Guest guest Posted October 11, 2006 Report Share Posted October 11, 2006 Hi all, I am somwhat new to the group. My daughter, Sara, is 19 months old and has yet to be diagnosed with or any other periodic fever disorder. We are in the process of seeing a rhuematologist for a diagnosis. Here is the thing...she got a fever today, 102.2 (that came down with motrin) which is not bad for her at all. When she fevers, she usually runs about 105-106. Also, she isn't necessarily 'due' for a fever for another 5 days or so. How do I know if this is a real episode or really just a virus (Oohhh I cringe at those words, I have heard them for too long!) So the next time Sara had a fever, she was supposed to have blood work done (to check sick blood work from well blood work) and we were also supposed to see the rheumatologist again. How do I know if this is it? I know I am answering my own question but I guess I just have to use my own judgement. I'm just so afraid that if this is just a virus and the rheumatologist doesn't see anything she will drop the issue and we will never find out why she has fevers so often. I'm sure that is a pretty irrational feeling but I finally feel like someone os listening to her symptoms and really trying to figure out what is wrong, I'm so afraid to lose that. Any advise would be greatly appreciated. Thanks Maureen Mom to Sara 19 months (??) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2006 Report Share Posted October 11, 2006 When your child is fevering and especially when new to this and trying to diagnose... it is important to arrange with your pediatrician a call system... and arrange for your child to be seen to make sure you are NOT missing something.... There has been cases where a child appears to be fevering with a Periodic Fever event and it turns out to be any of these... pneumonia (walking especially), endocarditis.... (infection heart) and menigitis... SO, if you are wondering call the doc and get the child seen. Also... if your pediatrician is in a large group with a " call " system on place for emergencies... IF you have a good relationship with the primary pediatrician... see if he/she will see your child each fever so you do not need to deal with other docs who see high fevers and panic... It does happen. When ph was an infant and toddler our pediatrician ALWAYS saw him... he instructed the front office to let him know immediately that ph was sick and they ALWAYS squeezed him in that day. If he was out (actually off) I would either wait or he would arrange with another doc (ALWAYS the same doc) to see ph if we called. There were about 9 doctors in the group so this made life easier. I also felt comfortable taking him in as a baby... it made me feel a little more secure. The other thing... he gave me a " standing " script for CBC with differential... and SED rate and Quantatative CRP... this helped when blood tests were needed... and usually as a toddler and infant they were... I sometimes made the call and then took ph straight to the lab for the blood work and then to the doctors office.... He always wrote STAT on the script so by the time we got to his office he had the results. These are little things that will help you get through the rougher times. Hope this helps. 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 October 12, 2006 Report Share Posted October 12, 2006 Hi Fran, Thanks for the reply and the good advice. I have to try to get in touch with Sara's dr. and see if I can work something out with him. It's hard because she is a new patient and we don't know them very well but this dr. is very patient and seems like he would be willing to work with us. So Sara did well last night. She woke up twice (once at 10pm and then at 5am) but didn't seem to have a fever. This am she had a low fever but was really cranky. So I gave her the motrin at 7am. She was due again at 1 but felt fine to the touch when I put her down for her nap. I checked her throat and she is starting to get small blisters in the back. I also noticed this time and last that she gets a ton of saliva and her lips get very pink/reddish when she fevers. Is this a symptom of anything? I still have the appt. with the rhuematilogist tomorrow at 1 but I still don't know what to do. I feel like the episode is just brewing in her and it will come full blast over the weekend when the rheu. is not there and we are away not near our regular dr. or hosp. What do you think would be best to do...go tomorrow with the symptoms of slight fever and throat blisters or see what happens over the weekend and if it gets worse go Monday? I feel like I should wait since the #1 symptom should be high fever. Thanks Maureen, Mom to Sara 19 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2006 Report Share Posted October 12, 2006 Hi Maureen. I personally would wait until there is a full fever... In the mean time maybe you can place a call to the doc and find out if they see patients on Saturdays for emergencies. Some pediatric offices do see patients on weekends!! If not then find out the usual protocol... who covers etc... You know her usual fever event... and if she usually runs high ... it could be something else. Does she normally start out slow?? Most kids with and many of the other fever disorders will elevate pretty rapidly.... Unusual to start out low grade... and take a couple days to elevate etc... (This comment is for the younger kids... seems with the older the children get the fevers are less severe in onset...) Hope you get it all together. Hopefully the office your doc is in is open to helping children in a unique way when the child has a unique disorder!! I bet they just might!! 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...
