Guest guest Posted July 1, 2008 Report Share Posted July 1, 2008 Welcome Francesca, You will find a ton of information and support on this site. Look through the articles, and also search the archive emails for topics that interest you. There is so much information here - and everyone knows what you've been going through. It sounds like you are on the right track to diagnosis. I'm sorry that you need this site - but at least you found us! Ginger Daughter - le, almost 3 years old (fevering since 7 months, diagnosed at 15 months, T & A on 12/11/07, Fever-free since 11/16/07) Son - Jay, 1 year old Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2008 Report Share Posted July 1, 2008 Ginger, Thank you, I am so glad I found this site. It is nice to meet others that know what Periodic fever syndromes are like. I noticed in your signaure that your daughter hasn't had any more fevers Congratulations!That is awesome! I can't wait for that day. Do you think that the T & A is what finally got them to stop? We just got referred to a ENT at Valley Childrens Hospital, and we are hoping that a T & A may stop her episodes. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2008 Report Share Posted July 1, 2008 Ginger, Thank you, I am so glad I found this site. It is nice to meet others that know what Periodic fever syndromes are like. I noticed in your signaure that your daughter hasn't had any more fevers Congratulations!That is awesome! I can't wait for that day. Do you think that the T & A is what finally got them to stop? We just got referred to a ENT at Valley Childrens Hospital, and we are hoping that a T & A may stop her episodes. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2008 Report Share Posted July 1, 2008 Ginger, Thank you, I am so glad I found this site. It is nice to meet others that know what Periodic fever syndromes are like. I noticed in your signaure that your daughter hasn't had any more fevers Congratulations!That is awesome! I can't wait for that day. Do you think that the T & A is what finally got them to stop? We just got referred to a ENT at Valley Childrens Hospital, and we are hoping that a T & A may stop her episodes. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2008 Report Share Posted July 30, 2008 Joan K wrote: > Hi, > > I've been interested in commercial perfumes for a while. More > recently I've been interested in oudh/agarwood and Middle Eastern > perfume oils. I like sandalwood and I was fortunate enough to put > away a bottle of Mysore sandalwood a few years ago. I'd like to make > a perfume with a bit of it but I need to learn more about essential > oils and perfumer's alcohol. I am also a fan of orris and I would > like to learn more about orris butter/concrete and its use in perfumes. Hi Joan Welcome to the group. Read the archives, try to picture in your mind what you want your perfume to smell like, and then ask questions here, where we might be able to help you tweak it. -- Anya Anya's Garden http://AnyasGarden.com - perfumes, aromatics, classes, consultation Natural Perfumers Guild + blog with daily updates 1500+ member Natural Perfumery group - / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2008 Report Share Posted August 8, 2008 Pam, It is very frustrating, I know. Pfapa is a diagnosis of exclusion. I think it is very unfortunate that so many doctors act like they understand this disorder but don't feel the need to exclude genetic disorders that are so similar! I know there are several people on this group (Fran included) who have children that were given the Pfapa diagnosis only to find out later through genetic testing that it is something else. My three boys each started fevering at 8 months old. is my oldest - he never really had a predictable pattern (ie - every 21 days). His fevers would vary in frequency - as close as 2 weeks and as far apart as 2 months. He has chills (where his hand turn blue) abdominal issues, joint pain and rash with his fevers. We were seeing the specialist I spoke of earlier when our middle child turned 8 months old and started fevering as well. With two fevering and the additional symptoms we felt it was pretty clear that our children needed further testing! Our third son began fevering around 8 months of age as well. They have all three tested negative for all known genetic mutations but the researchers are working to find more about these disorders everyday and we are hopeful that someday we'll have a solid answer. As of now, they are just PFS. Doctors need to know that there are different treatments and outcomes for the different types of PFS. Just saying it's and not a big deal because they'll out grow it is not good enough! I think that all of our children should have the testing completed but that may be just my opinion. One thing is for certain - if you are ever uncomfortable about what a doctor tells you follow your instinct!!! You are your children's only true advocate! In my opinion, a doctor who takes these fever syndromes lightly does not have a clear understanding of PFS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2008 Report Share Posted August 8, 2008 Pam, It is very frustrating, I know. Pfapa is a diagnosis