Guest guest Posted September 30, 2000 Report Share Posted September 30, 2000 I've said it 100 times and maybe you all think I'm crazy but, I'll say it again. use to get unexplained fevers and always had another cold or congestion or cough all though her 1st 5 to 6 years of life. Since I've taken her to a naturalist (homopath) he chanced her diet and added some vitamins and low and behold no more fevers (maybe 3 in the last 3 years) and not to no colds (when she does get something it's gone within 48 hours without developing into an infection). I'm sorry but, if your child is getting sick a lot and the dr.'s can't really come up with any reason expect to say " it's a charge thing " . Why don't you try the natural therapy? I know a lot of people who have tryed it and they all agree that it really really has helped them and there children... Sorry if I stepped on anybodies toes with this...It's just my opinion.......'s mom > > Betsy > > We don't really have confirmation as to what exactly > caused the unexplained fevers but we haven't seen them > since she started on the gammaglobulin infusions. The > one theory is that it was due to her immune system > deficiency. The other theory is that they could've > been URIs. Some of the times her urine was > tested--not each time but some of the times, and only > once did it come back positive for an infection. So > the immune system deficiency seems most plausible. > > Unexplained fevers have been a problem for many > CHARGErs as well as a more serious reaction to colds. > Many of her drs didn't think to check for an immune > system deficiency earlier because of her upper and > lower respiratory problems (tracheomalacia, paralyzed > vocal chord and asthma) possibly causing a worse > reaction, but in fact we did get confirmation on an > immune deficiency. > > I would recommend all CHARGErs with unexplained fevers > or serious reactions to colds to have a thorough > workup by immunology. I bet we'll find that the > deficiency is typical in all CHARGErs. > > Jeanne > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2000 Report Share Posted September 30, 2000 Hi, I'm just catching up on my e-mails. Jack has had many unexplained fevers. The Dr's usually put it down to UTI's even when the urine comes back clear. I tend to agree that in Jack's case the fevers are very probably due to UTI's. Quite often his urine does test clear or has " heavy mixed growth " . He has also has pseudomonis a few times. I think it depends on what they try to grow in the labs and sometimes there is infection but they just don't identify it. With Jack he can have a very high fever and no other symptoms. Other times he has absolutely no symptoms at all. Anyway just to say that one cause of unexplained fevers could be UTI's and I would certainly have this checked out. Also, have a VCUG done if this has not been done. Good luck. Elaine mum to Elise (8yrs) & Jack (3yrs) CHaRGE Dumfries,Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2000 Report Share Posted September 30, 2000 , I'm all for that natural stuff. What kind of vitamins. Which ones do you use?? Foley MOM to 5, ( CHARGEr in heaven) and JIllian 2 1/2 cHaRGE Re: unexplained fevers > I've said it 100 times and maybe you all think I'm crazy but, I'll say it again. use to get unexplained fevers and always had another cold or congestion or cough all though her 1st 5 to 6 years of life. Since I've taken her to a naturalist (homopath) he chanced her diet and added some vitamins and low and behold no more fevers (maybe 3 in the last 3 years) and not to no colds (when she does get something it's gone within 48 hours without developing into an infection). I'm sorry but, if your child is getting sick a lot and the dr.'s can't really come up with any reason expect to say " it's a charge thing " . Why don't you try the natural therapy? I know a lot of people who have tryed it and they all agree that it really really has helped them and there children... > Sorry if I stepped on anybodies toes with this...It's just my opinion.......'s mom > > > > > > > Betsy > > > > We don't really have confirmation as to what exactly > > caused the unexplained fevers but we haven't seen them > > since she started on the gammaglobulin infusions. The > > one theory is that it was due to her immune system > > deficiency. The other theory is that they could've > > been URIs. Some of the times her urine was > > tested--not each time but some of the times, and only > > once did it come back positive for an infection. So > > the immune system deficiency seems most plausible. > > > > Unexplained fevers have been a problem for many > > CHARGErs as well as a more serious reaction to colds. > > Many of her drs didn't think to check for an immune > > system deficiency earlier because of her upper and > > lower respiratory problems (tracheomalacia, paralyzed > > vocal chord and asthma) possibly causing a worse > > reaction, but in fact we