Guest guest Posted October 12, 2006 Report Share Posted October 12, 2006 Hi and welcome! I believe that is it is possible to have periods of " remission " where they stop cycling as frequently. My son fevers anywhere from 14 days apart to this last time - and boy was it NICE - 48 days a part. I suggest reading and researching and keep asking questions because there are people on this board that are A LOT more knowledgeable about it than I am. Prayers for all! Hannah Aidan - 3 - fevering 17 months Sid - 5 Fort Worth, TX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2006 Report Share Posted October 19, 2006 Hi Bobbie I just wanted to write to let you know that my daughter sees Dr. Groh who is in practice with your rheumatologist at Hershey. We live in Lancaster County PA. I have been pleased with her treatment. My daughter was 2 in August. she is currently taking Singulair and has done well on it. You know I posted yesterday and I was saying how well she had been doing - no fever since end of July, then this am she wakes up with a fever. I am thinking the same, that it may not be realted because I am feeling a little ill myself but you just really never know I don't think. I will wait the 3 days and then call her pediatrician if it persists. I also wanted to mention that i know I have read of many children who experience neck pain with the episodes (my daughter included) so maybe that was what was up with the back of his head or maybe just a headache. He sounds liek he is pretty verbal and able to tell you where it hurts well. That is good. My daughter has never been good about it. She gets like your son does - very clingy and wanting attention and held but never could tell me where it hurt. This am she pointed to both her knee and elbow and said " ouch " . At least it is something. Anyway.....welcome to the group and I wish you feverfree days (and nights!) ! Lori Rodgers mom to four daughters including (2) ?PFS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2006 Report Share Posted October 19, 2006 Hi Bobbie, I am also from PA. I live about 25 miles north of burg; however, we take our son Mason to CHOP in Philadelphia and now to the NIH in Bethesda. Make sure you get all the genetic testing done and that you feel comfortable with how the doctors are handling your son's care as we were first told our son had but recently via the NIH, they believe he has HIDS, which is genetic ... though at this point they have not found the mutation but the tests are still out ... My son also gets terrible pain in the back of his head. But I always attribute it to his migraine-like symptoms with his fever episode ... as he also hates having the lights on. But if your son continues to do this you should have him checked to make sure its not meningitis or something of that nature. There were many times I took my son in to be seen more for the pain, than the fever itself ... though he has also had some very high fevers too. I know that Tylenol and Motrin barely touch Mason's symptoms at times. Though his Doctors tell me that his fever would probably go even higher without the meds. so I continue with them anyways. Its good to hear the Cimetidine seems to be working. That does help some kids with . We had tried it and currently our son is still taking it ... but it doesn't help him at all. We now have to start the weaning process. If you ever need an ear or want to email me privately, please feel free to do so at heidikopp@.... My son Mason has had fevers since 11 months old and he is now 6 years old. He also has lots of GI issues, several intestinal surgeries, asthma, GERD symptoms, and is very small for his age. And yet he is a very happy little man. Heidi Mommy of Mason, and Amber Pennsylvania > > Hello.... > > My name is Bobbie, mother of who is 20 months old. My son was > diagnosed with in August. It seems like was diagnosed > quite early compared to a lot of the posts. has been fevering > since the first week of May 2006. His fevers would come every two > weeks like clockwork and would last four days. The day before the > fever starts, just wants to be held all the time and gets > very, very winey. You cannot put him down at all. He just cries " up, > up " . You cannot leave his side when is is fevering. When I would get > up go get something in the other room, he would start whining and > running after me, grabbing my leg. > > has had many blood tests and ruled out many of the diseases > and other conditions. He starts genetic testing next week. > > also has what they call geographic tongue. During his fever > episodes, the tongue gets really, really spotted and gets many 1/4 " > white circles all over it. It doesn't seem to bother him though. > When the fever stops, the tongues goes back to the normal pink color. > > is being seen by Dr. April Bingham, a Pediatric > Rheumatologist from Hershey Medical Center. We see her at the Lehigh > Valley / Muhlenburg Hospital. Does anyone else see her or is anyone > else from the Lehigh Valley/town, PA area? > > has been taking Cimetidine since the end of August and it > stopped the fevers right away. He skipped three fever episodes and > went 44 days without a fever, until this past weekend. I am thinking > this time, may have had a viral cold or something because of > all the different symptoms this time. He started on Friday with > extreme stomach pains, he kept holding his belly and crying " boo > boo " . By Saturday afternoon, the he no longer complained about those > pains, but the fever started then. Sun. a.m. he threw up right after > I gave him the Motrin. Monday night was a real scare for us. > woke up and kept crying and screaming " boo boo " and holding his back > of his head with his two hands. Did anyone elses child complain about > pain in the BACK of the head? He did this for about 2 hours straight > and would not stop crying. Normally, all you would have to do is hold > him and he would stop crying. He finally fell back asleep and woke up > again after about an hour and a half and did the same thing again. I > felt so helpless and he was given Motrin before bed, so I thought why > wouldn't this have taken away any pains he would have had? By morning > he was fine and no more fever, but started with a runny nose. I am > hoping this was just a viral thing that he had instead of the usual > reoccuring fever. > > I have been reading all the posts and have learned so much. I look > forward to reading every morning to see if there is something new to > look for. > > God Bless all of our children and make them well. > > Bobbie > Northampton, PA > Mother to (age 20 months ) > & (age 5-1/2) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2006 Report Share Posted October 19, 2006 In a message dated 10/19/2006 4:31:37 P.M. Pacific Standard Time, kthursby@... writes: My Name is Kim Thurmond, I am a the mother of Sammy(7yrs) and Lilly (4yrs). Sammy is my son who has . Oh, no. Not ANOTHER Sammy! :-) As you will see when you're on this list, there seem to be a very high number of Sammys (and moms named Lori!). I'm sorry you have a reason to be here, but glad you found the group. It helps immensely to know that you're not alone. --Lori, mom to Sammy (), 7, JRA/uveitis/? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2006 Report Share Posted October 19, 2006 I can relate with everything you feel. My daughter is 19 mths and has been fevering every month for the past year. We finally found a Dr is knows alot about Periodic fever syndromes, thankfully from a referral from someone from this site. I don't know what I would have done because my Ped. didn't know anything and the one Dr he did send me to at who is familiar with Pfapas put her a strong antibiotic for a month and when that didn't work he suggested taking her tonsils out. I did try to prednisone, however, I have since stopped because he was increasing the frequency of her episodes and I also am not comfortable with giving drugs to my children. As for the cimetidine. I have done alot or research and the only thing I can say is if it does work, it is worth trying. There do not seem to be any benign affects from this drug. I have only just started giving it to my daughter this months so she hasn't been on it long enough to know if it is going to work. My husband and I had the script for 2 months before we decided to try it. But she gets her fevers so often, almost every 24 days for about 4 days. I am willing to try it. This is a very frustrating disorder and the only advice anyone can give is you have to do what you feel is best for you and your child. If my child was older and not fevering as often I might be inclined not to give the cimetidine and just deal with the episodes but to have a child sick every 20 days is awful. Wish you well and keep up with this site. I have learned so much from reading the links and archive files I don't know what I would have done if I didn't find this site. Take Care Tammielee Mom to Alyssa 18mths (Pfapas ?) 3 1/2 Introduction Hi My Name is Kim Thurmond, I am a the mother of Sammy(7yrs) and Lilly (4yrs). Sammy is my son who has . He hasn't gone through all the testing that alot of other children have gone through, (I am not sure that I want to go through all of that) but he seems to be the classic case of . When he was a baby (after 1yr) he would get sick with high fevers 105-106 and we would take him to the doctors and they could never find anythin g wrong with him other than the fevers. So he would have a virus they would say. So that went on for a long time. Back then it wasn't every 5 weeks, but at least every other month or so. I thought for sure that he got sick more often then the other babies that I knew. He would always be sick for exactly 3 days. So then I thought that maybe he had such a strong immune that he just burned off all his viruses and that was why he had no other symptoms. I stoped taking him to the doctors because it started to be a waste of money and time. The older he got the more questions and frustrations I had with the whole thing. So last October I decided that I would write down on a calender when he would get sick. He got sick every month for three days. I started taking him to different doctors and some would listen to my story and concern that he got sick more often then the normal children that we knew. Most just wanted to take out his tonsils. I didn't think that made much sense, since he never complained of sore throat, never had strep. etc. So my husband and I decided to do our own research and found out about . Everything came together after that. The symptoms that he had, and needed for a diagnoses were present. Sammy always had canker sores (which I never put two and two together or mentioned to a doctor) , always had the high fevers which we controled with Motrin and Tylenol, always had the bad head aches, leg aches, and completly life less for those days, and had the swollen gland, with no other symptoms. Once the three days are up everything goes away. When he is sick his canker sores get very big in his mouth, does anybody know of ways to help heal them faster? Since last October, only twice has he been sick with something other than his episodes. Once the begining of Pnemonia, and this school year got strep for the first time. Which he finally managed to pass to his sister and I. Nobody has ever gotten sick from him until now. I always thought that was fishy as well. I started bringing him to a doctor who knew I had had it with doctors and was determined to help us and figure out what was wrong with Sammy. He has had blood work done twice, and the only thing that shows up abnormal is when he is sick his white blood cell count is a bit high. I actually mentioned to the doctor of . He then started to look into it, and thought that for sure that was what was wrong with Sammy. He had never heard of . So that is where we are with all this. I chose not to do the steriods, as I don't see how that can be good for our children to have every few weeks just to make the episode go away. It doen't seem to make the problem go away just mask it for the time being. We did get a prescription filled of the Cimetimdine and are trying to decide wether to do it or not. I am not a fan of giving drugs to my son everyday for who knows how long. Does it bother anybody else, or if you are using it for your child does it seem to be safe and really helpful? We are not sure of the next steps but am glad that maybe there is some answers. Other than Sammy getting fevers every 5 weeks for three days, he is a very healthy and happy child , who is in second grade, loves to play sports, and is very active. Wish you all well this winter as it seems are kids are still able to pick up other bugs in addition to their fevers. Kim Thurmond Fairview, NC mother of Sammy and Lilly ____________ _________ _________ _________ _________ __ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 Kim, My daughter kylie has been on cimetidine for about 5 and a half months. kylie used to get fevers evry 14 days and lasted for three days with fever spiking around 103.9. She barely had enough time to get well again and play for a couple of days , then it would be back. She aske me one time, " daddy , why am I always sick? " This came from a three year old. It broke my heart, I didn't have an answer for her, and there was nothing I could do except dump tylenol and motrin down her throat every three hours and pray that the fevers would go away. We put her on the cimetidine hoping for any kind of results. If it is truly the cimetidine working kylie has been pretty much fever free