Guest guest Posted August 5, 2001 Report Share Posted August 5, 2001 Tyler, my grandson always has loose bowels, and in 6 months has only gained 1/2 pound, and they say he may not have gained that, it could be the scales difference. Why do they have the loose bowels, the doctor says it is not the IVIG, but i really do think it is a side effect, he always has loose bowels really bad for a couple of days following his IVIG infusion. My grandson has atypical mycobacterial infection (non infectious tuberculosis), are there any other children with this infection?? How did your doctor handle it??? with antibiotics or not??? I am not sure I responded properly to this system. I hope I did, if any one sees this message and has a few pointers, please let me know how to use this support group, i really need dummy directions , grandmother to tyler, SCID, osteomyelitis, atypical mycobacterial infection (non infectious tuberculosis) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2001 Report Share Posted August 5, 2001 Dear , Welcome to the group. Apparently you are doing everything just right because I got your message. I would assume that everyone else did, too. Basically, you are a member now of a very special group of people, mostly parents who all talk at once! Anything you post goes to everyone, and everything they post comes to you (if everything works properly). Now, with everybody talking at once and e-mails flying -- sometimes I read a post and say to myself -- sorry I don't have any information to help you concerning mycobacteria -- so I don't bother to respond. If everyone responded to everything -- we'd really be getting lots of mail!!! But, what if everyone decides not to repond -- then you don't get the help you need. Believe me it happens! Your job is to post the question again until somebody notices that you need help!!! Thanks for giving us a second chance!!! Loose bowels, no growth -- those things sound VERY familiar with this group of kids. One thing my doctor has cautioned me about, and I occasionally have to remind her -- is to not blame everything on a particular diagnosis and overlook other problems. Your doctor may be focusing on the mycobacteria aspects and forgetting some basic PID problems. Some things you and your doctor need to explore is bacterial overgrowth in the gut, giardia or other parasite in the gut, lactose intolerance, and Chrohn's disease. I just noticed that your grandson is diagnosed with SCID. I know that there is a separate group of parents who have a similar e-mail group that all the kids have a SCID diagnosis. That group might be able to give you more accurate information as related to SCID. All of our kids have a primary immune deficiency, but not SCID which has a lot more complications and implications. Let us know if you need that address -- I'm sure someone in the group has it. Best wishes to you. It's hard watching a child suffer. May God bless you as you seek answers for this little one. In His service, Dale rainbowacw@... wrote: > > Tyler, my grandson always has loose bowels, and in 6 months has only gained > 1/2 pound, and they say he may not have gained that, it could be the scales > difference. Why do they have the loose bowels, the doctor says it is not the > IVIG, but i really do think it is a side effect, he always has loose bowels > really bad for a couple of days following his IVIG infusion. > > My grandson has atypical mycobacterial infection (non infectious > tuberculosis), are there any other children with this infection?? How did > your doctor handle it??? with antibiotics or not??? > > I am not sure I responded properly to this system. I hope I did, if any one > sees this message and has a few pointers, please let me know how to use this > support group, i really need dummy directions > > , grandmother to tyler, SCID, osteomyelitis, atypical mycobacterial > infection (non infectious tuberculosis) > > > 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 August 5, 2001 Report Share Posted August 5, 2001 - how did they find the atypical mycobacterial infection? Macey has calcified granulomas in her chest and they say it could be from a histiocytosis or a past TB infection that came and went pretty quietly. Which I've never heard of TB being a quiet illness but hey they're the doctors. I did not know there was a non-infectious TB. I'd like to know more about this. Ursula Holleman uahollem@... and Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://www.pedpid.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2001 Report Share Posted August 5, 2001 Hi Dale. Im Mother to ie. I had posted questions about bowel problems also and got no responses. THanks for answereing the Gmother of Tyler. ie is also having bowel problems. Loose bowels all the time and no weight gain. He is however not SCID only HypoGammaglobulinemia. and other issues. We are going to Gastro on the 23rd. He has already been tested for parasites, and will be tested for Glueten antibodies next week. They dont feel its malabsorbtion because all his labs are ok. Im seeing more and more postings as I get further into the net (IDF and PEdPID ) and I really need find more answers. ie has dropped from 25th percentile to under 5th percentile in 6 months. Is there anyone who can give me advice. Thanks Mother to FRAnkie Hypogammaglobulinemia, Undiagnosed syndrome, hear vis impaired, seizure disorder, developemental delay, arachnoid cyst posterior fossa etc.