did get confirmation on an > > immune deficiency. > > > > I would recommend all CHARGErs with unexplained fevers > > or serious reactions to colds to have a thorough > > workup by immunology. I bet we'll find that the > > deficiency is typical in all CHARGErs. > > > > Jeanne > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2000 Report Share Posted October 1, 2000 I have to add here that when Patty was little she would spike fevers that they said was for no reason at all. Often we were told it was a VIRUS. Yes, they would be 105 to 106. We went to the emergency room in the beginning. After a while when they happened during the night I would just notify the doctor and take care of her myself because she was always alert, never lethargic. It took a few years but suddenly she didn't get them anymore. I think it was around age 5. What I mean by that is she didn't get any fever at all, ever, no matter how ill she was. Doctors didn't believe me. She also didn't complain when she had a UTI or ear infection,... So, with no fever and no pain they were hard to find. She even had strep in her blood system twice, no fever, phenomena, no fever, puss pouring out her ear, no fever. Well, lately it can go to a wapping 100, then no more. When Patty was diagnosed with CHARGE there was a doctor who said most CHARGE kids are like that and said that it was due to some kind of gland or something like that in the brain that is involved. I think it might have been in the thyroid but I don't know. He also said he wanted her T-cells tested because of immunity issues. But, you know what happens, he left and went somewhere else. This was a doctor who worked with many, many charge children. Just when you find someone who is knowledgeable about your child, they leave. Bonnie Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2000 Report Share Posted October 1, 2000 , I think they should both be tested, Kennedy had NO problems at all (no fevers or anything) but I wanted her tested and she had the reflux (albeit mild) in both kidneys. At least we are now aware of it and watching it with ultrasounds to check for kidney growth every 5-6 months and urine tests every 2 months or so to check for UTI's, before it develops into something serious. Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476 Re: unexplained fevers Thank you for everyone that wrote back. You all gave may some great ideas. Currently, we are awaiting blood and urine tests results back. We are also in the process of discussing the VCUG test. Any suggestions or things about the test I should be aware of? ANOTHER QUESTION>>>If and are identical twins but is the only one showing the unexplained fever should they both have the test done? I know should but not sure about his brother.Thank you again--you are all such a great support system! Murraywife to Jay and mom to twin Chargers and "5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2000 Report Share Posted October 1, 2000 Bonnie, I love reading your emails. Patty and Kim sound so much alike. Kims ENT informed me he is going to retire. I told him not until your finished with Kim! I can't imagine going to a new dr with charge. Take care. Lydia Turk22082@... wrote: I have to add here that when Patty was little she would spike fevers that they said was for no reason at all. Often we were told it was a VIRUS. Yes, they would be 105 to 106. We went to the emergency room in the beginning. After a while when they happened during the night I would just notify the doctor and take care of her myself because she was always alert, never lethargic. It took a few years but suddenly she didn't get them anymore. I think it was around age 5. What I mean by that is she didn't get any fever at all, ever, no matter how ill she was. Doctors didn't believe me. She also didn't complain when she had a UTI or ear infection,... So, with no fever and no pain they were hard to find. She even had strep in her blood system twice, no fever, phenomena, no fever, puss pouring out her ear, no fever. Well, lately it can go to a wapping 100, then no more. When Patty was diagnosed with CHARGE there was a doctor who said most CHARGE kids are like that and said that it was due to some kind of gland or something like that in the brain that is involved. I think it might have been in the thyroid but I don't know. He also said he wanted her T-cells tested because of immunity issues. But, you know what happens, he left and went somewhere else. This was a doctor who worked with many, many charge children. Just when you find someone who is knowledgeable about your child, they leave.BonnieBonnie"5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2000 Report Share Posted October 2, 2000 , I would advise that both boys have the VCUG test done. Elaine mum to Elise (8yrs) & Jack (3yrs) CHaRGE Dumfries,Scotland Quote Link to comment Share on other sites More sharing options...
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