrowth was found. But on endoscopy they found that her gut was just majorly inflamed. We had to break the cycle of diarrhea by first a liquid diet and then soft foods, etc. While that would break the cycle for a day or two, she would be back into trouble within 2 days. We now believe that #6 was the primary problem. #6 The diarrhea could be caused by food in the gut that is not protected by IgA. In a healthy person, IgA molecules attach to the food so that it passes through the gut without being attacked. If you are low on IgA, you'll have more stomach irritations just because the body starts attacking food -- thinking it is a germ! However, IgM can compensate -- so more problems are seen with CVID than with selective IgA deficiency. The figures I have based on a lecture at IDF back in 2000 was that CVID is the most common PID to have GI problems. IgA deficiency have much less problems because they can compensate with IgM. This gastroenterologist's figure was that 60% of CVID patients also report chronic diarrhea. The IDF survey of 1999 shows 30% of PID's in general have chronic diarrhea. Then, #7 is that the diarrhea may be caused by frequent use of antibiotics. We also saw this with Katy and found that anytime she's on antibiotics -- we also treat with Acidophilos. Talk to your pediatrician about dosage, etc. And #8 is that auto-immune inflammatory diseases sometimes become a problem for PIDs. And that just means that while our immune system doesn't work well -- it over compensates in some areas -- and that quite often results in an attack of the gut. However, Irritable Bowel Disease is only seen in 5.6% of CVID'ers according to this gastroenterologist. And #9 is very, very rare but is called nodular lymphoid hyperplasia and is caused by lymph nodes in the bowel wall becoming too large and the gut trying to " dump " them causing major problems. Is Chronic Diarrhea related to PIDs - YUP!!! Once Katy started IVIG, stopped all lactose intake (because her endoscope showed her to be lactose intolerant), went to a soft diet for about a month -- her gut began to heal. When she was home this summer she was eating ice cream and even putting milk on her cereal. When I commented, she said that as long as she didn't drink a whole glass of milk, or eat ice cream two days in a row, she was fine. She still has very loose stool more than she has " normal " stool. But most days it's not more than once or twice and she considers that normal and healthy for her. She doesn't tolerate a lot of fat and if she overeats fat, she'll have a major " dump " . We don't know what causes that -- but she's willing to live with it. Hope that helps you to think through some of the possibilities. In His service, Dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2004 Report Share Posted September 24, 2004 In a message dated 9/23/2004 11:49:04 PM Eastern Daylight Time, dale@... writes: Hope that helps you to think through some of the possibilities. Thank you Dale! Now, all I have to do is investigate. I told the immuno DR. and he kind of blew it off. Said he check something in her blood and possibly check her pancreas. I already think she has developed irritable bowl. But I do also know there is more going on than that. Those irritable symptoms are just starting to occur. Stomach hurts every day sometimes pain, usually nausea. This is going on way too long now. Almost every time she eats she gets a stomach ache so she has to stop eating. Then try again in a little while and it usually happens again. So, she is eating but not much at a time. She is too thin. When she is on antibiotics we always know it will be worse than usual. Same way with the head hurts every day, has to take Motrim. I hate to give it to her almost everyday. Body aches are another issue. I just hope this IVIG kicks in and she starts to feeling better. She has had 5 now. I know it can take time. In the meantime I want to do all I can for her. Once again thank you for taking the time to explain this to me. Janet, mom to Brittany, CVID, age 13 Quote Link to comment Share on other sites More sharing options...
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