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2001 Report Share Posted August 5, 2001 Hi Dale. Im Mother to ie. I had posted questions about bowel problems also and got no responses. THanks for answereing the Gmother of Tyler. ie is also having bowel problems. Loose bowels all the time and no weight gain. He is however not SCID only HypoGammaglobulinemia. and other issues. We are going to Gastro on the 23rd. He has already been tested for parasites, and will be tested for Glueten antibodies next week. They dont feel its malabsorbtion because all his labs are ok. Im seeing more and more postings as I get further into the net (IDF and PEdPID ) and I really need find more answers. ie has dropped from 25th percentile to under 5th percentile in 6 months. Is there anyone who can give me advice. Thanks Mother to FRAnkie Hypogammaglobulinemia, Undiagnosed syndrome, hear vis impaired, seizure disorder, developemental delay, arachnoid cyst posterior fossa etc.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2001 Report Share Posted August 5, 2001 Hi Dale. Im Mother to ie. I had posted questions about bowel problems also and got no responses. THanks for answereing the Gmother of Tyler. ie is also having bowel problems. Loose bowels all the time and no weight gain. He is however not SCID only HypoGammaglobulinemia. and other issues. We are going to Gastro on the 23rd. He has already been tested for parasites, and will be tested for Glueten antibodies next week. They dont feel its malabsorbtion because all his labs are ok. Im seeing more and more postings as I get further into the net (IDF and PEdPID ) and I really need find more answers. ie has dropped from 25th percentile to under 5th percentile in 6 months. Is there anyone who can give me advice. Thanks Mother to FRAnkie Hypogammaglobulinemia, Undiagnosed syndrome, hear vis impaired, seizure disorder, developemental delay, arachnoid cyst posterior fossa etc.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2001 Report Share Posted August 5, 2001 Hi --I don't have any answers to your questions. . .just didn't want you to think that no one was listening. Autumn doesn't have weight issues--in fact, just the opposite. She eats quite a bit when she's on the steroids for asthma & she's in the 90% percentile on weight. Her height is normal. . .we have a round- chested little girl! Right now she's doing great--best in months. So great I've scheduled her immuno profile blood draw for in the a.m. It will be the first time she's had her blood drawn when she's well. It'll be interesting to see the #'s. The last blood draw was in Dec when we went to NJH--they didn't do IgG subclasses, though. The one prior to that was Oct. All of her previous blood draws she was on antibiotics for an infection of some kind. Autumn did have some bowel problems about a year-18 months ago. Hers was constipation, though. Sorry I can't help more. Ray, mother to Tabitha (5), Autumn, 3 (IgG def., asthma, chronic sinusitis, and allergies), and Duncan Avery, 2 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2001 Report Share Posted August 5, 2001 Hi --I don't have any answers to your questions. . .just didn't want you to think that no one was listening. Autumn doesn't have weight issues--in fact, just the opposite. She eats quite a bit when she's on the steroids for asthma & she's in the 90% percentile on weight. Her height is normal. . .we have a round- chested little girl! Right now she's doing great--best in months. So great I've scheduled her immuno profile blood draw for in the a.m. It will be the first time she's had her blood drawn when she's well. It'll be interesting to see the #'s. The last blood draw was in Dec when we went to NJH--they didn't do IgG subclasses, though. The one prior to that was Oct. All of her previous blood draws she was on antibiotics for an infection of some kind. Autumn did have some bowel problems about a year-18 months ago. Hers was constipation, though. Sorry I can't help more. Ray, mother to Tabitha (5), Autumn, 3 (IgG def., asthma, chronic sinusitis, and allergies), and Duncan Avery, 2 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2001 Report Share Posted August 6, 2001 Does he have an IgA deficiency? Since IgA is carried in the gut then alot of IgA deficient patients have problems with bacterial overgrowth (requires a simple breath test, Macey had to do it at 3 yrs old and did fine). Have they done a 48 hr stool collection to look for fat %? Does he have stomach pains too? H.Pylori infection comes to mind then. How is his appetite? Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://home.att.net/~maceyh/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2001 Report Share Posted August 6, 2001 Does he have an IgA deficiency? Since IgA is carried in the gut then alot of IgA deficient patients have problems with bacterial overgrowth (requires a simple breath test, Macey had to do it at 3 yrs old and did fine). Have they done a 48 hr stool collection to look for fat %? Does he have stomach pains too? H.Pylori infection comes to mind then. How is his appetite? Ursula Holleman Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux, Sensory Integration Disorder, Diabetes Insipidus) http://home.att.net/~maceyh/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2001 Report Share Posted August 6, 2001 Hi . Thanks so much for writting back. I have to ask you, While reading alot of postings, it seems that most peoples bloods are only drawn periodically, while ies is drawn at his peak and Troft. Im glad that Autumn is doing so well. ie too in fact theyre spreading his infusions out to every six weeks to see if hell drop too much. So far he drops about 200 IGg points between his peak and troft, It seems to be fairly consistent. Well see. Thanks again JEnnifer Mom of ie (Hypogammaglobulinemia, undiagnosed syndrome, Dev. Delay, hear & vis impaired, Seizure disorder, Arachnoid cyst posterior fossa, ch. sin, chr. om, MCC etc...) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2001 Report Share Posted August 6, 2001 Hi . Thanks so much for writting back. I have to ask you, While reading alot of postings, it seems that most peoples bloods are only drawn periodically, while ies is drawn at his peak and Troft. Im glad that Autumn is doing so well. ie too in fact theyre spreading his infusions out to every six weeks to see if hell drop too much. So far he drops about 200 IGg points between his peak and troft, It seems to be fairly consistent. Well see. Thanks again JEnnifer Mom of ie (Hypogammaglobulinemia, undiagnosed syndrome, Dev. Delay, hear & vis impaired, Seizure disorder, Arachnoid cyst posterior fossa, ch. sin, chr. om, MCC etc...) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2001 Report Share Posted August 6, 2001 , Autumn is not on IVIG, so we draw her levels about 2-3 times per year. I think it greatly depends on the dr & their preference to follow a particular child. Right now the ped is still hopeful that she will outgrow her deficiency. He and I both agree that it will be interesting to compare this last set of results since she was " perfect " today (in his opinion). She screamed horribly while they drew blood today. It takes 2 nurses plus one of us to hold her down while someone else draws blood. They tell me she's stronger than most boys when it comes to shots, etc. I'll be out of town Wed-Friday, so I'll get results back on Monday. Ray, mother to Tabitha (5), Autumn, 3 (IgG def., asthma, chronic sinusitis, and allergies), and Duncan Avery, 2 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2001 Report Share Posted August 6, 2001 Hi , I have a son, now 13, with a current diagnosis of CVID. When he was a baby/toddler he had lots of diarreah and also some constipation. He also had chronic daily vomiting that got worse with any illness. At age 1 1/2 he was scoped throroughly and found to be ok. (endoscopy and another) He also had no appetite. They suspected malabsorption after various tests were negative and did a 72 hour fecal fat. He was malabsorbing (age was 2 1/2) and the docs did 2 sweat tests for CF. They were negative. He began taking Pancrease MT enzymes and his stools improved. He also began to gain weight slowly. His appetite did not improve though. He also had the diagnosis of Hypogammaglobulinemia. The immuno has recently used the CVID. This is just my son's experience with the loose stools.I hope this isn't too confusing. Jan Djddf@... wrote: > Hi Dale. Im Mother to ie. I had posted questions about bowel > problems also and got no responses. THanks for answereing the Gmother of > Tyler. ie is also having bowel problems. Loose bowels all the time and > no weight gain. He is however not SCID only HypoGammaglobulinemia. and other > issues. We are going to Gastro on the 23rd. He has already been tested for > parasites, and will be tested for Glueten antibodies next week. They dont > feel its malabsorbtion because all his labs are ok. Im seeing more and more > postings as I get further into the net (IDF and PEdPID ) and I really need > find more answers. ie has dropped from 25th percentile to under 5th > percentile in 6 months. Is there anyone who can give me advice. > Thanks > Mother to FRAnkie Hypogammaglobulinemia, Undiagnosed syndrome, hear vis > impaired, seizure disorder, developemental delay, arachnoid cyst posterior > fossa etc.. > > > 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 August 6, 2001 Report Share Posted August 6, 2001 Hi , I have a son, now 13, with a current diagnosis of CVID. When he was a baby/toddler he had lots of diarreah and also some constipation. He also had chronic daily vomiting that got worse with any illness. At age 1 1/2 he was scoped throroughly and found to be ok. (endoscopy and another) He also had no appetite. They suspected malabsorption after various tests were negative and did a 72 hour fecal fat. He was malabsorbing (age was 2 1/2) and the docs did 2 sweat tests for CF. They were negative. He began