of exclusion. I think it is very unfortunate that so many doctors act like they understand this disorder but don't feel the need to exclude genetic disorders that are so similar! I know there are several people on this group (Fran included) who have children that were given the Pfapa diagnosis only to find out later through genetic testing that it is something else. My three boys each started fevering at 8 months old. is my oldest - he never really had a predictable pattern (ie - every 21 days). His fevers would vary in frequency - as close as 2 weeks and as far apart as 2 months. He has chills (where his hand turn blue) abdominal issues, joint pain and rash with his fevers. We were seeing the specialist I spoke of earlier when our middle child turned 8 months old and started fevering as well. With two fevering and the additional symptoms we felt it was pretty clear that our children needed further testing! Our third son began fevering around 8 months of age as well. They have all three tested negative for all known genetic mutations but the researchers are working to find more about these disorders everyday and we are hopeful that someday we'll have a solid answer. As of now, they are just PFS. Doctors need to know that there are different treatments and outcomes for the different types of PFS. Just saying it's and not a big deal because they'll out grow it is not good enough! I think that all of our children should have the testing completed but that may be just my opinion. One thing is for certain - if you are ever uncomfortable about what a doctor tells you follow your instinct!!! You are your children's only true advocate! In my opinion, a doctor who takes these fever syndromes lightly does not have a clear understanding of PFS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2008 Report Share Posted August 8, 2008 Pam, It is very frustrating, I know. Pfapa is a diagnosis of exclusion. I think it is very unfortunate that so many doctors act like they understand this disorder but don't feel the need to exclude genetic disorders that are so similar! I know there are several people on this group (Fran included) who have children that were given the Pfapa diagnosis only to find out later through genetic testing that it is something else. My three boys each started fevering at 8 months old. is my oldest - he never really had a predictable pattern (ie - every 21 days). His fevers would vary in frequency - as close as 2 weeks and as far apart as 2 months. He has chills (where his hand turn blue) abdominal issues, joint pain and rash with his fevers. We were seeing the specialist I spoke of earlier when our middle child turned 8 months old and started fevering as well. With two fevering and the additional symptoms we felt it was pretty clear that our children needed further testing! Our third son began fevering around 8 months of age as well. They have all three tested negative for all known genetic mutations but the researchers are working to find more about these disorders everyday and we are hopeful that someday we'll have a solid answer. As of now, they are just PFS. Doctors need to know that there are different treatments and outcomes for the different types of PFS. Just saying it's and not a big deal because they'll out grow it is not good enough! I think that all of our children should have the testing completed but that may be just my opinion. One thing is for certain - if you are ever uncomfortable about what a doctor tells you follow your instinct!!! You are your children's only true advocate! In my opinion, a doctor who takes these fever syndromes lightly does not have a clear understanding of PFS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2008 Report Share Posted August 9, 2008 Hi Lindsey, Welcome to the group, this is a great place for parents to find information or just talk to others that know what you are going through. You asked about a good doctor that might be more familiar with the symdrome. I would suggest asking your pediatrician for a referal to see a rheumetologist and or an infectious disease doctor at the childrens hospital, they will be able to run the tests to rule out other periodic fever syndromes, as well as help manage your childs fevers. You are doing the right thing by keeping track of the fevers, it is always good to have a record on hand. Sincerely, Francesca mommy to Ally 2years 2months fevering since 8months and Kylie 2months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2008 Report Share Posted August 9, 2008 Hi Lindsey, Welcome to the group, this is a great place for parents to find information or just talk to others that know what you are going through. You asked about a good doctor that might be more familiar with the symdrome. I would suggest asking your pediatrician for a referal to see a rheumetologist and or an infectious disease doctor at the childrens hospital, they will be able to run the tests to rule out other periodic fever syndromes, as well as help manage your childs fevers. You are doing the right thing by keeping track of the fevers, it is always good to have a record on hand. Sincerely, Francesca mommy to Ally 2years 2months fevering since 