Guest guest Posted March 13, 2006 Report Share Posted March 13, 2006 My two SDS kiddos run lower than normal temps. Their normal temps are 97.4-97.8 Brittany is 97.4 also. Usually after IVIG she is 98.0 or so and she is usually says she is hot. Last time her temp. didn't rise though. Janet mom to Brittany CVID age 15 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2006 Report Share Posted March 13, 2006 - I hear ya. = ) Janet and - Many of our kids have temperature regulation problems -- this is consistent with immune irregularities and systemic inflammation or sepsis. If the nurses don't know this, tell them!!!!! It can be dangerous and should not be minimized. For example, serious bacterial infections at any body site, with or without bacteria going into the blood can cause a high or low temp. A sign of sepsis may include: temp > 38°C (100.4°F) or < 36°C (96.8 °F) Other signs: increased heart rate, problems breathing, altered mental status, lethargy, decreased urine output, etc. Reference: http://www.emedicine.com/MED/topic2101.htm Our daughter often ran 97.0 degrees before showing " classic " signs of a severe infection. Low temps should not be minimized. , I would suggest that you keep track of your baby's signs/symptoms and bloodwork/temps to see how things match up. It might be useful to see how your child compares against herself, rather than against another " normal " child (that may rarely run low), so that you can see if there is real improvement with IVIG, for example. Nurses and docs love to use " normal ranges " as a measure of comparision for our kids and this just does not make sense all of the time. My daughter is always lower than the " average " child but her immune related numbers go up and down around HER average. We know what is low or high for her -- even though her " highs " are still low relative to a " normal " kid. Did I totally lose you here? = ) Our pumpkins are particularly vulnerable to infections and sepsis so it is important to pay attention to the low number too. Don't let anyone minimize you because your daughter is at risk here. Hold your ground. Let the group know a few days before you start IVIG. They will make sure you feel prepared. (mom to CVIDer) DAN ZANG <zanggang@...> wrote: A few days ago someone was talking about temperatures. It was mentioned that their PID's " normal " temp generally ran lower than normal. I have noticed that always seems to run low, to the point that they've had to put warming blankets on him so that his temp would be in the normal range for infusions. Does this happen with any of your PID's? I had not given it much thought until someone mentioned that when you normally have a low temp and you suddenly do spike a temp it is actually more concerning. Example, had a temp of 102.5 last week. As most doctors see, that is a spike of 4 degrees above normal, but in reality it is more like 6 or 7 degrees above " normal " . Thoughts? Janet mom to , age almost 9, XLA also mom to 5 other non PID's Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2006 Report Share Posted March 13, 2006 My two SDS kiddos run lower than normal temps. Their normal temps are 97.4-97.8 Peace Be With You, ~Pattie~ Piedmont Triad, NC Mom to , age 12 & healthy, , age 9, Shwachman-Diamond Syndrome and ph, age 8, Shwachman-Diamond Syndrome Our family website: www.shwachman.50megs.com _____ From: [mailto: ] On Behalf Of DAN ZANG Sent: Monday, March 13, 2006 1:11 PM Subject: " normal " temperatures? A few days ago someone was talking about temperatures. It was mentioned that their PID's " normal " temp generally ran lower than normal. I have noticed that always seems to run low, to the point that they've had to put warming blankets on him so that his temp would be in the normal range for infusions. Does this happen with any of your PID's? I had not given it much thought until someone mentioned that when you normally have a low temp and you suddenly do spike a temp it is actually more concerning. Example, had a temp of 102.5 last week. As most doctors see, that is a spike of 4 degrees above normal, but in reality it is more like 6 or 7 degrees above " normal " . Thoughts? Janet mom to , age almost 9, XLA also mom to 5 other non PID's Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2006 Report Share Posted March 13, 2006 > Many of our kids have temperature regulation problems -- this is consistent with immune irregularities and systemic inflammation or sepsis. It was funny (not so funny just ironic) when I read this because I had just called the doctor because Ana's rectal temp was 96.8. That seems really low to me but he didn't seem concerned. He said if it goes high then drops low, or if she shakes or shivers then to call him back. But this is the same doc who told me that up to 104 can be normal. She is not lethargic, just VERY sensitive, crabby, clingy. She is not eating and just gets these cold sweats when her temp goes that low. The doc said it might be a viral thing going on, which is annoying because we are still trying to kick the ear infection. He switched her to some other antibiotic I have to go pick up tomorrow. It better work. I'll just keep an eye on her temp I guess. She has her CF test tomorrow, woo hoo, fun couple of hours a the hospital. Ana, 13 mo, IgG def, FTT, reflux??, etc?? Quote Link to comment Share on other sites More sharing options...
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