taking Pancrease MT enzymes and his stools improved. He also began to gain weight slowly. His appetite did not improve though. He also had the diagnosis of Hypogammaglobulinemia. The immuno has recently used the CVID. This is just my son's experience with the loose stools.I hope this isn't too confusing. Jan Djddf@... wrote: > Hi Dale. Im Mother to ie. I had posted questions about bowel > problems also and got no responses. THanks for answereing the Gmother of > Tyler. ie is also having bowel problems. Loose bowels all the time and > no weight gain. He is however not SCID only HypoGammaglobulinemia. and other > issues. We are going to Gastro on the 23rd. He has already been tested for > parasites, and will be tested for Glueten antibodies next week. They dont > feel its malabsorbtion because all his labs are ok. Im seeing more and more > postings as I get further into the net (IDF and PEdPID ) and I really need > find more answers. ie has dropped from 25th percentile to under 5th > percentile in 6 months. Is there anyone who can give me advice. > Thanks > Mother to FRAnkie Hypogammaglobulinemia, Undiagnosed syndrome, hear vis > impaired, seizure disorder, developemental delay, arachnoid cyst posterior > fossa etc.. > > > 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 August 6, 2001 Report Share Posted August 6, 2001 Hi , I have a son, now 13, with a current diagnosis of CVID. When he was a baby/toddler he had lots of diarreah and also some constipation. He also had chronic daily vomiting that got worse with any illness. At age 1 1/2 he was scoped throroughly and found to be ok. (endoscopy and another) He also had no appetite. They suspected malabsorption after various tests were negative and did a 72 hour fecal fat. He was malabsorbing (age was 2 1/2) and the docs did 2 sweat tests for CF. They were negative. He began taking Pancrease MT enzymes and his stools improved. He also began to gain weight slowly. His appetite did not improve though. He also had the diagnosis of Hypogammaglobulinemia. The immuno has recently used the CVID. This is just my son's experience with the loose stools.I hope this isn't too confusing. Jan Djddf@... wrote: > Hi Dale. Im Mother to ie. I had posted questions about bowel > problems also and got no responses. THanks for answereing the Gmother of > Tyler. ie is also having bowel problems. Loose bowels all the time and > no weight gain. He is however not SCID only HypoGammaglobulinemia. and other > issues. We are going to Gastro on the 23rd. He has already been tested for > parasites, and will be tested for Glueten antibodies next week. They dont > feel its malabsorbtion because all his labs are ok. Im seeing more and more > postings as I get further into the net (IDF and PEdPID ) and I really need > find more answers. ie has dropped from 25th percentile to under 5th > percentile in 6 months. Is there anyone who can give me advice. > Thanks > Mother to FRAnkie Hypogammaglobulinemia, Undiagnosed syndrome, hear vis > impaired, seizure disorder, developemental delay, arachnoid cyst posterior > fossa etc.. > > > 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 August 7, 2001 Report Share Posted August 7, 2001 Ray, just a thought which may or may not be a good one. It has always been an extremely traumatic experience for when he has blood drawn, his veins are very difficult to find and usually require multiple tries because they are so fine. The last blood draw we tried with him sitting on my lap, in the adult chairs rather than on the bed. I have been taking him to my weekly blood draw for my INR levels, and he is fascinated watching on my lap the whole procedure. It was in the hope that this would make it easier on him that I started to do this. I hadnt thought to try him sitting, too, but he panicked thinking he was going to have an LP, and I relised if we did it off the bed he would calm down a little knowing that was not going to happen. Sitting he did not need 2 nurses plus me to hold him down, I think its the feeling of having absolutely no control over the situation by being held down that is the worst thing for them. > She screamed horribly while they drew blood today. It > takes 2 nurses plus one of us to hold her down while someone else > draws blood. They tell me she's stronger than most boys when it > comes to shots, etc. I'll be out of town Wed-Friday, so I'll get > results back on Monday. > > Ray, mother to Tabitha (5), Autumn, 3 (IgG def., asthma, > chronic sinusitis, and allergies), and Duncan Avery, 2 months > > > > 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 August 7, 2001 Report Share Posted August 7, 2001 Ray, just a thought which may or may not be a good one. It has always been an extremely traumatic experience for when he has blood drawn, his veins are very difficult to find and usually require multiple tries because they are so fine. The last blood draw we tried with him sitting on my lap, in the adult chairs rather than on the bed. I have been taking him to my weekly blood draw for my INR levels, and he is fascinated watching on my lap the whole procedure. It was in the hope that this would make it easier