Guest guest Posted August 23, 2006 Report Share Posted August 23, 2006 check out t he file.s... u need to go to NIH " New " to Hi, First let me say it comes as a huge relief to realize I'm not the only mother out there struggling with a child who is sick every 4-6 weeks. My son, has been having fever episodes since October 2004. I began monitoring his fevers when the school contacted me about his frequent absences. We have gone through numerous blood tests, I've listed some of 's symptoms. has a high sed rate during a fever episode and and tested positive on the ANA test. Originally the doctors thought JRA because he says he's knee's/legs hurt but the doctor has since ruled this out. His fevers run very high 105+ and he becomes very tired and lethargic. I have also noticed that prior to an " episode " runs a low grade fever 99.9-100 Josh has become very aware of his fevers and will say he " smells his sickness " I can only assume that this is the fever smell he is noticing. Currently is on 15 ml of prednisone (1 pill every 12 hrs or until the fever goes away) and 250 ml of Ibuprophen and 250 of acetaminophen during an episode. He is 5 years old and weighs 36 lbs. Has anyone else experienced these symptoms? and this type of drug therapy? We are trying to make arrangements for the genetic testing but haven't had much success. I'm sick with worry and am concerned about the frequency and dose of medication even though the doctors assure us this is okay. Thank you for your help. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2006 Report Share Posted August 23, 2006 Hi and welcome! I don't have any advice for you really - but you have found a GREAT source of info. in these pages - I just started a few weeks ago - my son (3) has been fevering for 15 months and we got back to ID next week . . . So good luck and be sure and look through all the old posts that you can and look at the links section. Tons more information thanks to FRAN! Prayers for us all, Hannah > > Hi, First let me say it comes as a huge relief to realize I'm not the only mother out there struggling with a child who is sick every 4-6 weeks. My son, has been having fever episodes since October 2004. I began monitoring his fevers when the school contacted me about his frequent absences. > > We have gone through numerous blood tests, I've listed some of 's symptoms. has a high sed rate during a fever episode and and tested positive on the ANA test. Originally the doctors thought JRA because he says he's knee's/legs hurt but the doctor has since ruled this out. His fevers run very high 105+ and he becomes very tired and lethargic. I have also noticed that prior to an " episode " runs a low grade fever 99.9-100 Josh has become very aware of his fevers and will say he " smells his sickness " I can only assume that this is the fever smell he is noticing. Currently is on 15 ml of prednisone (1 pill every 12 hrs or until the fever goes away) and 250 ml of Ibuprophen and 250 of acetaminophen during an episode. He is 5 years old and weighs 36 lbs. Has anyone else experienced these symptoms? and this type of drug therapy? We are trying to make arrangements for the genetic testing but haven't had much success. I'm sick with worry and am concerned about the frequency and dose of medication even though the doctors assure us this is okay. > > Thank you for your help. > Bonnie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2006 Report Share Posted August 24, 2006 Sami is 5 and about the same weight and takes the 15mg of predisone every 24 hours (so far it has only taken 1 dose) She is on 150 miligrams of advil/motrin. Trish Bonnie Cameron <bcameron@...> wrote: Hi, First let me say it comes as a huge relief to realize I'm not the only mother out there struggling with a child who is sick every 4-6 weeks. My son, has been having fever episodes since October 2004. I began monitoring his fevers when the school contacted me about his frequent absences. We have gone through numerous blood tests, I've listed some of 's symptoms. has a high sed rate during a fever episode and and tested positive on the ANA test. Originally the doctors thought JRA because he says he's knee's/legs hurt but the doctor has since ruled this out. His fevers run very high 105+ and he becomes very tired and lethargic. I have also noticed that prior to an " episode " runs a low grade fever 99.9-100 Josh has become very aware of his fevers and will say he " smells his sickness " I can only assume that this is the fever smell he is noticing. Currently is on 15 ml of prednisone (1 pill every 12 hrs or until the fever goes away) and 250 ml of Ibuprophen and 250 of acetaminophen during an episode. He is 5 years old and weighs 36 lbs. Has anyone else experienced these symptoms? and this type of drug therapy? We are trying to make arrangements for the genetic testing but haven't had much success. I'm sick with worry and am concerned about the frequency and dose of medication even though the doctors assure us this is okay. Thank you for your help. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2006 Report Share Posted August 26, 2006 --Hi Bonnie, My name is Cheri and I am new to the group too. My son has been fevering since Feb. 2006. is 11 years old, much older than any of the children I've read about, so far. We had a pretty rough time with him being sick, this past school year. We made many trips to the doctors. After many visits and tons of blood work the only thing that showed up was his sed rate was 3 times higher than normal. His ID doctor just informed us about a month ago that he thinks has . We thought he had FMF back in May, because my mom was diagnosised with FMF, six years ago, but his genetic testing came back neg. He has been taking Prednisone since May and it has made a huge difference. I am very concerned about side effects though. The thing we have noticed the most so far is weight gain. I would really like to hear from others about two things...does anyone elses children complain of dizziness before and during an episode...and does anyone have a child older than 7 with ? Hope to hear from you and others soon. Cheri- In , " Bonnie Cameron " <bcameron@...