Guest guest Posted February 23, 1999 Report Share Posted February 23, 1999 Dear , When Katy (who by the way is 14) was at her worst -- just being diagnosed and everything going wrong, we also had to deal with her belief system about death and about life. One of our best resources turned out to be a telephone counselor at Focus on the Family. I called their 800 number and just asked to talk with someone who could counsel me on how to talk with her. The gentleman I talked to was wonderful. He not only gave me good advice, he encouraged me and realized that I was as injured as she was. Later I recieved from him a long list of recommended books for us to choose from and some freebies. I highly recommend their counseling. Their number is: 1-. They will ask you where you heard Focus on the Family's radio broadcast -- just tell them you got the number from a friend! Hang in there. These questions bring up hard answers for all of us. But I believe that you can't really enjoy living until you settle the dying questions. In His service, Dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 1999 Report Share Posted March 1, 1999 Sue, Macey is only in preschool but is homebound schooled by a county school teacher. She qualifies for the teacher to come to the house because Macey's immunologist has said that she is not ready to go out to school. You might check with the local school system because they are required by law to provide equal access to " other health impaired " children. Macey receives Speech and OT at home through the school system also. I think the winter hits alot of people hard, no matter what their immune system function is. Your address shows up in the " From " area of the email with the PedPID address showing in the TO: part. The traffic was alittle slow over the weekend but picks up during the week. Try and send everything to PedPIDonelist and things should get through pretty well. Ursula Holleman (no subject) Dear Ursula: Hi...Yes of course please put it out there if you think it will help. I tried to give you as much detail as possible. I did forget to mention that (9) does lead as much of a normal life as possible. He attends school, when he is able and enjoys as much of an activity as he can. He does much better in the spring and summer. (6) plays and does as much as possible, but I am now home schooling him. I started him in the fall and discovered very quickly that it would not work out. I don't want people to get the idea that all we accomplish in a day is sickness, although it seems that way right now. I know that every one goes through good and bad times..... Write if I can be of any assistance...Thanks again... How are people getting my address? Are they reading my post? How can I read other people's posts? I don't seem to find any others except mine and yours.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 1999 Report Share Posted March 1, 1999 Sue, Macey is only in preschool but is homebound schooled by a county school teacher. She qualifies for the teacher to come to the house because Macey's immunologist has said that she is not ready to go out to school. You might check with the local school system because they are required by law to provide equal access to " other health impaired " children. Macey receives Speech and OT at home through the school system also. I think the winter hits alot of people hard, no matter what their immune system function is. Your address shows up in the " From " area of the email with the PedPID address showing in the TO: part. The traffic was alittle slow over the weekend but picks up during the week. Try and send everything to PedPIDonelist and things should get through pretty well. Ursula Holleman (no subject) Dear Ursula: Hi...Yes of course please put it out there if you think it will help. I tried to give you as much detail as possible. I did forget to mention that (9) does lead as much of a normal life as possible. He attends school, when he is able and enjoys as much of an activity as he can. He does much better in the spring and summer. (6) plays and does as much as possible, but I am now home schooling him. I started him in the fall and discovered very quickly that it would not work out. I don't want people to get the idea that all we accomplish in a day is sickness, although it seems that way right now. I know that every one goes through good and bad times..... Write if I can be of any assistance...Thanks again... How are people getting my address? Are they reading my post? How can I read other people's posts? I don't seem to find any others except mine and yours.