8months and Kylie 2months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2008 Report Share Posted August 9, 2008 Hi Lindsey, Welcome to the group, this is a great place for parents to find information or just talk to others that know what you are going through. You asked about a good doctor that might be more familiar with the symdrome. I would suggest asking your pediatrician for a referal to see a rheumetologist and or an infectious disease doctor at the childrens hospital, they will be able to run the tests to rule out other periodic fever syndromes, as well as help manage your childs fevers. You are doing the right thing by keeping track of the fevers, it is always good to have a record on hand. Sincerely, Francesca mommy to Ally 2years 2months fevering since 8months and Kylie 2months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2008 Report Share Posted August 9, 2008 - we are in North Atlanta, too. We are in Alpharetta. We have gotten very fortunate that our pediatrician has several patients, so he quickly identified what my daughter had after several fevers well over 105. We saw an immunologist at Emory for a while, but Cimetidine did not work for my daughter. She also got quite aggressive on Prednisone, and her fevers got to be about 10-12 days apart. So, we opted to see an ENT - he also had had several patients, and after looking at our record of illnesses/episodes and also at the Pediatricians records - he quickly suggested a T & A. le has been fever free since --- she had the T & A 12/10/07 and her last episode was 11/16/07. She just turned 3 a couple of weeks ago. I highly recommend our pediatrician - Dr. Roy Benaroch; and our ENT - Dr. Thomsen. I'd be happy to give you any other information if you are interested. ginger.hackett@... Ginger Daughter - le, 3 years old (fevering since 7 months, diagnosed at 15 months, T & A on 12/11/07, Fever-free since 11/16/07) Son - Jay, 15 months old Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2008 Report Share Posted August 9, 2008 - we are in North Atlanta, too. We are in Alpharetta. We have gotten very fortunate that our pediatrician has several patients, so he quickly identified what my daughter had after several fevers well over 105. We saw an immunologist at Emory for a while, but Cimetidine did not work for my daughter. She also got quite aggressive on Prednisone, and her fevers got to be about 10-12 days apart. So, we opted to see an ENT - he also had had several patients, and after looking at our record of illnesses/episodes and also at the Pediatricians records - he quickly suggested a T & A. le has been fever free since --- she had the T & A 12/10/07 and her last episode was 11/16/07. She just turned 3 a couple of weeks ago. I highly recommend our pediatrician - Dr. Roy Benaroch; and our ENT - Dr. Thomsen. I'd be happy to give you any other information if you are interested. ginger.hackett@... Ginger Daughter - le, 3 years old (fevering since 7 months, diagnosed at 15 months, T & A on 12/11/07, Fever-free since 11/16/07) Son - Jay, 15 months old Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2008 Report Share Posted August 9, 2008 - we are in North Atlanta, too. We are in Alpharetta. We have gotten very fortunate that our pediatrician has several patients, so he quickly identified what my daughter had after several fevers well over 105. We saw an immunologist at Emory for a while, but Cimetidine did not work for my daughter. She also got quite aggressive on Prednisone, and her fevers got to be about 10-12 days apart. So, we opted to see an ENT - he also had had several patients, and after looking at our record of illnesses/episodes and also at the Pediatricians records - he quickly suggested a T & A. le has been fever free since --- she had the T & A 12/10/07 and her last episode was 11/16/07. She just turned 3 a couple of weeks ago. I highly recommend our pediatrician - Dr. Roy Benaroch; and our ENT - Dr. Thomsen. I'd be happy to give you any other information if you are interested. ginger.hackett@... Ginger Daughter - le, 3 years old (fevering since 7 months, diagnosed at 15 months, T & A on 12/11/07, Fever-free since 11/16/07) Son - Jay, 15 months old Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2008 Report Share Posted August 18, 2008 Hi Jen,  Our son is also 2 1/2 and has been fevering since he was 3 months old. It took us awhile to figure out what was going on also, many-many tests. His cycle was every 2 weeks and spiked 105 with a few 106 highs. We eventually saw a rheumatologist who prescribed naproxen for him (an anti-inflammatory similar to motrin). While it did not stop the fevers, it helped control them much better than the motrin, and we would supplement the tylenol in between naproxen doses (which are only 12 hours apart). The trick is to get the naproxen in the system well before the fever starts, so she recommended he take it every day because his cycles were so close together. His fevers became 102 with a very few at 103 high. Much better than before, but still not gone.  