for about four months. There was an episode, but very mild. I will gladly except thid over every two weeks. Now her only question is why do I half to take medicine all the time? hope this helps. father to kylie Introduction Hi My Name is Kim Thurmond, I am a the mother of Sammy(7yrs) and Lilly (4yrs). Sammy is my son who has . He hasn't gone through all the testing that alot of other children have gone through, (I am not sure that I want to go through all of that) but he seems to be the classic case of . When he was a baby (after 1yr) he would get sick with high fevers 105-106 and we would take him to the doctors and they could never find anythin g wrong with him other than the fevers. So he would have a virus they would say. So that went on for a long time. Back then it wasn't every 5 weeks, but at least every other month or so. I thought for sure that he got sick more often then the other babies that I knew. He would always be sick for exactly 3 days. So then I thought that maybe he had such a strong immune that he just burned off all his viruses and that was why he had no other symptoms. I stoped taking him to the doctors because it started to be a waste of money and time. The older he got the more questions and frustrations I had with the whole thing. So last October I decided that I would write down on a calender when he would get sick. He got sick every month for three days. I started taking him to different doctors and some would listen to my story and concern that he got sick more often then the normal children that we knew. Most just wanted to take out his tonsils. I didn't think that made much sense, since he never complained of sore throat, never had strep. etc. So my husband and I decided to do our own research and found out about . Everything came together after that. The symptoms that he had, and needed for a diagnoses were present. Sammy always had canker sores (which I never put two and two together or mentioned to a doctor) , always had the high fevers which we controled with Motrin and Tylenol, always had the bad head aches, leg aches, and completly life less for those days, and had the swollen gland, with no other symptoms. Once the three days are up everything goes away. When he is sick his canker sores get very big in his mouth, does anybody know of ways to help heal them faster? Since last October, only twice has he been sick with something other than his episodes. Once the begining of Pnemonia, and this school year got strep for the first time. Which he finally managed to pass to his sister and I. Nobody has ever gotten sick from him until now. I always thought that was fishy as well. I started bringing him to a doctor who knew I had had it with doctors and was determined to help us and figure out what was wrong with Sammy. He has had blood work done twice, and the only thing that shows up abnormal is when he is sick his white blood cell count is a bit high. I actually mentioned to the doctor of . He then started to look into it, and thought that for sure that was what was wrong with Sammy. He had never heard of . So that is where we are with all this. I chose not to do the steriods, as I don't see how that can be good for our children to have every few weeks just to make the episode go away. It doen't seem to make the problem go away just mask it for the time being. We did get a prescription filled of the Cimetimdine and are trying to decide wether to do it or not. I am not a fan of giving drugs to my son everyday for who knows how long. Does it bother anybody else, or if you are using it for your child does it seem to be safe and really helpful? We are not sure of the next steps but am glad that maybe there is some answers. Other than Sammy getting fevers every 5 weeks for three days, he is a very healthy and happy child , who is in second grade, loves to play sports, and is very active. Wish you all well this winter as it seems are kids are still able to pick up other bugs in addition to their fevers. Kim Thurmond Fairview, NC mother of Sammy and Lilly __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 - Has Kylie experienced any stomach pain since she's been on the Cimetidine? Does she take it daily, even when fevers are not present or only once they begin? I tried this with our daughter (only 9 months old) and it definitely seemed to change her fever- for the better but seems to really have aggravated her stomach as well. Even fever free, she's not able to sleep on her tummy now, which her is normally her position of choice. Before using the cimetidine, she'd have sleepless nights during the fever but afterwards was back to being a great (tummy) sleeper. We've had 2 fevers in 3 weeks and haven't slept since. I stopped the Cimetidine a couple of days ago and it hasn't changed her uncomfortableness. Just wondered if anyone else has seen the same side effects or if something else is going on. , mom to Riley (just a mess!) > > Kim, > > My daughter kylie has been on cimetidine for about 5 and a half months. kylie used to get fevers evry 14 days and lasted for three days with fever spiking around 103.9. She barely had enough time to get well again and play for a couple of days , then it would be back. She aske me one time, " daddy , why am I always sick? " This came from a three year old. It broke my heart, I didn't have an answer for her, and there was nothing I could do except dump tylenol and motrin down her throat every three hours and pray that the fevers would go away. We put her on the cimetidine hoping for any kind of results. If it is truly the cimetidine working kylie has been pretty much fever free for about four months. There was an episode, but very mild. I will gladly except thid over every two weeks. Now her only question is why do I half to take medicine all the time? hope this helps. > > father to kylie > Introduction > > > Hi > My Name is Kim Thurmond, I am a the mother of Sammy(7yrs) and Lilly (4yrs). Sammy is my son who has . He hasn't gone through all the testing that alot of other children have gone through, (I am not sure that I want to go through all of that) but he seems to be the classic case of . When he was a baby (after 1yr) he would get sick with high fevers 105-106 and we would take him to the doctors and they could never find anythin g wrong with him other than the fevers. So he would have a virus they would say. So that went on for a long time. Back then it wasn't every 5 weeks, but at