> wrote: > > Hi, First let me say it comes as a huge relief to realize I'm not the only mother out there struggling with a child who is sick every 4-6 weeks. My son, has been having fever episodes since October 2004. I began monitoring his fevers when the school contacted me about his frequent absences. > > We have gone through numerous blood tests, I've listed some of 's symptoms. has a high sed rate during a fever episode and and tested positive on the ANA test. Originally the doctors thought JRA because he says he's knee's/legs hurt but the doctor has since ruled this out. His fevers run very high 105+ and he becomes very tired and lethargic. I have also noticed that prior to an " episode " runs a low grade fever 99.9-100 Josh has become very aware of his fevers and will say he " smells his sickness " I can only assume that this is the fever smell he is noticing. Currently is on 15 ml of prednisone (1 pill every 12 hrs or until the fever goes away) and 250 ml of Ibuprophen and 250 of acetaminophen during an episode. He is 5 years old and weighs 36 lbs. Has anyone else experienced these symptoms? and this type of drug therapy? We are trying to make arrangements for the genetic testing but haven't had much success. I'm sick with worry and am concerned about the frequency and dose of medication even though the doctors assure us this is okay. > > Thank you for your help. > Bonnie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2007 Report Share Posted May 1, 2007 Kim, thank you for the information. We are waiting for my daughter's next episode which should be near the last week of May. Once the fever starts, we are suppose to start the Prednisone. Our daughter's fevers started 3 1/2 years ago. She only gets two symptoms, high fever and throat ulcers (compared to other stories, that isn't bad). We have been told it is viral for the entire 3 1/2 years; until now. My husband and I are very anxious to get her past this. I am grateful to be near the Cleveland Clinic for help. Thanks again for the information. Take care. Kim Ingalls <ingalls_kim@...> wrote: ; Prednisone will stop this cycle of fever. It does not stop the cyles of fever from coming. Sometimes the prednisone can make the cylces come closer together, instead of 4 weeks sometimes they will become three or even two weeks apart. Our Rheumatoliogist put our son on Cimetidine 300 mg he is 6 years old 38 pounds and has been fevering for 13 months. This medicine sometime makes the fevers go away after three months of taking it, our son has been on it for 4 1/2 months his fevers have not stopped but they are now 5 weeks apart and they only last three days and they stay around 101-102 temps. We allow him to decide if he wants tylenol and we let him decide if he wants to go to soccer or t-ball. We made a decision a few months ago that would not stop him from having a normal childhood. He has two older sisters and we use to stop and cancel everything everytime he had a fever but the doctor said he is not contagious. Look on the website, you will find alot of information. I wish you the best. Kim Ingalls Fredericksburg, Va Tyler 6 Keri 10 le 13 New to Hello to anyone out there. I am a wife and mother of two. Our 6 yr old daughter possibly has and I wanted to know if anyone out there can tell me if prednesone will remove the symptoms completely. Will this be a cure for her? ------------ --------- --------- --- Ahhh...imagining that irresistible " new car " smell? Check outnew cars at Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2007 Report Share Posted May 1, 2007 - Thanks for the information. I think I will call my doctor and discuss Cimentime. Caitlyn has been getting these fevers and throat ulcers for 3 1/2 years. We have been blown off by all doctors until now. This is an overwhelming feeling and I really put all my hope into the Prednisone. I am concerned to hear it has brought on more fevers (youre not the only one to say that). Thank you again for the information. kpreveaux@... wrote: From what I have gathered, the prednesone stops the fever with my 2 year old son within an hour and he returns to eating the same day. However, this has NOT been the miracle drug I would like for it to be. In the past 6 weeks that he has been on it, he has started to fever more frequently. The lastest episode was only 8 days before the next. Unsually they were 3 to 6 weeks apart. I spoke to his doctor this morning and we are hoping that the Cimentime we just started will help keep it under control and HOPEFULLY it will pan back out. Good luck!!!! By the way, he only takes one dose of orapred when he starts to fever. , mother to Conyers (2.3) > > From: Baldini <stephanie_baldini@...> > Date: 2007/04/30 Mon AM 11:39:03 EDT > > Subject: New to > > Hello to anyone out there. I am a wife and mother of two. Our 6 yr old daughter possibly has and I wanted to know if anyone out there can tell me if prednesone will remove the symptoms completely. Will this be a cure for her? > > --------------------------------- > Ahhh...imagining that irresistible " new car " smell? > Check outnew cars at Autos. > > Quote Link to comment Share on other sites More sharing options...
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