We just had his tonsils and adenoids removed on Aug 5th - he was due for another fever on the 9th and didn't have it. Next fever would be due the 23rd...we are hoping for the best. The surgeon said most children run a low fever from the surgery - he never did. If it is something you are willing to do for your son I recommend it even though we do not know for sure if it has worked for our Tyler yet, it has worked for many others. The recovery at home was better than I expected, the overnight hospital stay was very unpleasant. He did not want to be there at all and hated the IV. That was the worst part, after coming home he did very well.  Best Wishes to your son and your family, Pruden Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2008 Report Share Posted August 18, 2008 Hi Jen,  Our son is also 2 1/2 and has been fevering since he was 3 months old. It took us awhile to figure out what was going on also, many-many tests. His cycle was every 2 weeks and spiked 105 with a few 106 highs. We eventually saw a rheumatologist who prescribed naproxen for him (an anti-inflammatory similar to motrin). While it did not stop the fevers, it helped control them much better than the motrin, and we would supplement the tylenol in between naproxen doses (which are only 12 hours apart). The trick is to get the naproxen in the system well before the fever starts, so she recommended he take it every day because his cycles were so close together. His fevers became 102 with a very few at 103 high. Much better than before, but still not gone.  We just had his tonsils and adenoids removed on Aug 5th - he was due for another fever on the 9th and didn't have it. Next fever would be due the 23rd...we are hoping for the best. The surgeon said most children run a low fever from the surgery - he never did. If it is something you are willing to do for your son I recommend it even though we do not know for sure if it has worked for our Tyler yet, it has worked for many others. The recovery at home was better than I expected, the overnight hospital stay was very unpleasant. He did not want to be there at all and hated the IV. That was the worst part, after coming home he did very well.  Best Wishes to your son and your family, Pruden Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2008 Report Share Posted August 18, 2008 Hi Jen,  Our son is also 2 1/2 and has been fevering since he was 3 months old. It took us awhile to figure out what was going on also, many-many tests. His cycle was every 2 weeks and spiked 105 with a few 106 highs. We eventually saw a rheumatologist who prescribed naproxen for him (an anti-inflammatory similar to motrin). While it did not stop the fevers, it helped control them much better than the motrin, and we would supplement the tylenol in between naproxen doses (which are only 12 hours apart). The trick is to get the naproxen in the system well before the fever starts, so she recommended he take it every day because his cycles were so close together. His fevers became 102 with a very few at 103 high. Much better than before, but still not gone.  We just had his tonsils and adenoids removed on Aug 5th - he was due for another fever on the 9th and didn't have it. Next fever would be due the 23rd...we are hoping for the best. The surgeon said most children run a low fever from the surgery - he never did. If it is something you are willing to do for your son I recommend it even though we do not know for sure if it has worked for our Tyler yet, it has worked for many others. The recovery at home was better than I expected, the overnight hospital stay was very unpleasant. He did not want to be there at all and hated the IV. That was the worst part, after coming home he did very well.  Best Wishes to your son and your family, Pruden Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2008 Report Share Posted August 19, 2008 Jen - I have not posted in a few years, as we thought our son, Calder, had outgrown . We received a cautious diagnosis when he was almost two and we lived in Bridgeport, WV, at WVU. We are now in sburg, WV (near you!) and it appears that Calder's fevers are returning. He has had three fevers since May and all have responded to the prednisone. We are working with Dr. Maina at Eastern Panhandle Pediatrics and he has read about on his own to help us out. However, we have started to think we need to get him back to a specialist and the infectious disease doctor we saw in town is no longer there. He also starts pre-kindergarten in a week and I want to explore some options regarding treatment. I would love to compare notes regarding doctors and/or specialists. By the way, we also had an excellent experience with our pediatricians in Bridgeport, WV when Calder started his fevers at 3 months. After several hospitalizations they had us come to their office and listen to a CME lecture they had found about and then they arranged for the consultation at WVU. We were amazed at the level of care we received! Alyssa Sloan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2008 Report Share Posted August 19, 2008 Jen - I have not posted in a few years, as we thought our son, Calder, had outgrown . We received a cautious diagnosis when he was almost two and we lived in Bridgeport, WV, at WVU. We are now in sburg, WV (near you!) and it appears that Calder's