least every other month or so. I thought for sure that he got sick more often then the other babies that I knew. He would always be sick for exactly 3 days. So then I thought that maybe he had such a strong immune that he just burned off all his viruses and that was why he had no other symptoms. I stoped taking him to the doctors because it started to be a waste of money and time. > The older he got the more questions and frustrations I had with the whole thing. > > So last October I decided that I would write down on a calender when he would get sick. He got sick every month for three days. I started taking him to different doctors and some would listen to my story and concern that he got sick more often then the normal children that we knew. Most just wanted to take out his tonsils. I didn't think that made much sense, since he never complained of sore throat, never had strep. etc. > > So my husband and I decided to do our own research and found out about . Everything came together after that. The symptoms that he had, and needed for a diagnoses were present. Sammy always had canker sores (which I never put two and two together or mentioned to a doctor) , always had the high fevers which we controled with Motrin and Tylenol, always had the bad head aches, leg aches, and completly life less for those days, and had the swollen gland, with no other symptoms. Once the three days are up everything goes away. When he is sick his canker sores get very big in his mouth, does anybody know of ways to help heal them faster? > > Since last October, only twice has he been sick with something other than his episodes. Once the begining of Pnemonia, and this school year got strep for the first time. Which he finally managed to pass to his sister and I. Nobody has ever gotten sick from him until now. I always thought that was fishy as well. I started bringing him to a doctor who knew I had had it with doctors and was determined to help us and figure out what was wrong with Sammy. He has had blood work done twice, and the only thing that shows up abnormal is when he is sick his white blood cell count is a bit high. > > I actually mentioned to the doctor of . He then started to look into it, and thought that for sure that was what was wrong with Sammy. He had never heard of . So that is where we are with all this. I chose not to do the steriods, as I don't see how that can be good for our children to have every few weeks just to make the episode go away. It doen't seem to make the problem go away just mask it for the time being. We did get a prescription filled of the Cimetimdine and are trying to decide wether to do it or not. I am not a fan of giving drugs to my son everyday for who knows how long. Does it bother anybody else, or if you are using it for your child does it seem to be safe and really helpful? > > We are not sure of the next steps but am glad that maybe there is some answers. Other than Sammy getting fevers every 5 weeks for three days, he is a very healthy and happy child , who is in second grade, loves to play sports, and is very active. > Wish you all well this winter as it seems are kids are still able to pick up other bugs in addition to their fevers. > > Kim Thurmond > Fairview, NC > mother of Sammy and Lilly > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 jennifer, Yes, I have noticed kylie complaining that her tummy bothers her more than normal, even when not fevering. I have noticed that has been more frequent since on the cimetidine. BUT, Kylie also tends to " forget " or maybe " hold off " on going potty sometimes. There have been a couple of times that she has complained of her stomach hurting, then I ask if she needs to go to the bathroom, and she says " oh yeah " then it seems to be better. As for sleeping, she to does not sleep very well either. It is hard to say that it is because of the cimetidine though, when she was fevering every two weeks there were so many sleepless nights that it is hard to remember. Kylie still usually takes a nap during the day, but will wake to the littlest sounds. Kylie takes 2.5 ml twice a day, everyday, not just at onset of fevers. I do believe that it is supposed to be given everyday, two times a day at highest dosage for body weight to see best results. Check with Fran, but I am almost certain that is the way it is supposed to be done. You also need to haver liver enzymes checked every 4-6 months. Cimetidine is supposed to help settle the stomach, so I am uncertain of why it would cause stomach pain. This may be a good question to bring up at one of our next doctor visits. Hope any of this helped. father to kylie Introduction > > > Hi > My Name is Kim Thurmond, I am a the mother of Sammy(7yrs) and Lilly (4yrs). Sammy is my son who has . He hasn't gone through all the testing that alot of other children have gone through, (I am not sure that I want to go through all of that) but he seems to be the classic case of . When he was a baby (after 1yr) he would get sick with high fevers 105-106 and we would take him to the doctors and they could never find anythin g wrong with him other than the fevers. So he would have a virus they would say. So that went on for a long time. Back then it wasn't every 5 weeks, but at least every other month or so. I thought for sure that he got sick more often then the other babies that I knew. He would always be sick for exactly 3 days. So then I thought that maybe he had such a strong immune that he just burned off all his viruses and that was why he had no other symptoms. I stoped taking him to the doctors because it started to be a waste of money and time. > The older he got the more questions and frustrations I had with the whole thing. > > So last October I decided that I would write down on a calender when he would get sick. He got sick every month for three days. I started taking him to different doctors and some would listen to my story and concern that he got sick more often then the normal children that we knew. Most just wanted to take out his tonsils. I didn't think that made much sense, since he never complained of sore throat, never had strep. etc. > > So my husband and I decided to do our own research and found out about . Everything came together after that. The symptoms that he had, and needed for a diagnoses were present. Sammy always had canker sores (which I never put two and two together or mentioned to a doctor) , always had the high fevers which