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 1999 Report Share Posted March 2, 1999 Hi , My name is Sue Warner and I have 2 children with an immune deficiency. They both have stomach problems. My youngest is always complaining of a stomach ache. We have discovered that he is lactose intolerant. We now only use special milk and he gets a Lactaid (3 ultras) when he wants to have a little treat. This has helped a lot. He is also receiving IV antibiotics right now that upset his stomach as well. The boys take Zantac on a daily basis. They receive IVIG every 2 weeks....Does your daughter take antibiotics regularly or can you see any pattern with the milk? Let me know if you have any other questions. I am at Meach9960@... Thanks and good luck Sue Warner Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 1999 Report Share Posted March 2, 1999 Hi , My name is Sue Warner and I have 2 children with an immune deficiency. They both have stomach problems. My youngest is always complaining of a stomach ache. We have discovered that he is lactose intolerant. We now only use special milk and he gets a Lactaid (3 ultras) when he wants to have a little treat. This has helped a lot. He is also receiving IV antibiotics right now that upset his stomach as well. The boys take Zantac on a daily basis. They receive IVIG every 2 weeks....Does your daughter take antibiotics regularly or can you see any pattern with the milk? Let me know if you have any other questions. I am at Meach9960@... Thanks and good luck Sue Warner Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 1999 Report Share Posted March 2, 1999 Adam is 3 and has lots of stomach aches, too....and light, clay colored stools. We are to see the immunologist in April and are going to address this with her. If you find anything out before then, let me know!!!!!!! Ginger Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 1999 Report Share Posted March 2, 1999 Michele I was amazed to hear about the undiagnosed stomach pain that persists with your daughter. My daughter also has the same thing and they have no answers and feel that her stomach is sending signals to her brain that are wrong. This is frustrating. It has been chronic for 2 1/2 yr. now. It made no difference when she was on IVIG and off. She has had 3 positive cultures come back for helicobacter pylori and was treated aggressively 3 different occasions. The pain persists and we are no further to finding answers for it. They have done 2 scopes on her stomach and all looks perfectly normal. I would like to know what the connection is to PID. Take care Kate (no subject) >From: myj001@... > >My name is Michele. I have a daughter with PID. She's never had an official diagnosis. One of her doctor's believes she has CVID. She is 8 years old and has been sick since she was 5 mos old. She was diagnosed when she was 6 years old. > >She has chronic infections of the respiratory system. She has chronic stomach pain that no one can figure out. If anyone has any suggestions please let me know. > >She takes IVIG every 4 weeks, this has help alot. >It has pretty much stopped the infections, but the chronic stomach problems persist. She's had every test run that the doctors can think of with no luck. > >I think this PedPID is wonderful. It already has help me just knowing there are people out there who are dealing with the same disease. > >Thank You. > > >------------------------------------------------------------------------ >Did you know that we have over 85,000 e-mail communities at Onelist? >http://www.onelist.com >Come visit our new web site and explore a new interest >------------------------------------------------------------------------ >This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 1999 Report Share Posted March 2, 1999 Michele I was amazed to hear about the undiagnosed stomach pain that persists with your daughter. My daughter also has the same thing and they have no answers and feel that her stomach is sending signals to her brain that are wrong. This is frustrating. It has been chronic for 2 1/2 yr. now. It made no difference when she was on IVIG and off. She has had 3 positive cultures come back for helicobacter pylori and was treated aggressively 3 different occasions. The pain persists and we are no further to finding answers for it. They have done 2 scopes on her stomach and all looks perfectly normal. I would like to know what the connection is to PID. Take care Kate (no subject) >From: myj001@... > >My name is Michele. I have a daughter with PID. She's never had an official diagnosis. One of her doctor's believes she has CVID. She is 8 years old and has been sick since she was 5 mos old. She was diagnosed when she was 6 years old. > >She has chronic infections of the respiratory system. She has chronic stomach pain that no one can figure out. If anyone has any suggestions please let me know. > >She takes IVIG every 4 weeks, this has help alot. >It has pretty much stopped the infections, but the chronic stomach problems persist. She's had every test run that the doctors can think of with no luck. > >I think this PedPID is wonderful. It already has help me just knowing there are people out there who are dealing with the same disease. > >Thank You. > > >------------------------------------------------------------------------ >Did you know that we have over 85,000 e-mail communities at Onelist? >http://www.onelist.com >Come visit our new web site and explore a new interest >------------------------------------------------------------------------ >This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 