fevers are returning. He has had three fevers since May and all have responded to the prednisone. We are working with Dr. Maina at Eastern Panhandle Pediatrics and he has read about on his own to help us out. However, we have started to think we need to get him back to a specialist and the infectious disease doctor we saw in town is no longer there. He also starts pre-kindergarten in a week and I want to explore some options regarding treatment. I would love to compare notes regarding doctors and/or specialists. By the way, we also had an excellent experience with our pediatricians in Bridgeport, WV when Calder started his fevers at 3 months. After several hospitalizations they had us come to their office and listen to a CME lecture they had found about and then they arranged for the consultation at WVU. We were amazed at the level of care we received! Alyssa Sloan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2008 Report Share Posted August 19, 2008 Jen - I have not posted in a few years, as we thought our son, Calder, had outgrown . We received a cautious diagnosis when he was almost two and we lived in Bridgeport, WV, at WVU. We are now in sburg, WV (near you!) and it appears that Calder's fevers are returning. He has had three fevers since May and all have responded to the prednisone. We are working with Dr. Maina at Eastern Panhandle Pediatrics and he has read about on his own to help us out. However, we have started to think we need to get him back to a specialist and the infectious disease doctor we saw in town is no longer there. He also starts pre-kindergarten in a week and I want to explore some options regarding treatment. I would love to compare notes regarding doctors and/or specialists. By the way, we also had an excellent experience with our pediatricians in Bridgeport, WV when Calder started his fevers at 3 months. After several hospitalizations they had us come to their office and listen to a CME lecture they had found about and then they arranged for the consultation at WVU. We were amazed at the level of care we received! Alyssa Sloan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2008 Report Share Posted August 19, 2008 Hi Whitney,  My son also has fevered every 2 weeks, but only lasting 3 days of fever. Sometimes a day or two more to recover completely. It is extremely difficult when they are that close together. I don't know if the MD told you, but prednisone also brings the episodes closer together. I opted not to use it because of that.  We were referred to a rheumatologist at UC San Francisco's Children's Hospital when our son was about 16 months old. He had been fevering since 3 months, and it was a long road of testing to get to that point. The MD we saw there told us about naproxen and we started him on that. She said for some children it made the fevers stop completely, but I haven't heard of it working that way for anyone on here. It did help the fevers drop from always peaking at 105 -106 to 102-103. For us this made all the difference in the world. The catch is the naproxen had to be in the system before the fever hits. She said if we could predict it well enough to start about 2-3 days before. If not, she said to give it every day twice a day. During fevers stop the Motrin (they are both anti-inflammatories) and supplement with Tylenol inbetween.  He was on naproxen for over a year. I always made sure he had something on his stomach, or mixed it in food.  We just had his tonsils and adenoids removed on the 5th of August. He was due for an episode on the 9th and didn't have one. His next one would be due the 23rd. We are waiting on pins and needles to see if it works for him.  The dark circles and pale skin you mentioned is something many of the children with seem to have in common.  Tyler only had mouth sores that I know of twice. But he may have had them more and not let me know since he was so young. His lymph nodes were swollen often during episodes, and larger with the more severe ones.  Our new pediatrician actually mentioned having a T & A done when Tyler was just turning 2. He said to bring him in when his lymph nodes were swollen. They kept a record of it for insurance records to get the T & A approved.  There was a study posted on here where 26 of the 27 children, who had tonsils with or without adenoids removed, had the fevers stop afterward. I will try to send it to your email, I can't get it to load on the group site. Also there is an article by the MD who participated in the study that was in the Washington Post that is posted here. Search for it at the top of the messages ' study' should bring it up (you may have to look thru a few others to find it I believe it was in June).  Tyler's stomach always seemed to bother him, but they never found anything in all the testing.  We never saw hbg that was abnormal.  I had to change doctors a few times to find one that would listen to me. Then we moved and I had to search again. I actually had done research on the net and found this group before I found a doctor who knew about it, and then he was really only familiar with FMF. We did DNA testing to rule out a few other conditions before the MD's settled on .  