Guest guest Posted May 31, 2002 Report Share Posted May 31, 2002 has just turned 18, and I can probably count on 1 hand, perhaps a few fingers more, the number of times she's had a fever. She had pneumonia without one! Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2002 Report Share Posted May 31, 2002 Eve, I have found that 's temperature tends to run low, most of the time. High fevers have never been a big issue for him. His thyroid was check a couple of years ago, but not recently. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2002 Report Share Posted May 31, 2002 Eve, I have found that 's temperature tends to run low, most of the time. High fevers have never been a big issue for him. His thyroid was check a couple of years ago, but not recently. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2002 Report Share Posted May 31, 2002 Eve, I have found that 's temperature tends to run low, most of the time. High fevers have never been a big issue for him. His thyroid was check a couple of years ago, but not recently. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2002 Report Share Posted May 31, 2002 Great question and it would be interesting to find out. When Patty was a baby she would go to 105/106 no problem. Then suddenly when she got ill she would not get any fever. Hasn't had a fever in years. I mean about 10 years though at times she's been very ill. I was told there is some sort of gland in the brain that no longer controls that for her. What about the others? Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 s " normal " temp is between 96.7 and 97.7 but when he had RSV and the flue he got up to 102.5 http://community.webtv.net/maryechick12/ http://community.webtv.net/maryechick12/pets Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 s " normal " temp is between 96.7 and 97.7 but when he had RSV and the flue he got up to 102.5 http://community.webtv.net/maryechick12/ http://community.webtv.net/maryechick12/pets Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 s " normal " temp is between 96.7 and 97.7 but when he had RSV and the flue he got up to 102.5 http://community.webtv.net/maryechick12/ http://community.webtv.net/maryechick12/pets Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 I was thinking abou all of this. My temperature is normally 97.4 or so. When I get really sick it can get as high as 99. Once, when I had a severe case of the flu, it was 102. But mostly its only around 99 and doctors tend to think I'm not as sick as I am. Kay along with guide dog Smokey Re: Fevers > Great question and it would be interesting to find out. When Patty was a > baby she would go to 105/106 no problem. Then suddenly when she got ill she > would not get any fever. Hasn't had a fever in years. I mean about 10 years > though at times she's been very ill. I was told there is some sort of gland > in the brain that no longer controls that for her. What about the others? > > Bonnie > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > 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 > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 I was thinking abou all of this. My temperature is normally 97.4 or so. When I get really sick it can get as high as 99. Once, when I had a severe case of the flu, it was 102. But mostly its only around 99 and doctors tend to think I'm not as sick as I am. Kay along with guide dog Smokey Re: Fevers > Great question and it would be interesting to find out. When Patty was a > baby she would go to 105/106 no problem. Then suddenly when she got ill she > would not get any fever. Hasn't had a fever in years. I mean about 10 years > though at times she's been very ill. I was told there is some sort of gland > in the brain that no longer controls that for her. What about the others? > > Bonnie > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > 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 > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 I was thinking abou all of this. My temperature is normally 97.4 or so. When I get really sick it can get as high as 99. Once, when I had a severe case of the flu, it was 102. But mostly its only around 99 and doctors tend to think I'm not as sick as I am. Kay along with guide dog Smokey Re: Fevers > Great question and it would be interesting to find out. When Patty was a > baby she would go to 105/106 no problem. Then suddenly when she got ill she > would not get any fever. Hasn't had a fever in years. I mean about 10 years > though at times she's been very ill. I was told there is some sort of gland > in the brain that no longer controls that for her. What about the others? > > Bonnie > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > 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 > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 I was told with s heart problems he wouldn't be able to tolerate the heat very well so of course when it shot up to 90 in march we got very nervous hahaha he LOVES it when its hot out his SATS are best when it is hot figure that one out....But then they (the doctors ) said he wold need his next heart surgery when he was between 6 and nine months or 10 and 12 pounds...he is 8 months and 12 pounds and his SATS like I said are never below 85 ...The signal that he needs the next one are sats in the low 70s high 60s he hast hit 79 in weeks let alone low 70s ,,,,He does have thyroid and parathyroid issues though.............. http://community.webtv.net/maryechick12/ http://community.webtv.net/maryechick12/pets Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 I was told with s heart problems he wouldn't be able to tolerate the heat very well so of course when it shot up to 90 in march we got very nervous hahaha he LOVES it when its hot out his SATS are best when it is hot figure that one out....But then they (the doctors ) said he wold need his next heart surgery when he was between 6 and nine months or 10 and 12 pounds...he is 8 months and 12 pounds and his SATS like I said are never below 85 ...The signal that he needs the next one are sats