Guest guest Posted October 8, 2006 Report Share Posted October 8, 2006 Hi Crissy, Our daughter Lily has had quite a few breaks; she has never had a clockwork period-icy to her episodes but they are usually every 4-6 weeks. She has gone a few months between episodes before, then had a resurgence of episodes closer together. She is six and a half. I have been documenting ALL her symptoms and complaints for the last four months and notice that she does seem to still have some sort of an episode without a high fever sometimes--lethargy, headache, dark circles, stomach ache, etc., but without documenting that stuff I didn't really see it in her bigger fever pattern. Which is a long way of saying that I'm not sure that she has had " breaks " , perhaps just periods of really really mild episodes. Anyway, hope that helps. Lots of luck with your visits with the specialist. (Lily, 6 1/2--fevering since infancy), Seattle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2006 Report Share Posted October 8, 2006 Hi, We have a break in fevers every single year like clockwork. He just turned 5 and has been fevering since 4 mos old. However in the fall they spread apart and get real mild then go away. However since learning about periodic fevers and the 'symptoms' a year ago, we do see some type of episode even if the fever doesn't come or is real mild and likely overlooked in the earlier years when we had no idea what was going on. He had one a few weeks ago and while his fever didnt' reach but 101 and only 2 days, his stomach hurt and had mouth sores for a week and he hardly ate. Anyway, he does this every fall...Sept/Oct and then picks them back up in Feb bad. They go back to 104/105 for 5 days every 2 weeks. We are about to go for our appointment at the NIH in a couple of weeks and I am excited to be seen by these experts since Zachary doesn't follow the 'normal' pattern of kids. Good luck finding answers! Deanna mom to Zachary 5yrs Huntsville, AL > > My son is now 21 months and has fevers every month since 2 months old. > He is in the process of being diagnosed with , the doctor wants to > monitor him a few more months. His normal cycle seems to be about every > 14-21 days... but he's not had a fever for almost 6 weeks. Although I'm > VERY VERY happy that he's not been sick it has kind come at a bad time > because the specialist is waiting to see him again when he is fevering. > I'm wondering has anyone else experienced a break in fevers? I'm happy > that he's doing well but worried that the next time is coming and that > it might be worse. > > Thanks to anyone who responds! > > Crissy > Caleb ..21 months, possible > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2006 Report Share Posted October 8, 2006 Crissy, My son who is 11 DOES NOT get fevers like clock work, but he does fever between 2 and 9 weeks apart. Last May, he got back to back fevers (missed the whole month of school, was VERY, VERY sick) then sick again the middle of June (gave him pred. with this episode and was feeling good within hours) Then he didn't get sick again until the middle of Aug. So...with , we cannot predict when his next fever will be, but his ID doctor told us that as long as he stays within the 2-10 week period (the time in between his fevers) then he is still considered to have . Hope that helped, Cheri, Galt, CA --- " Ask... " <moviegirl79@...> wrote: > My son is now 21 months and has fevers every month > since 2 months old. > He is in the process of being diagnosed with , > the doctor wants to > monitor him a few more months. His normal cycle > seems to be about every > 14-21 days... but he's not had a fever for almost 6 > weeks. Although I'm > VERY VERY happy that he's not been sick it has kind > come at a bad time > because the specialist is waiting to see him again > when he is fevering. > I'm wondering has anyone else experienced a break in > fevers? I'm happy > that he's doing well but worried that the next time > is coming and that > it might be worse. > > Thanks to anyone who responds! > > Crissy > Caleb ..21 months, possible > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2006 Report Share Posted October 13, 2006 We're experiencing some breaks and changes in 's fever cycle too. It used to be 21 days almost like clockwork, give or take a day or two. Just when we thought we had that figured out, it stopped being so predictable. His fever started yesterday, five weeks after the last one, so we've been waking up every day for two weeks wondering if this was going to be the day. He did run a fever for a couple of hours on day 24, but then it went away. I was worried that it would be especially bad after such a long break, but so far it is very mild, and we have been able to keep up with almost all normal activity (and he's even sleeping and eating!). His last fever (five weeks ago) was the worst one in a long time, after two relatively mild ones. Is anyone else seeing any kind of rotation of mild and severe episodes? I don't quite have a pattern figured out, but it definitely seems like mild ones tend to come after really bad ones, and maybe the other way around too, but not to a point that it is predictable. Of course I'd rather have a five week cycle than a three week cycle, but it is so hard when we don't know what to expect. Every time he goes longer than 21 days or has a really mild episode, we think maybe he is outgrowing this. But then he gets slammed with a bad one again... - , 3, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2006 Report Share Posted October 14, 2006 <<<< Is anyone else seeing any kind of rotation of mild and severe episodes? >>>>>> I have. Aidan had two short cycles - relatively mild - three days of fever with a high of about 103 only 2 weeks apart - which was very close for him. Then we had a glorious break of 48 days - which was LOVELY - and then WHAM - he got hit again with a bad bad cycle of 6 days with severe lymph node involvement. Fran - Has NIH ever commented on short vs. long vs. mild vs. severe cycels? Hannah Aidan - 3 - fevering 17 months Sid - 5 - who scored three goals today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2006 Report Share Posted October 15, 2006 Hannah, NIH does not comment much on .... in general, they simply say (Kastner when I say they!) the recommendation if it is truely is using antipyretics... and they say some cases are less severe while others are more intense... This is also the case with the genetic disorders. They vary in intensity.... even with the same marker! So no... no comments. Also... Kastner does say often that he feels that new markers will continue to be isolated and many children with a diagnosis of may end up with a change in diagnosis. This has already been proven in the late 90's and early 2000's with the identification of hundreds of markers for TRAPS, and NOMID and Muckle Wells as well for the markers isolated in the Netherlands for HIDs. Quite interesting. Fran Fran Bulone RN Mom to ph 7yr CIAS1 mutation 11/05 Waxhaw NC / Quote Link to comment Share on other sites More sharing options...
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