Guest guest Posted October 31, 2006 Report Share Posted October 31, 2006 It's interesting to hear others say their child has had a break in the cycle of fevers. My son stopped having fevers from May to Aug but then they returned twice as often. This stoppage of fevers has caused his doctor to question the diagnosis of . We also had a recent episode with fevers during which he also seemed to get a cold. His fevers seemed high for his symptoms so I don't know whether it was a episode or a virus. It just happened to start on the exact day he was supposed to get a fever. 7 Greenfield, IN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2006 Report Share Posted October 31, 2006 My daughter's fevers also stopped from October through February last year. It really threw off her pediatrician. For us, when they returned, they weren't as severe. Now, we haven't had a fever since September. I'm hoping they are over but, at a minimum, I hope she's on her winter fever break. Mirth > > It's interesting to hear others say their child has had a break in the > cycle of fevers. My son stopped having fevers from May to Aug but then > they returned twice as often. This stoppage of fevers has caused his > doctor to question the diagnosis of . We also had a recent > episode with fevers during which he also seemed to get a cold. His > fevers seemed high for his symptoms so I don't know whether it was a > episode or a virus. It just happened to start on the exact day > he was supposed to get a fever. > > > 7 > Greenfield, IN > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2006 Report Share Posted November 1, 2006 My daughter fevered regularly for at least 16 months, and then her fevers abruptly stopped last Spring. Her last fever was March 14. Just prior to her fevers she would get very cranky and sleepy and her nose would run (clear) like crazy, then those symptoms would resolve once the fever started. We think she is still experiencing those symptoms about every 40 days (her fevers used come about every 40 days), but we're not sure...it could just be cold symptoms. They never last long. We no longer look at the calendar every few days counting down until the next fever, however, we still keep a bottle of prednisone on hand just in case they return with a vengence. We also bring the prednisone with us anytime we are heading out of town for more than 24 hours. We just never know! > > My daughter's fevers also stopped from October through February last > year. It really threw off her pediatrician. For us, when they > returned, they weren't as severe. Now, we haven't had a fever since > September. I'm hoping they are over but, at a minimum, I hope she's > on her winter fever break. > > Mirth > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2006 Report Share Posted November 1, 2006 karen, my son PJ, who has been diagnosed with clinical FMF by NIH, always breaks between May and early September. He is turning 14 years old today and is currently having full blast episodes every 2 weeks! Pat --------------------------------- Want to start your own business? Learn how on Small Business. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2006 Report Share Posted November 1, 2006 Hey Pat, I did not realize PJ is having events every 2 weeks?? What is going on?? Increase in colchicine needed?? What are the docs saying?? Gosh that has to be hard on him and you. Love 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...
Guest guest Posted November 1, 2006 Report Share Posted November 1, 2006 Hi Fran, Yes, every 2 weeks and they seem to be getting stronger. He hadn't had anything but a low grade temp, if that, with episodes for a long, long time but he just ended his last episode yesterday with temps at 103 for a couple of days. That's high to me just because it's been at least 3 years since he's gone that high. Same thing weeks ago and 2 weeks before that. I don't know what's going on. He's maxxed out on Colchicine. Dr. Kastner has told us that he will not raise the dose again. We are due to go back in December but I'm considering trying to get in earlier. I also know that they are definitely going to add either Enbrel or methotrexate at that time. That prospect just doesn't excite me but at the same time, we can't continue like this! He is so run down and losing weight again. Not enough recovery time between episodes. What is your thinking on the matter? Love, Pat --------------------------------- Want to start your own business? Learn how on Small Business. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2006 Report Share Posted November 1, 2006 Hey Pat, Gosh, I would definitely try to get in earlier... At least if you get another medication on board maybe the fevers will disappear or at the least spread out so his body can recover some. At his age 103 is high... the older the kids get and closer to adulthood, temps definitely seem to effect them at a lower number. Contact Beverly and see if she can get him in earlier. I know they always tell us if there is a change and the child worsens to contact them!! I will keep him in my prayers. Love 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...
Guest guest Posted November 3, 2006 Report Share Posted November 3, 2006 Fran, I had planned on waiting another 2 weeks to a month to see if the current 2 week cycles continued but instead I went ahead and called Beverly today. I told her that he was due his next visit in December and wanted to go ahead and schedule it and she just burst out laughing and said " honey, we are booked solid til January! " . We went ahead and scheduled a January appointment and then I told her that the reason I was calling now was because I thought we might need to move it up earlier than December, she chuckled yet again, and then I explained what was going on with the 2 week cycles. I told her that it was ok, if they were booked that we could wait because this was only the 3rd time on that cycle and I was willing to wait to see if they continued and she interrupted me to ask, " that's 3 episodes in 6 weeks? " . I told her that yes, 3 episodes in 6 weeks, and then she wanted a little more info on the episodes, ie, highest temp, duration, recovery time, etc. She sure changed her tune! She said to forget January, she was going to talk to Dr. Kastner and see if he could see him next week! I told her that if they were booked that tight that we could wait but she said " no, we can always squeeze in a crisis case! " . She will call me back next week to let me know when to bring him in. The big advantage for us is that being so close, she can call me one day and we can be there the next which is what she made it sound like what would happen. I'll keep you posted! Love and God Bless, Pat, mom to PJ, just turned 14 years!, clinical FMF --------------------------------- We have the perfect Group for you. Check out the handy changes to . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2006 Report Share Posted November 3, 2006 Pat, I am so glad you called. Hopefully they get you in in a week or two... he definitely needs to be seen.... especially since he is maxed out with the Colchicine.... and thinking other meds. Let me know. God Bless 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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