Guest guest Posted January 17, 2008 Report Share Posted January 17, 2008 I have heard a lot about Dr Feder and I was hoping to have my child seen by him We are in RI and there are no specialist in the area of Fever syndromes If you have any info you could pass on I would really appreciate it My son has had fevers since he was 9 months and now he is 4 and the prendisone is working most of the time I just want to have my son see a Doctor that knows about what he has Sometimes I feel I am more knowledgeable in this area than some of the doctors we have seen Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2008 Report Share Posted January 19, 2008 He is definitely worth the trip if you can see him. He seems to really care about the patient as well as the research. He asks a lot of questions and listens to our concerns, plus our daughter likes him. He is at CCMC in Hartford. Let me know if you need his contact info. Good luck to you! Hope you get the info. you need. Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2008 Report Share Posted January 19, 2008 He is definitely worth the trip if you can see him. He seems to really care about the patient as well as the research. He asks a lot of questions and listens to our concerns, plus our daughter likes him. He is at CCMC in Hartford. Let me know if you need his contact info. Good luck to you! Hope you get the info. you need. Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2008 Report Share Posted January 19, 2008 Hi Amy, My name is Marice and my daughter started when she was18 mo. Her fevers stopped when she turned 8. Now she is 13 and we are just starting over again. We live in NJ but we see an ID doc in NYC. Our doc told us that it lasts about 6 years but not to shocked if it should come back as a teen. We are just doing the advil/tylenol and pred. Our pred dose is now a single dose. We did do it for the 5 days before. We just take it one episode at a time. Besides the fevers, she is a pretty typical teen with drama. Marice(13) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2008 Report Share Posted January 19, 2008 Hi Amy, My name is Marice and my daughter started when she was18 mo. Her fevers stopped when she turned 8. Now she is 13 and we are just starting over again. We live in NJ but we see an ID doc in NYC. Our doc told us that it lasts about 6 years but not to shocked if it should come back as a teen. We are just doing the advil/tylenol and pred. Our pred dose is now a single dose. We did do it for the 5 days before. We just take it one episode at a time. Besides the fevers, she is a pretty typical teen with drama. Marice(13) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2008 Report Share Posted February 5, 2008 Hi Amy - So glad for your daughter and you! Dr. Feder told us the same thing. Hope she stays fever free. Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 The doctors have told us that our grand-daughter will outgrow by the time she is around 6 yrs old. But from what I have been reading I'm not so sure. Any help with this topic? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2009 Report Share Posted March 11, 2009 We were told the same thing about Teagan and reading the posts can be discouraging for having them out grow it. If both of our doctors say they will out grow it, I tend to think they will and that many of the people that post are not the " typical " case. If their child out grew it, chances are they would not longer be on this group so we don't always get to hear the success stories. I know we will have to consider the T & A if she doesn't even though our doctors are not in favor of it. Good luck. Teagan's has gone from every 3 weeks to every 5 now. Stacey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 I am 50 and suffered with for 23 years. I had my tonsils removed age 7, which slowed the fever frequency down for 10 years, but came it back every 7 weeks starting age 17. Which has now been stopped by permanent antibiotic treatment. Both my children have it. I was told for 10 years by our 'specialist' that they would 'hopefully grow out of it'. Even though he knew that wasnt my experience. My daughter , now 21 hasnt grown out of it at all, and has suffered 100 fever attacks throughout her life. She had her tonsils removed dec 2008. She has not had an attack since that... so far. My son Darren did indeed seem to grow out of it age 13 and was fever free for 5 years. Now 18 it has come back and he has had 3 fever attacks 8 weeks apart. I am just arranging his tonsilectomy. We are no longer seeing any specialists. We tried for 10 years but still not cured. I am managing myself and arranging tonsillectomys via my own family doctor. I take the general antibiotic 'oxytetracycline' every day, and have done for 27 years. This for me has stopped the fever attacks permanently. took it for 18 months but it didnt work for her. The only difference between us, is I have no tonsils. has now had them removed. Its been 3 months, no fever attacks so far. If the fevers start again, she will try the antibiotic treatment once again to see if it works this time. Darren is going to try the same thing. If this doesnt work, we are going to have to live with it. Once a cure is found, hopefully I will read about it on here! Best Wishes to everyone suffering with this. Lee 50 father to 21 and Darren 18 all with England - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 My daugther appears to have outgrown this right around the age of 5. However, she had what seemed to be a fairly low-key version of . She got the mouth sores (though only AFTER her episodes) and the fevers but nothing else. Once she had Motrin in her and her fever was down, she acted as though nothing was the matter - until the fever returned six hours later. She was actually sick with something three weeks ago. It was the first time she was truly ill with what others in the family had in her whole life. She was confused and kept saying she didn't feel good with this look on her face as if to say " what on earth is going ON? " . So yes, it is possible to outgrow it, but I know that this is not what many people experience with their child. I also know that some people have seen the fevers stop at five or six years old, only to return again around the onset of puberty. I hope this helps. Michele Mom to (16), Abigail (13) and (6 - outgrown ?) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2009 Report Share Posted March 13, 2009 HI Mi pediatrician happens to speciailize in ID..Because of my son michael, he has been paying " closer attention " to the discussions at medical conferences. He went to a conference in October and learned that a study is being done regarding in that, they are now looking at 2 differnet types of ; one that stops around 5 or 6 and the other goes on into adolescence and adulthood. Which would make sense after reading all the posts on this board. I will def. post if I hear anything else!! Olga Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2009 Report Share Posted March 13, 2009 HI Mi pediatrician happens to speciailize in ID..Because of my son michael, he has been paying " closer attention " to the discussions at medical conferences. He went to a conference in October and learned that a study is being done regarding in that, they are now looking at 2 differnet types of ; one that stops around 5 or 6 and the other goes on into adolescence and adulthood. Which would make sense after reading all the posts on this board. I will def. post if I hear anything else!! Olga Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2009 Report Share Posted March 16, 2009 Olga--where do you live? I would love it if my pediatrician had some (any ) knowledge about this. By the way does anyone live in the Bay Area (Northern California)? If so, could you recommend a Pediatrician? I live in San Ramon. thanks Quote Link to comment Share on other sites More sharing options...
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