in the low 70s high 60s he hast hit 79 in weeks let alone low 70s ,,,,He does have thyroid and parathyroid issues though.............. http://community.webtv.net/maryechick12/ http://community.webtv.net/maryechick12/pets Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 I was told with s heart problems he wouldn't be able to tolerate the heat very well so of course when it shot up to 90 in march we got very nervous hahaha he LOVES it when its hot out his SATS are best when it is hot figure that one out....But then they (the doctors ) said he wold need his next heart surgery when he was between 6 and nine months or 10 and 12 pounds...he is 8 months and 12 pounds and his SATS like I said are never below 85 ...The signal that he needs the next one are sats in the low 70s high 60s he hast hit 79 in weeks let alone low 70s ,,,,He does have thyroid and parathyroid issues though.............. http://community.webtv.net/maryechick12/ http://community.webtv.net/maryechick12/pets Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 This is also true of my non-CHARGE son. He runs lower than normal regularly and doesn't have a fever every time he's sick. He rarely gets a high (101+) fever. He's had a long history with strep throat but doesn't run a fever with it. We just know by the feel of his throat and the sound of his voice when it's time to get a culture. Now that I think about it, it's true for Aubrie. She doesn't run high fevers. Even when she gets ear infections, she doesn't have a fever. I know she's ill when she doesn't sleep through the night or her ear drains. Maybe this isn't so much a CHARGE thing but just a common thing. After all, the regular temp of 98.6 is just a statistical average, right? Interesting in any case... Michele W mom to Aubrie (4.5 yrs) CHaRgE and (10 yrs) Re: Fevers > > > > Great question and it would be interesting to find out. When Patty was a > > baby she would go to 105/106 no problem. Then suddenly when she got ill > she > > would not get any fever. Hasn't had a fever in years. I mean about 10 > years > > though at times she's been very ill. I was told there is some sort of > gland > > in the brain that no longer controls that for her. What about the others? > > > > Bonnie > > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation. > > 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 > > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > > July 25-27, 2003. Information will be available at our website > > www.chargesyndrome.org or by calling 1-. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 This is also true of my non-CHARGE son. He runs lower than normal regularly and doesn't have a fever every time he's sick. He rarely gets a high (101+) fever. He's had a long history with strep throat but doesn't run a fever with it. We just know by the feel of his throat and the sound of his voice when it's time to get a culture. Now that I think about it, it's true for Aubrie. She doesn't run high fevers. Even when she gets ear infections, she doesn't have a fever. I know she's ill when she doesn't sleep through the night or her ear drains. Maybe this isn't so much a CHARGE thing but just a common thing. After all, the regular temp of 98.6 is just a statistical average, right? Interesting in any case... Michele W mom to Aubrie (4.5 yrs) CHaRgE and (10 yrs) Re: Fevers > > > > Great question and it would be interesting to find out. When Patty was a > > baby she would go to 105/106 no problem. Then suddenly when she got ill > she > > would not get any fever. Hasn't had a fever in years. I mean about 10 > years > > though at times she's been very ill. I was told there is some sort of > gland > > in the brain that no longer controls that for her. What about the others? > > > > Bonnie > > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation. > > 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 > > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > > July 25-27, 2003. Information will be available at our website > > www.chargesyndrome.org or by calling 1-. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 This is also true of my non-CHARGE son. He runs lower than normal regularly and doesn't have a fever every time he's sick. He rarely gets a high (101+) fever. He's had a long history with strep throat but doesn't run a fever with it. We just know by the feel of his throat and the sound of his voice when it's time to get a culture. Now that I think about it, it's true for Aubrie. She doesn't run high fevers. Even when she gets ear infections, she doesn't have a fever. I know she's ill when she doesn't sleep through the night or her ear drains. Maybe this isn't so much a CHARGE thing but just a common thing. After all, the regular temp of 98.6 is just a statistical average, right? Interesting in any case... Michele W mom to Aubrie (4.5 yrs) CHaRgE and (10 yrs) Re: Fevers > > > > Great question and it would be interesting to find out. When Patty was a > > baby she would go to 105/106 no problem. Then suddenly when she got ill > she > > would not get any fever. Hasn't had a fever in years. I mean about 10 > years > > though at times she's been very ill. I was told there is some sort of > gland > > in the brain that no longer controls that for her. What about the others? > > > > Bonnie > > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation. > > 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 > > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > > July 25-27, 2003. Information will be available at our website > > www.chargesyndrome.org or by calling 1-. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 With Dylan it seems that along with the other nervous system components, that he does not regulate his temperature well at all. He cannot tolerate being out in the heat. He becomes clammy (cold, sweats) and pale rather than flushed and sweating, and if out long enough will have a migraine. (First one at age 4 months after being outside for 5 minutes). His normal body temperature tends to be low. If he is " off " his temp will only be 99, but he acts like it is much higher. He also had periods of fevers of unknown origin - temps of 104 degrees - with no identifiable source of infection. These episodes were very frequent before he started having osteopathic manipulations. The DO who does the manipulations feels that the fevers indicate a stressor to the central nervous system, not necessarily an infection. Kim Mother to Dylan 5, Kayla 11, Tyler 14, wife to Roy ---------- > >To: CHARGE >Subject: Fevers >Date: Thu, May 30, 2002, 12:49 PM > > Hi everyone; > I was just wondering how common it was for CHARGE children *not* to run a > fever with illness. Tyler never seems to. He'll become clammy feeling > instead. > Take care, Eve (foster Mom to cHARGe'r Tyler, 23 months) > > _________________________________________________________________ > Join the world’s largest e-mail service with MSN Hotmail. > http://www.hotmail.com > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation. > 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 > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 In our family, my older daughter and I run quite high fevers. My husband and do not. So, I guess it might not be a CHARGE " thing, " but I still think 's lack of fevers so consistently is odd --- but maybe that's just because that's not what I do when sick... We need data! Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 Martha - From the keyboard of : > In our family, my older daughter and I run quite high fevers. My husband and > do not. So, I guess it might not be a CHARGE " thing, " but I still > think 's lack of fevers so consistently is odd --- but maybe that's > just because that's not what I do when sick... We need data! Martha As another data point (or two :-), (non-CHARGE) only ran a temp for an ear infection once even tho' he had recurrent ones for a few years (probably between 15 & 20, or more). I always knew based solely on his behavior. My neighbors kids also don't run fevers for ear infections and our common pedi doesn't seem to think that this is strange at all. So, I think it's just a common thing for many people to stop running temps past some point in life (perhaps soon after infancy). Debbie PS We didn't have Sara long enough to know how she was with fevers. -- +== Debbie Tropiano == Mommy to 8/17/95 & ^Sara^ 10/25/00-11/7/00 ==+ | God shows His opposition to cancer and birth defects, not by | | eliminating them or making them happen only to bad people (He | | can't do that), but by summoning forth friends and neighbors to | | ease the burden and to fill the emptiness. -- Harold S. Kushner | +== debbie@... ============= URL http://www.icus.com/personal.html ==+ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 doesn't get fevers, even with infections, pneumonia, etc. Another weird CHARGE idiosyncracy>?> Re: Fevers > In our family, my older daughter and I run quite high fevers. My husband and > do not. So, I guess it might not be a CHARGE " thing, " but I still > think 's lack of fevers so consistently is odd --- but maybe that's > just because that's not what I do when sick... We need data! Martha > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > 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 > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 doesn't get fevers, even with infections, pneumonia, etc. Another weird CHARGE idiosyncracy>?> Re: Fevers > In our family, my older daughter and I run quite high fevers. My husband and > do not. So, I guess it might not be a CHARGE " thing, " but I still > think 's lack of fevers so consistently is odd --- but maybe that's > just because that's not what I do when sick... We need data! Martha > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > 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 > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 This is all very interesting. There have been a few times lately when I've thought that something hasn't been quite right with Jack but his temp has been ok. He used to get really high temps (103-104) when he had UTI's but hasn't had a high temp for almost a year. Maybe he did have a UTI or something and I didn't pick it up because his temp was ok. You've got me wondering. I'm going to be more vigilant in future and take a urine sample next time I suspect something is wrong. Elaine, mum to Elise (10yrs) & Jack (4.5yrs) CHaRGE Dumfries, Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 This is all very interesting. There have been a few times lately when I've thought that something hasn't been quite right with Jack but his temp has been ok. He used to get really high temps (103-104) when he had UTI's but hasn't had a high temp for almost a year. Maybe he did have a UTI or something and I didn't pick it up because his temp was ok. You've got me wondering. I'm going to be more vigilant in future and take a urine sample next time I suspect something is wrong. Elaine, mum to Elise (10yrs) & Jack (4.5yrs) CHaRGE Dumfries, Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 Since CHARGE is thought to be genetic, the fact that other family members may not run fevers, or may have different ways their bodies indicate infection or illness than is most often considered typical, may just be a confirmation of the genetic component. Martha, I agree that we need data and information on these topics. One way we could do something is to gather information on some of these topics and approach researchers that we know or suspect to have interest in these issues. Researchers are often quite focused in their interests so finding the right one can be a bit of a trick. Mom to Kendra, and Camille At 09:54 PM 5/31/02 -0500, you wrote: >In our family, my older daughter and I run quite high fevers. My husband and > do not. So, I guess it might not be a CHARGE " thing, " but I still >think 's lack of fevers so consistently is odd --- but maybe that's >just because that's not what I do when sick... We need data! Martha Quote Link to comment Share on other sites More sharing options...
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