on him that I started to do this. I hadnt thought to try him sitting, too, but he panicked thinking he was going to have an LP, and I relised if we did it off the bed he would calm down a little knowing that was not going to happen. Sitting he did not need 2 nurses plus me to hold him down, I think its the feeling of having absolutely no control over the situation by being held down that is the worst thing for them. > She screamed horribly while they drew blood today. It > takes 2 nurses plus one of us to hold her down while someone else > draws blood. They tell me she's stronger than most boys when it > comes to shots, etc. I'll be out of town Wed-Friday, so I'll get > results back on Monday. > > Ray, mother to Tabitha (5), Autumn, 3 (IgG def., asthma, > chronic sinusitis, and allergies), and Duncan Avery, 2 months > > > > 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 August 7, 2001 Report Share Posted August 7, 2001 Ray, just a thought which may or may not be a good one. It has always been an extremely traumatic experience for when he has blood drawn, his veins are very difficult to find and usually require multiple tries because they are so fine. The last blood draw we tried with him sitting on my lap, in the adult chairs rather than on the bed. I have been taking him to my weekly blood draw for my INR levels, and he is fascinated watching on my lap the whole procedure. It was in the hope that this would make it easier on him that I started to do this. I hadnt thought to try him sitting, too, but he panicked thinking he was going to have an LP, and I relised if we did it off the bed he would calm down a little knowing that was not going to happen. Sitting he did not need 2 nurses plus me to hold him down, I think its the feeling of having absolutely no control over the situation by being held down that is the worst thing for them. > She screamed horribly while they drew blood today. It > takes 2 nurses plus one of us to hold her down while someone else > draws blood. They tell me she's stronger than most boys when it > comes to shots, etc. I'll be out of town Wed-Friday, so I'll get > results back on Monday. > > Ray, mother to Tabitha (5), Autumn, 3 (IgG def., asthma, > chronic sinusitis, and allergies), and Duncan Avery, 2 months > > > > 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 August 7, 2001 Report Share Posted August 7, 2001 , Thanks for the thought--we tried sitting down also. It's worse. She kicks & screams & bruises the nurse. She knows what's going on when we draw blood. I tell her everything up front, before we ever get there. Then, I try to prepare her as much as possible. Her favorite nurse is always in the room with her and that has some calming effect aftwards. Autumn just has a terrible fear of needles--who can blame her? I truly think what did her in was having the home health nurse not be able to get an IV to stay in her arm & having to restart it 4 different times before the dr finally said enough! So, we'll just have to keep on trying to get her to be calm for us and holding her down when we need to. Ray, mom to Tabitha (age 5), Autumn, age 3 (IgG def., asthma, chronic sinusitis, and allergies), and Duncan Avery, 2 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2001 Report Share Posted August 7, 2001 , Thanks for the thought--we tried sitting down also. It's worse. She kicks & screams & bruises the nurse. She knows what's going on when we draw blood. I tell her everything up front, before we ever get there. Then, I try to prepare her as much as possible. Her favorite nurse is always in the room with her and that has some calming effect aftwards. Autumn just has a terrible fear of needles--who can blame her? I truly think what did her in was having the home health nurse not be able to get an IV to stay in her arm & having to restart it 4 different times before the dr finally said enough! So, we'll just have to keep on trying to get her to be calm for us and holding her down when we need to. Ray, mom to Tabitha (age 5), Autumn, age 3 (IgG def., asthma, chronic sinusitis, and allergies), and Duncan Avery, 2 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2001 Report Share Posted August 7, 2001 , Thanks for the thought--we tried sitting down also. It's worse. She kicks & screams & bruises the nurse. She knows what's going on when we draw blood. I tell her everything up front, before we ever get there. Then, I try to prepare her as much as possible. Her favorite nurse is always in the room with her and that has some calming effect aftwards. Autumn just has a terrible fear of needles--who can blame her? I truly think what did her in was having the home health nurse not be able to get an IV to stay in her arm & having to restart it 4 different times before the dr finally said enough! So, we'll just have to keep on trying to get her to be calm for us and holding her down when we need to. Ray, mom to Tabitha (age 5), Autumn, age 3 (IgG def., asthma, chronic sinusitis, and allergies), and Duncan Avery, 2 months Quote Link to comment Share on other sites More sharing options...
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