we controled with Motrin and Tylenol, always had the bad head aches, leg aches, and completly life less for those days, and had the swollen gland, with no other symptoms. Once the three days are up everything goes away. When he is sick his canker sores get very big in his mouth, does anybody know of ways to help heal them faster? > > Since last October, only twice has he been sick with something other than his episodes. Once the begining of Pnemonia, and this school year got strep for the first time. Which he finally managed to pass to his sister and I. Nobody has ever gotten sick from him until now. I always thought that was fishy as well. I started bringing him to a doctor who knew I had had it with doctors and was determined to help us and figure out what was wrong with Sammy. He has had blood work done twice, and the only thing that shows up abnormal is when he is sick his white blood cell count is a bit high. > > I actually mentioned to the doctor of . He then started to look into it, and thought that for sure that was what was wrong with Sammy. He had never heard of . So that is where we are with all this. I chose not to do the steriods, as I don't see how that can be good for our children to have every few weeks just to make the episode go away. It doen't seem to make the problem go away just mask it for the time being. We did get a prescription filled of the Cimetimdine and are trying to decide wether to do it or not. I am not a fan of giving drugs to my son everyday for who knows how long. Does it bother anybody else, or if you are using it for your child does it seem to be safe and really helpful? > > We are not sure of the next steps but am glad that maybe there is some answers. Other than Sammy getting fevers every 5 weeks for three days, he is a very healthy and happy child , who is in second grade, loves to play sports, and is very active. > Wish you all well this winter as it seems are kids are still able to pick up other bugs in addition to their fevers. > > Kim Thurmond > Fairview, NC > mother of Sammy and Lilly > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 , Comment on Cimetidine. IT MUST be given daily or it does not work. You were asking another member about his child... Just wanted to clarify for the group.... Cimetidine acts as an auto-immune regulator. It is given BID or TWICE a day for about 6 months. It sometimes works within the first few weeks... and occasionally no change is seen for 3-4 months. The child will usually stay on the medication for an additional 6 months if it has a positive effect during the initial treatment period and then weans off.... 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...
Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 Thanks, Fran! I will begin giving it to her again and work through the stomach issues. It definitely CHANGED her last 2 fevers for the better- lower temp (only up to 103's when it's usually 105-106)and responded to tylenol/motrin. She also continued to eat/drink and had less vomiting. I appreciate you and your willingness to help others deal with these crazy fevers!!! , mom to Riley, 9 mo > > , > Comment on Cimetidine. IT MUST be given daily or it does not work. You were asking another member about his child... Just wanted to clarify for the group.... Cimetidine acts as an auto-immune regulator. It is given BID or TWICE a day for about 6 months. It sometimes works within the first few weeks... and occasionally no change is seen for 3-4 months. The child will usually stay on the medication for an additional 6 months if it has a positive effect during the initial treatment period and then weans off.... > > 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...
Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 Fran, I realize that cimetedine given to one of our children acts as an auto immune regulator, but isnt it also a stomach medicine? What do you think the reason for the stomach issues some of us are noticing with the cimetidine? Thank you for your words. father to kylie 3 Re: Introduction Thanks, Fran! I will begin giving it to her again and work through the stomach issues. It definitely CHANGED her last 2 fevers for the better- lower temp (only up to 103's when it's usually 105-106)and responded to tylenol/motrin. She also continued to eat/drink and had less vomiting. I appreciate you and your willingness to help others deal with these crazy fevers!!! , mom to Riley, 9 mo > > , > Comment on Cimetidine. IT MUST be given daily or it does not work. You were asking another member about his child... Just wanted to clarify for the group.... Cimetidine acts as an auto-immune regulator. It is given BID or TWICE a day for about 6 months. It sometimes works within the first few weeks... and occasionally no change is seen for 3-4 months. The child will usually stay on the medication for an additional 6 months if it has a positive effect during the initial treatment period and then weans off.... > > 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...
Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 Hi Cimetidine is one of the original " ulcer " meds. Used for many years (Tagamet) for gastritis too.... That is its primary use.... Later the research docs noticed the auto-immune regualating effect... and have since tried it on a few things.. As for stomach issues. if you read the archives there are some milder side effects... constipation for some... and the opposite having loose stools for others! These would both cause stomach issues... They are considered side effects... so they do occur rarely but they do occur... 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...
Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 >- Thanks for you email! Riley was on 2 ml 2x a day and we've already got her back on it. Being off it for 3 days hasn't seemed to make a difference in her discomfort anyway. We'll be moving in a couple of weeks and am searching for a dr in the Atlanta area that is familiar with PFS. We've only scratched the surface of all the testing that needs to be done and hate to start all over with someone new. Thanks for sharing your info! I feel like I learn more on this site than I do from doctors! , mom to Riley, 9 months > jennifer, > > Yes, I have noticed kylie complaining that her tummy bothers her more than normal, even when not fevering. I have noticed that has been more frequent since on the cimetidine. BUT, Kylie also tends to " forget " or maybe " hold off " on going potty sometimes. There have been a couple of times that she has complained of her stomach hurting, then I ask if she needs to go to the bathroom, and she says " oh yeah " then it seems to be better. As for sleeping, she to does not sleep very well either. It is hard to say that it is because of the cimetidine though, when she was fevering every two weeks there were so many sleepless nights that it is hard to remember. Kylie still usually takes a nap during the day, but will wake to the littlest sounds. Kylie takes 2.5 ml twice a day, everyday, not just at onset of fevers. I do believe that it is supposed to be given everyday, two times a day at highest dosage for body weight to see best results. Check with Fran, but I am almost certain that is the way it is supposed to be done. You also need to haver liver enzymes checked every 4-6 months. Cimetidine is supposed to help settle the stomach, so I am uncertain of why it would cause stomach pain. This may be a good question to bring up at one of our next doctor visits. Hope any of this helped. > > father to kylie > Introduction > > > > > > Hi > > My Name is Kim Thurmond, I am a the mother of Sammy(7yrs) and > Lilly (4yrs). Sammy is my son who has . He hasn't gone through > all the testing that alot of other children have gone through, (I am > not sure that I want to go through all of that) but he seems to be > the classic case of . When he was a baby (after 1yr) he would > get sick with high fevers 105-106 and we would take him to the > doctors and they could never find anythin g wrong with him other > than the fevers. So he would have a virus they would say. So that > went on for a long time. Back then it wasn't every 5 weeks, but at > least every other month or so. I thought for sure that he got sick > more often then the other babies that I knew. He would always be > sick for exactly 3 days. So then I thought that maybe he had such a > strong immune that he just burned off all his viruses and that was > why he had no other symptoms. I stoped taking him to the doctors > because it started to be a waste of money and time. > > The older he got the more questions and frustrations I had with > the whole thing. > > > > So last October I decided that I would write down on a calender > when he would get sick. He got sick every month for three days. I > started taking him to different doctors and some would listen to my > story and concern that he got sick more often then the normal > children that we knew. Most just wanted to take out his tonsils. I > didn't think that made much sense, since he never complained of sore > throat, never had strep. etc. > > > > So my husband and I decided to do our own research and found out > about . Everything came together after that. The symptoms that > he had, and needed for a diagnoses were present. Sammy always had > canker sores (which I never put two and two together or mentioned to > a doctor) , always had the high fevers which we controled with > Motrin and Tylenol, always had the bad head aches, leg aches, and > completly life less for those days, and had the swollen gland, with > no other symptoms. Once the three days are up everything goes away. > When he is sick his canker sores get very big in his mouth, does > anybody know of ways to help heal them faster? > > > > Since last October, only twice has he been sick with something > other than his episodes. Once the begining of Pnemonia, and this > school year got strep for the first time. Which he finally managed > to pass to his sister and I. Nobody has ever gotten sick from him > until now. I always thought that was fishy as well. I started > bringing him to a doctor who knew I had had it with doctors and was > determined to help us and figure out what was wrong with Sammy. He > has had blood work done twice, and the only thing that shows up > abnormal is when he is sick his white blood cell count is a bit > high. > > > > I actually mentioned to the doctor of . He then started to > look into it, and thought that for sure that was what was wrong with > Sammy. He had never heard of . So that is where we are with all > this. I chose not to do the steriods, as I don't see how that can be > good for our children to have every few weeks just to make the > episode go away. It doen't seem to make the problem go away just > mask it for the time being. We did get a prescription filled of the > Cimetimdine and are trying to decide wether to do it or not. I am > not a fan of giving drugs to my son everyday for who knows how long. > Does it bother anybody else, or if you are using it for your child > does it seem to be safe and really helpful? > > > > We are not sure of the next steps but am glad that maybe there > is some answers. Other than Sammy getting fevers every 5 weeks for > three days, he is a very healthy and happy child , who is in second > grade, loves to play sports, and is very active. > > Wish you all well this winter as it seems are kids are still > able to pick up other bugs in addition to their fevers. > > > > Kim Thurmond > > Fairview, NC > > mother of Sammy and Lilly > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2006 Report Share Posted October 23, 2006 - Which dr did you see at Emory? We are moving there in a couple of weeks and would LOVE to find a dr familiar with these fevers. Our daughter is only 9 months old but has had fevers since birth. We're trying Cimetidine now- we've had 2 fevers since but neither were as bad. Did your pediatrician send you to Emory? , mom to Riley, Connor and Zack > > Hi my name is My 20 month old son Landon has had fevers for > about 8 months. Last month the doctor at Emory University dignosed > him with and put him on Cimetine. Is anyone else from the > Atlanta area? Does anyone the average age this ends. I am pretty > confused about the illness and no one has heard of it. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 & ; I live in the same town as now and my husband and I went to Georgia during spring break to look at the area near his mother (Maysville) we choose Jefferson, Georgia about an hour outside of Atlanta, I would like to know if you see a Rheumatologist in the area?? or an Infectious Disease Doctor?? We have held off on the move because of Tyler's illness and the housing market but I don't see Tyler's condition or the housing market changing anytime soon. I would love both of your input on area doctors. Thanks!!! Kim Ingalls Tyler 6 (FPAPA???) le 12 Keri 10 Fredericksburg, VA (unitl our house sells) jmaloney0802 <jmal0802@...