It is very frustrating and disheartening to see our children go thru this and not be able to help them or even find a professional who seems to be able to. Honestly, without this group I don't know what I would have done (Thanks again to Fran for all the time you have spent keeping it going for us).  Hope this helps you some.  Pruden Tyler Pruden 2yr8mo fevering since 3mo - T & A Aug 5th...waiting Dylan Pruden 5 mo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2008 Report Share Posted August 19, 2008 Hi Whitney,  My son also has fevered every 2 weeks, but only lasting 3 days of fever. Sometimes a day or two more to recover completely. It is extremely difficult when they are that close together. I don't know if the MD told you, but prednisone also brings the episodes closer together. I opted not to use it because of that.  We were referred to a rheumatologist at UC San Francisco's Children's Hospital when our son was about 16 months old. He had been fevering since 3 months, and it was a long road of testing to get to that point. The MD we saw there told us about naproxen and we started him on that. She said for some children it made the fevers stop completely, but I haven't heard of it working that way for anyone on here. It did help the fevers drop from always peaking at 105 -106 to 102-103. For us this made all the difference in the world. The catch is the naproxen had to be in the system before the fever hits. She said if we could predict it well enough to start about 2-3 days before. If not, she said to give it every day twice a day. During fevers stop the Motrin (they are both anti-inflammatories) and supplement with Tylenol inbetween.  He was on naproxen for over a year. I always made sure he had something on his stomach, or mixed it in food.  We just had his tonsils and adenoids removed on the 5th of August. He was due for an episode on the 9th and didn't have one. His next one would be due the 23rd. We are waiting on pins and needles to see if it works for him.  The dark circles and pale skin you mentioned is something many of the children with seem to have in common.  Tyler only had mouth sores that I know of twice. But he may have had them more and not let me know since he was so young. His lymph nodes were swollen often during episodes, and larger with the more severe ones.  Our new pediatrician actually mentioned having a T & A done when Tyler was just turning 2. He said to bring him in when his lymph nodes were swollen. They kept a record of it for insurance records to get the T & A approved.  There was a study posted on here where 26 of the 27 children, who had tonsils with or without adenoids removed, had the fevers stop afterward. I will try to send it to your email, I can't get it to load on the group site. Also there is an article by the MD who participated in the study that was in the Washington Post that is posted here. Search for it at the top of the messages ' study' should bring it up (you may have to look thru a few others to find it I believe it was in June).  Tyler's stomach always seemed to bother him, but they never found anything in all the testing.  We never saw hbg that was abnormal.  I had to change doctors a few times to find one that would listen to me. Then we moved and I had to search again. I actually had done research on the net and found this group before I found a doctor who knew about it, and then he was really only familiar with FMF. We did DNA testing to rule out a few other conditions before the MD's settled on .  It is very frustrating and disheartening to see our children go thru this and not be able to help them or even find a professional who seems to be able to. Honestly, without this group I don't know what I would have done (Thanks again to Fran for all the time you have spent keeping it going for us).  Hope this helps you some.  Pruden Tyler Pruden 2yr8mo fevering since 3mo - T & A Aug 5th...waiting Dylan Pruden 5 mo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2008 Report Share Posted August 19, 2008 Hi Whitney,  My son also has fevered every 2 weeks, but only lasting 3 days of fever. Sometimes a day or two more to recover completely. It is extremely difficult when they are that close together. I don't know if the MD told you, but prednisone also brings the episodes closer together. I opted not to use it because of that.  We were referred to a rheumatologist at UC San Francisco's Children's Hospital when our son was about 16 months old. He had been fevering since 3 months, and it was a long road of testing to get to that point. The MD we saw there told us about naproxen and we started him on that. She said for some children it made the fevers stop completely, but I haven't heard of it working that way for anyone on here. It did help the fevers drop from always peaking at 105 -106 to 102-103. For us this made all the difference in the world. The catch is the naproxen had to be in the system before the fever hits. She said if we could predict it well enough to start about 2-3 days before. If not, she said to give it every day twice a day. During fevers stop the Motrin (they are both anti-inflammatories) and supplement with Tylenol inbetween.  