1999 Report Share Posted March 3, 1999 Hi Michele, Welcome to the group! It really is nice to have other parents who are dealing with the same issues every day. I think that the comments from Barb are really on target with the stomach issues. Are they using anything like Tagamet, etc.? That has helped some for us. Gail Kinsey's Mom - 6 1/2 with CVID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 1999 Report Share Posted March 3, 1999 Hi Michele, Welcome to the group! It really is nice to have other parents who are dealing with the same issues every day. I think that the comments from Barb are really on target with the stomach issues. Are they using anything like Tagamet, etc.? That has helped some for us. Gail Kinsey's Mom - 6 1/2 with CVID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 1999 Report Share Posted March 3, 1999 I received this by mistake MATHERS313@... wrote: > From: MATHERS313@... > > Adam is 3 and has lots of stomach aches, too....and light, clay colored > stools. We are to see the immunologist in April and are going to address this > with her. If you find anything out before then, let me know!!!!!!! > > Ginger > > ------------------------------------------------------------------------ > Ideas on how we can improve ONElist? > http://www.onelist.com > Check out the Suggestion Box feature on our new web site > ------------------------------------------------------------------------ > This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 1999 Report Share Posted March 3, 1999 I recieved this by mistake. I enroled with PedPID yesterday and somehow and receiving everyones e-mail. I have a daughter with Selective IgA Deficiency and would love to here from anyone with comments about this. Sherry MEACH9960@... wrote: > From: MEACH9960@... > > Hi , > > My name is Sue Warner and I have 2 children with an immune deficiency. They > both have stomach problems. My youngest is always complaining of a stomach > ache. We have discovered that he is lactose intolerant. We now only use > special milk and he gets a Lactaid (3 ultras) when he wants to have a little > treat. This has helped a lot. He is also receiving IV antibiotics right now > that upset his stomach as well. The boys take Zantac on a daily basis. They > receive IVIG every 2 weeks....Does your daughter take antibiotics regularly or > can you see any pattern with the milk? Let me know if you have any other > questions. > > I am at Meach9960@... > Thanks and good luck > > Sue Warner > > ------------------------------------------------------------------------ > Did you know that we have over 85,000 e-mail communities at Onelist? > http://www.onelist.com > Come visit our new web site and explore a new interest > ------------------------------------------------------------------------ > This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 1999 Report Share Posted March 3, 1999 I recieved this by mistake. I enroled with PedPID yesterday and somehow and receiving everyones e-mail. I have a daughter with Selective IgA Deficiency and would love to here from anyone with comments about this. Sherry MEACH9960@... wrote: > From: MEACH9960@... > > Hi , > > My name is Sue Warner and I have 2 children with an immune deficiency. They > both have stomach problems. My youngest is always complaining of a stomach > ache. We have discovered that he is lactose intolerant. We now only use > special milk and he gets a Lactaid (3 ultras) when he wants to have a little > treat. This has helped a lot. He is also receiving IV antibiotics right now > that upset his stomach as well. The boys take Zantac on a daily basis. They > receive IVIG every 2 weeks....Does your daughter take antibiotics regularly or > can you see any pattern with the milk? Let me know if you have any other > questions. > > I am at Meach9960@... > Thanks and good luck > > Sue Warner > > ------------------------------------------------------------------------ > Did you know that we have over 85,000 e-mail communities at Onelist? > http://www.onelist.com > Come visit our new web site and explore a new interest > ------------------------------------------------------------------------ > This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 1999 Report Share Posted March 4, 1999 Anal itching is a sign of yeast........ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 1999 Report Share Posted March 4, 1999 Anal itching is a sign of yeast........ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 1999 Report Share Posted March 4, 1999 Donna, Giardia is a parasite that causes diarrhea, vomiting, flatulence, bloating, etc. Flagyl is the normal treatment. It is often hard to locate in the stools. I also read in a medical book that the damage from Giardia can last up to one year. For Katy, they couldn't locate Giardia but decided to treat her with 20 days of Flagyl anyway. We saw very little improvement because she had been sick for so long (almost 2 years), but about 6 months after treatment, she seemed to be getting better for no apparent reason. We really think it was Giardia. We also found that Katy quit vomiting after every meal when we eliminated all traces of lactose -- not just in milk -- but in her breads and cookies and cereals and anything that contains lactose. It's pretty hard to do. You can obtain a list of all lactose products through " nondairy.com. " on the web. They have been really helpful and Katy immediately stopped the vomiting. We're still working on the rest of the digestive system. We hope someday to be able to try Lactaid tablets and see her diet expanded, but right now we're just trying to stay afloat with her current diet. Gail -- I hear you loud and clear. I've failed Katy so many times by not yelling loud enough -- or trying to keep everyone happy. I agree with to get doctor's orders written out in detail. After our fiasco at the Day Hospital, our immunologist wrote out detailed orders (as I dictated them to her) for what was needed when we started home health care. She even went so far as to say that any deviation from these orders had to be approved by her personally and gave them her pager #. Another thing I'm learning is to personally hold the doctors accountable. Katy has such terrible reactions to every medication, but I found that just mentioning it later didn't produce any consideration. So I started insisting that the doctor see every reaction and make them realize that I was not just making this stuff up to be hysterical. It has improved her care considerably. Now they think twice before ordering stuff. They know they'll have an itchy crying miserable kid in their office. I call it " documentation by the authorities that be " . We also had about a year of severe muscle cramps that were driving Katy crazy. They weren't just in the arms and legs, they were all over - neck muscles, back muscles, stomach muscle, everywhere. And when they would cramp they would turn to rock and sometimes leave bruise marks. We were VERY concerned that she had some kind of major problem. It was a major problem -- but a very simple solution. Because of all of her bloating and digestive discomfort -- she had quit drinking water. We didn't realize it until her doctor asked us to make sure she got 2 cups a day and she gagged on it. So we started with 1 cup, then 1 and 1/2. By the time we got up to 4 cups a day - the muscle cramps stopped. She's up to 6 cups a day now and very seldom gets muscle cramps unless she's over exercised some muscle. Think horses not zebras - right ! It's been a long, itchy day for us. But we're made it. She's in the tub and it's quiet for now! Gotta start dinner. In His service, Dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 1999 Report Share Posted March 4, 1999 Donna, Giardia is a parasite that causes diarrhea, vomiting, flatulence, bloating, etc. Flagyl is the normal treatment. It is often hard to locate in the stools. I also read in a medical book that the damage from Giardia can last up to one year. For Katy, they couldn't locate Giardia but decided to treat her with 20 days of Flagyl anyway. We saw very little improvement because she had been sick for so long (almost 2 years), but about 6 months after treatment, she seemed to be getting better for no apparent reason. We really think it was Giardia. We also found that Katy quit vomiting after every meal when we eliminated all traces of lactose -- not just in milk -- but in her breads and cookies and cereals and anything that contains lactose. It's pretty hard to do. You can obtain a list of all lactose products through " nondairy.com. " on the web. They have been really helpful and Katy immediately stopped the vomiting. We're still working on the rest of the digestive system. We hope someday to be able to try Lactaid tablets and see her diet expanded, but right now we're just trying to stay afloat with her current diet. Gail -- I hear you loud and clear. I've failed Katy so many times by not yelling loud enough -- or trying to keep everyone happy. I agree with to get doctor's orders written out in detail. After our fiasco at the Day Hospital, our immunologist wrote out detailed orders (as I dictated them to her) for what was needed when we started home health care. She even went so far as to say that any deviation from these orders had to be approved by her personally and gave them her pager #. Another thing I'm learning is to personally hold the doctors accountable. Katy has such terrible reactions to every medication, but I found that just mentioning it later didn't produce any consideration. So I started insisting that the doctor see every reaction and make them realize that I was not just making this stuff up to be hysterical. It has improved her care considerably. Now they think twice before ordering stuff. They know they'll have an itchy crying miserable kid in their office. I call it " documentation by the authorities that be " . We also had about a year of severe muscle cramps that were driving Katy crazy. They weren't just in the arms and legs, they were all over - neck muscles, back muscles, stomach muscle, everywhere. And when they would cramp they would turn to rock