> wrote: - Which dr did you see at Emory? We are moving there in a couple of weeks and would LOVE to find a dr familiar with these fevers. Our daughter is only 9 months old but has had fevers since birth. We're trying Cimetidine now- we've had 2 fevers since but neither were as bad. Did your pediatrician send you to Emory? , mom to Riley, Connor and Zack > > Hi my name is My 20 month old son Landon has had fevers for > about 8 months. Last month the doctor at Emory University dignosed > him with and put him on Cimetine. Is anyone else from the > Atlanta area? Does anyone the average age this ends. I am pretty > confused about the illness and no one has heard of it. > --------------------------------- All-new - Fire up a more powerful email and get things done faster. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 ; Just wanted to let you know my son didn't start fevering until he was 5 years old we are about 9 or 10 months into this and our Rheumatologist isn't sure about it being because my son doesn't get the ulcers in the mouth but he did do some blood work looking for gentic markers and wants to do more genetic testing after three more months of fevers. He said my son was kind of old for but I have read about other children on this site that were older as well. We are do for a fever this weekend. We too have decided not to go with steroids. Good luck. Kim Ingalls Tyler 6 ??? le 12 Keri 10 fieldhockey93 <kkjtskjohnson@...> wrote: My name is and I am the mother of 7 1/2 yr old . started with fevers the day he turned 7. At first they were every 6 wks. Then they just stopped for the summer. The week before school began they started up again except this time they were every 3 wks. He has done this since the start of school in Aug. The Dr. is hesitant to diagnosis him as having since his fevers didn't start till age 7. However no other reason for the fevers has been found. We tried steroids during this last episode. Day one of the steroids it stopped his fevers till morning. I gave him Advil and the second dose and he made it through the school day without a fever. But then the fevers started up again that night and continued for another 4 days with higher temps than ever before. I don't think I will be trying steroids again. A friend from church has a child with and told me about this group. Greenfield, IN --------------------------------- All-new - Fire up a more powerful email and get things done faster. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 > > > > Hi my name is My 20 month old son Landon has had fevers for > > about 8 months. Last month the doctor at Emory University dignosed > > him with and put him on Cimetine. Is anyone else from the > > Atlanta area? Does anyone the average age this ends. I am pretty > > confused about the illness and no one has heard of it. > > > > > > > > > --------------------------------- > All-new - Fire up a more powerful email and get things done faster. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 > > > > Hi my name is My 20 month old son Landon has had fevers for > > about 8 months. Last month the doctor at Emory University dignosed > > him with and put him on Cimetine. Is anyone else from the > > Atlanta area? Does anyone the average age this ends. I am pretty > > confused about the illness and no one has heard of it. > > > > > > > > > --------------------------------- > All-new - Fire up a more powerful email and get things done faster. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2006 Report Share Posted October 27, 2006 hi joanna welcome. yes it helps me to plan ahead sometimes. sometimes i might pick another workout but at least when i say i am doing something i am setting "that appointment" with myself so i can stick with it. kassia Get your own web address for just $1.99/1st yr. We'll help. Small Business. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2006 Report Share Posted October 27, 2006 Welcome Joanna!! I'm , from Michigan, or as I've noticed some of my British (former) coworkers say "Mitch i gan". I'm 39, closing in on 40 with two kids and not many workout videos because I'm just getting started on this so I don't have any advice but you can be sure you'll get some great ideas from many people here! Just wanted to say hi and welcome! Introduction Hi everyone Figured it was about time I unlurked (delurked? ) and said hallo. I'm Joanna, 34, in the UK (essex, about 40 miles east of london), happily married (for 18 months so we're still all newlywedish ), no kids but 2 cats. Ive worked out on and off since my teens although a lot more off than on, for the last few months Ive been making a regular effort and found it to be really helpful with mental health stuff that I have (bipolar, anxiety) and have also lost a few inches and gained some muscles which is all good in a strong body strong mind kind of a way. I have a random selection of workouts culled from various budget sources (second hand, I'm on disability so have to budget). I got restarted when I came across Turbo Jam, Chalene is so perky and un english (all that blonde tanned Californian enthusiasm!) that she made me stick to it. Then I found some tae bo which I like as well although I can't understand a lot of what Blanks says (when he talks fast it sound like boomhauer from king of the hill ). I was just flipping through the workouts and deciding what to do but reading this list made me realise that it definately pays to plan in advance ( Ive found the less thinking I have to do the more likely I am to just do it). Where do you all get your rotation plans from? Anyway, I will now hit send and go and actually... work out Today is tae bo cardio, The cats run and hide when I start kicking (theyre not as stupid as people think ) Joanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2006 Report Share Posted October 27, 2006 In a message dated 10/27/2006 7:47:21 A.M. US Eastern Standard Time, nancydewolf@... writes: Figured it was about time I unlurked (delurked? ) and said hallo. I'm Joanna, 34, in the UK Hi Joanna! Glad you came out of lurking. I'm , 37 from Indiana. Nice to have you join the group. There is a great bunch of people here. Hope to hear more from you. Quote Link to comment Share on other sites More sharing options...
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