He was on naproxen for over a year. I always made sure he had something on his stomach, or mixed it in food.  We just had his tonsils and adenoids removed on the 5th of August. He was due for an episode on the 9th and didn't have one. His next one would be due the 23rd. We are waiting on pins and needles to see if it works for him.  The dark circles and pale skin you mentioned is something many of the children with seem to have in common.  Tyler only had mouth sores that I know of twice. But he may have had them more and not let me know since he was so young. His lymph nodes were swollen often during episodes, and larger with the more severe ones.  Our new pediatrician actually mentioned having a T & A done when Tyler was just turning 2. He said to bring him in when his lymph nodes were swollen. They kept a record of it for insurance records to get the T & A approved.  There was a study posted on here where 26 of the 27 children, who had tonsils with or without adenoids removed, had the fevers stop afterward. I will try to send it to your email, I can't get it to load on the group site. Also there is an article by the MD who participated in the study that was in the Washington Post that is posted here. Search for it at the top of the messages ' study' should bring it up (you may have to look thru a few others to find it I believe it was in June).  Tyler's stomach always seemed to bother him, but they never found anything in all the testing.  We never saw hbg that was abnormal.  I had to change doctors a few times to find one that would listen to me. Then we moved and I had to search again. I actually had done research on the net and found this group before I found a doctor who knew about it, and then he was really only familiar with FMF. We did DNA testing to rule out a few other conditions before the MD's settled on .  It is very frustrating and disheartening to see our children go thru this and not be able to help them or even find a professional who seems to be able to. Honestly, without this group I don't know what I would have done (Thanks again to Fran for all the time you have spent keeping it going for us).  Hope this helps you some.  Pruden Tyler Pruden 2yr8mo fevering since 3mo - T & A Aug 5th...waiting Dylan Pruden 5 mo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2008 Report Share Posted August 30, 2008 Hi Suzi,  I am from Minnetrista MN...near Minnetonka. My son started fevering around 6 months old. He fevered like clockwork until recently...we had a Tonsillectomy and an Adenoidectomy done 2 months ago. He hasn't fevered since . He is now 3 and a half. I waited on the T & A for 2 years. After 2 years of his suffering, endless nights of crying, and 1 febrile seizure...I was desperate for a cure. We got the diagnosis from an Infectious Disease Doctor named Dr. Belani at Children's Hospital (Minneapolis). After a year of trying Singulair we found a wonderful ENT named Dr. Lander. He is with Pediatric ENT Associates of Minneapolis connected to Children's Hospital. Both Dr. Belani and Dr. Lander are very familiar with .  After joining this site and reading all the success stories about kids being cured by a T & A we decided to have Dr. Lander remove the Tonsils and Adenoids. Best decision we ever made. My son has been so happy and healthy since the surgery. If you need any contact information for these Doctors or have any other questions related to ...feel free to ask me.  Hang in there! I know how hard it is to take care of a fevering child! I've lived it for 3 years. This site is a blessing. You will find many supportive/informative parents on here!  Amy- Mom to -age 3.5- T & A 2 months ago-doing great Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2008 Report Share Posted August 30, 2008 Hi Suzi,  I am from Minnetrista MN...near Minnetonka. My son started fevering around 6 months old. He fevered like clockwork until recently...we had a Tonsillectomy and an Adenoidectomy done 2 months ago. He hasn't fevered since . He is now 3 and a half. I waited on the T & A for 2 years. After 2 years of his suffering, endless nights of crying, and 1 febrile seizure...I was desperate for a cure. We got the diagnosis from an Infectious Disease Doctor named Dr. Belani at Children's Hospital (Minneapolis). After a year of trying Singulair we found a wonderful ENT named Dr. Lander. He is with Pediatric ENT Associates of Minneapolis connected to Children's Hospital. Both Dr. Belani and Dr. Lander are very familiar with .  After joining this site and reading all the success stories about kids being cured by a T & A we decided to have Dr. Lander remove the Tonsils and Adenoids. Best decision we ever made. My son has been so happy and healthy since the surgery. If you need any contact information for these Doctors or have any other questions related to ...feel free to ask me.  Hang in there! I know how hard it is to take care of a fevering child! I've lived it for 3 years. This site is a blessing. You will find many supportive/informative parents on here!  Amy- Mom to -age 3.5- T & A 2 months ago-doing great Quote Link to comment Share on other sites More sharing options...
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