and sometimes leave bruise marks. We were VERY concerned that she had some kind of major problem. It was a major problem -- but a very simple solution. Because of all of her bloating and digestive discomfort -- she had quit drinking water. We didn't realize it until her doctor asked us to make sure she got 2 cups a day and she gagged on it. So we started with 1 cup, then 1 and 1/2. By the time we got up to 4 cups a day - the muscle cramps stopped. She's up to 6 cups a day now and very seldom gets muscle cramps unless she's over exercised some muscle. Think horses not zebras - right ! It's been a long, itchy day for us. But we're made it. She's in the tub and it's quiet for now! Gotta start dinner. In His service, Dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 1999 Report Share Posted March 4, 1999 Mathers, How could he be tested for yeast in the anal area? Urine has been tested for yeast but none was found. He uses hemoroid cream at least once a week. Thanks, Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 1999 Report Share Posted March 4, 1999 Mathers, How could he be tested for yeast in the anal area? Urine has been tested for yeast but none was found. He uses hemoroid cream at least once a week. Thanks, Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 1999 Report Share Posted March 4, 1999 Dale, My heart goes out to you and Katy. I hope your night goes well for the both of you. Walt had digestive problems since he was born. When he first came home from the hospital he couldn't tolerate his formula. He was colicky every minute of every day. We(thank GOD for an understanding and helpful hubby!!!) walked, rocked, drove, swept, swung, tried Donnagel and many other meds. We finally put him on Isomil and this seemed to help for a while. He can now tolerate milk but very little in one day and when he does drink it he gets severe diareaha, cramps and bloating. Docs have had him on tums500 with calcium since he was almost 2. There is also something in dill pickles that makes him break out in hives(he scratches until he bleeds!) and goes into full blown asthma attack. Certain red dyes(don't know which ones so I eliminate them all) also does this and once he was stung by a sweat bee and did the same thing. He was tested for bee stings but not sweat(don't have test for that) and found he is allergic to honey bees. Thanks, Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 1999 Report Share Posted March 4, 1999 Ursula, I will mention this to the doc next visit! They have never mentioned this and like I have said......I'm not a doc, just an ordinary mother taking care of a very sick child. I have no idea what questions to ask but thanks to ALL of you I can now go the the docs office prepared!!! Thank you all so much!!! Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 1999 Report Share Posted March 4, 1999 , Thanks for the info and I will definitely mention this to his doc on his next visit(3/18). Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 1999 Report Share Posted March 4, 1999 Donna, Giardia is a parasite that lives in the GI track. It is very common to immune deficient patients. It will cause stomach discomfort, bloating and diarrhea. It is usually contracted from water or contaminated fruit. Your immunologist should be familiar with this problem. It is treated with a special family of antibiotics. The anal itching might be pin worms. Is the itching worse at night? Pin worms are very common for all children. They usually get them from other children or from playing in the dirt -(according to my trusty medical reference book ) We have not had any problems with blood in the urine. We had kidney reflux and kidney infections. Keep bringing up to you physician. Hope this helps. Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 1999 Report Share Posted March 4, 1999 I am a student nurse at JPS Institute for Health Career Development and one of the side effects/adverse reactions to antibiotic therapy is what they call " super-infections " which are like thrush, yeast, sudomembranous colitis (raging diarrhea). When Adam had it, the doctor did routine stool cultures and treated him with Acidophilus to replace the good bacteria in his intestinal tract (you can by it at health food stores) and there was a prescription medication. I don't remember the name right off but it caused a bad metalic taste in his mouth and he would gag and spit it up every time we gave it to him because the taste was so bad (it was purple...can anyone think what it's called?). Anyway, he was better after about 2 rounds of the prescription med and we kept him on the Acidophilus to prevent future episodes. His only problem in that area now is stomach aches and light fatty clay stools. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 1999 Report Share Posted March 4, 1999 Gail, He has been tested for pinworms and found to be negative. He took the medication for this as a precaution anyway. Thanks, Donna Quote Link to comment Share on other sites More sharing options...
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