Guest guest Posted August 19, 2006 Report Share Posted August 19, 2006 Yes, my daughter , (19 months) does not handle the fevers well. All she wants to do is have me hold her while she trys to sleep. She doesn't want to eat or drink. She'll be sleeping & her body jerks every so often. It really scares me. Karri mom to sville, TN sheryl7005 <sheryl7005@...> wrote: So much that i read about talk about kids handling the fevers well, people talking about sending there kids to school during an episode, is out during the eposodes sleepy, won't eat, ect for 3-5 days at a time. For the first two days she is scary sick. Is any one else like this???? --------------------------------- Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2006 Report Share Posted August 19, 2006 Hi Sheryl, Our son was like that for a long time before we began treatment at the NIH. Flares were every 7-10 days and lasted 3-5 days. He was lathargic, very high fevers(105-107), he wouldn't walk because of the joint pain in his legs and hips and swelling in his toes/feet, and due to the belly pain, he wouldn't eat. A few flares he was hospitalized with dehydration and high temps and extremely high sed rates.....so, yes, the disease S----!!! We are all doing the best we can and we are praying hard for new info and wonderful research! Best of luck. Fondly, Lori--- sheryl7005 <sheryl7005@...> wrote: > So much that i read about talk about kids > handling the fevers > well, people talking about sending there kids to > school during an > episode, is out during the eposodes sleepy, > won't eat, ect for > 3-5 days at a time. For the first two days she is > scary sick. Is any > one else like this???? > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2006 Report Share Posted August 19, 2006 >>> is out during the eposodes sleepy, won't eat, ect for 3-5 days at a time. For the first two days she is scary sick. Is any one else like this????>>> How old is ? And how high are the temps you are decribing and how do you treat? Do you alternate every 3 hours etc? The behavior you describe.... is it for all the days of her fevers?? ph still has to stay home day one of his fever and sometimes day 2 because he is really unable to concentrate and he feels all over achy. But he usually can go day 3-4-5. His fevers now last longer.... up to 12 days. But he goes those days. (Remember ph has CIAS1 gene.... mis-diagnosed with until he was 6!) ph too was " scary " sick as an infant and toddler but the symptoms became less " scary " sick when he was around 5 and 6. Now at 7 he handles them better... But the height of the temp was AMAZING. As an infant and toddler his temps ALWAYS ran between 103 and 107.5. When I was ABLE to get them to 103-104 and keep them there by medicating around the clock, he really acted almost normal. I always thought his temp threshold in his pituitary must be set at different than normal people. Kinda like a different thermostat! God Bless Fran Fran Bulone RN Mom to ph 7yr Waxhaw NC / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2006 Report Share Posted August 19, 2006 Good question - I've wondered that myself. Aidan is sick sick when his fever is up - and when it's broken with Motrin his eyes will remian puffy and he won't have that much energy and he won't eat that much but he will run around and play. . . and when the fever starts creeping back - usally about 4 hours into the Motrin he starts acting sick again - clingy and crying etc. Does this rule out ? Not sure either. Hannah Aidan Sid > > So much that i read about talk about kids handling the fevers > well, people talking about sending there kids to school during an > episode, is out during the eposodes sleepy, won't eat, ect for > 3-5 days at a time. For the first two days she is scary sick. Is any > one else like this???? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2006 Report Share Posted August 19, 2006 HI Sheryl, My son has never been able to function with an episode even on prednisone. He is down flat for two days and then up a little for the next three days. I have been amazed by the kids who can get up too???? misses a lot of school days. We have another 2 weeks for the genetic testing to come back. Then we will know what we are really dealing with here. Hang in there, Gretchen & 13 sheryl7005 <sheryl7005@...> wrote: So much that i read about talk about kids handling the fevers well, people talking about sending there kids to school during an episode, is out during the eposodes sleepy, won't eat, ect for 3-5 days at a time. For the first two days she is scary sick. Is any one else like this???? --------------------------------- Get your email and more, right on the new .com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2006 Report Share Posted August 19, 2006 Hi Sheryl, My son is the same way. He will wake up at daycare with a fever, they will call for me to get him and by the time I get there, he can hardly move. He cries, says his body hurts (he's only 3, so can't say exactly) and he tells me his tummy hurts. When I get home and give him the motrin, within about an hour his fever drops to about 102 and he will usually just lay around. After the prednisone, he will still lay around for another day or so. It takes a good three days for him to get up and function. Even by that point he still slows down about every three hours when the tylenol or motrin wears off. Good Luck a mother to (3) Gretchen Danson <gretchendanson@...> wrote: HI Sheryl, My son has never been able to function with an episode even on prednisone. He is down flat for two days and then up a little for the next three days. I have been amazed by the kids who can get up too???? misses a lot of school days. We have another 2 weeks for the genetic testing to come back. Then we will know what we are really dealing with here. Hang in there, Gretchen & 13 sheryl7005 <sheryl7005@...> wrote: So much that i read about talk about kids handling the fevers well, people talking about sending there kids to school during an episode, is out during the eposodes sleepy, won't eat, ect for 3-5 days at a time. For the first two days she is scary sick. Is any one else like this???? --------------------------------- Get your email and more, right on the new .com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2006 Report Share Posted August 19, 2006 Before we started giving prednisone we didn't leave the house for the first three days of an episode. My duaghter was VERY sick for the first 2-3 days and even worse at night. We found ourselves in the E.R. on more than one occasion because she was so sick. I could not send my daughter to school without prednisone. --- trish santos <summerday148@...> wrote: > My daughter does well on Tylenol/Motrin during the > day where she can function at school, (Especially > day 1 - 3)b ut we know come 5:00 not to plan a > thing, and for some reason day 4 is the worst. I'll > just be holding her at these times. > Trish > > > sheryl7005 <sheryl7005@...> wrote: > So much that i read about talk about > kids handling the fevers > well, people talking about sending there kids to > school during an > episode, is out during the eposodes sleepy, > won't eat, ect for > 3-5 days at a time. For the first two days she is > scary sick. Is any > one else like this???? > > > > > > > --------------------------------- > Do you ? > Get on board. You're invited to try the new > Mail Beta. > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2006 Report Share Posted August 21, 2006 Our son was like that at first too until we started using prednisolone. He always does miss the first day or two of school during an episode, but we are fortunate that the prednisolone brings his fevers down within a few hours. Before we started medicating, he was just like your daughter, very sick and we stayed home during those time. The Prednisolone has been a blessing for us. I know for alot of people it hasn't worked, so we feel very fortunate. Typically with Brady, his fever comes on during school and then they call me and he is home the rest of that day and then the day after and able to return to school the next day. Patti, mother of Brady 7 1/2 sheryl7005 <sheryl7005@...> wrote: So much that i read about talk about kids handling the fevers well, people talking about sending there kids to school during an episode, is out during the eposodes sleepy, won't eat, ect for 3-5 days at a time. For the first two days she is scary sick. Is any one else like this???? --------------------------------- Stay in the know. Pulse on the new .com. Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2006 Report Share Posted August 22, 2006 My daughter is 29 months and she does not handle them well either. She is really bad for 4-5 days, no eating, sleeps a lot and complains of terrible headaches and tummy aches and that's on top of 106+ fevers. I think it can affect kids differently. Our ID specialist said that some kids can function well enough to attend school and daycare etc. Not our daughter, she is out for the count. We don't notice improvement until day 5 and she's not herself again until at least day 8. Karyn Mom to () Quote Link to comment Share on other sites More sharing options...
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