Guest guest Posted July 21, 2006 Report Share Posted July 21, 2006 Hi, TRAPS is treated with Prednisone however it is also treated with Enbrel. Enbrel is supposed to really assist with the secondary diseases which occur with this genetic disorder. You will find this out next visit I am sure. Also there is a TRAPs group Charyn Levy started after her son was diagnosed. You will find the group informative as they deal primarily with TRAPs and HIDs. To join go to TRAPS-HIDS-GeneticFeverSyndromeSupportG roup/ It is a much smaller group but very informative. God Bless Fran Fran A Bulone Mom to ph 7 yrs old Waxhaw, NC Owner & Moderator Group <> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2006 Report Share Posted July 27, 2006 Hi Fran, You seem like one of the persons to ask... My son Josh, 7 1/2 in San Diego has not been diagnosed with anything. We've been charting for over 4 yrs now and have ruled out most everything that I have seen on your site (we are going to verify at next apt in 2 wks...I have a list). Our ID wants to start him on Colchicine, which it seems a lot of your parents are seeing some side effects (constipation? if it's the one I thought). But it seems that he is not willing to call it but " thinks " this will help. We also just saw an ENT Specialists for a Tonsillectomy and they are NOT willing to do it, I really want to fight them because again, they are looking at his tonsils (on a good day) without knowing anything about FUO. I would like to suggest to our Dr. Cimitidine or Prednisone, but I read that you told someone that Pred only works with some fevers. What do you think? My doctors are great but I feel like they are shooting in the dark with this prescription, I need to know what to say to them. Thanks, RE: TRAPS Hi, TRAPS is treated with Prednisone however it is also treated with Enbrel. Enbrel is supposed to really assist with the secondary diseases which occur with this genetic disorder. You will find this out next visit I am sure. Also there is a TRAPs group Charyn Levy started after her son was diagnosed. You will find the group informative as they deal primarily with TRAPs and HIDs. To join go to TRAPS-HIDS-GeneticFeverSyndromeSupportG roup/ It is a much smaller group but very informative. God Bless Fran Fran A Bulone Mom to ph 7 yrs old Waxhaw, NC Owner & Moderator Group <> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2006 Report Share Posted July 27, 2006 Hi, Colchicine is generally prescibed for FMF, and to my knowledge only works on children who are diagnosed gentically or clinically with FMF. Usually if a child does not have a positive genetic mutation for FMF, bur responds well to colchicine they will give the clinical FMF diagnosis if the other symptoms also seem to merit it. Have you applied for the NIH study? Good luck to you and your family, & <bgatesjr@...> wrote: Hi Fran, You seem like one of the persons to ask... My son Josh, 7 1/2 in San Diego has not been diagnosed with anything. We've been charting for over 4 yrs now and have ruled out most everything that I have seen on your site (we are going to verify at next apt in 2 wks...I have a list). Our ID wants to start him on Colchicine, which it seems a lot of your parents are seeing some side effects (constipation? if it's the one I thought). But it seems that he is not willing to call it but " thinks " this will help. We also just saw an ENT Specialists for a Tonsillectomy and they are NOT willing to do it, I really want to fight them because again, they are looking at his tonsils (on a good day) without knowing anything about FUO. I would like to suggest to our Dr. Cimitidine or Prednisone, but I read that you told someone that Pred only works with some fevers. What do you think? My doctors are great but I feel like they are shooting in the dark with this prescription, I need to know what to say to them. Thanks, RE: TRAPS Hi, TRAPS is treated with Prednisone however it is also treated with Enbrel. Enbrel is supposed to really assist with the secondary diseases which occur with this genetic disorder. You will find this out next visit I am sure. Also there is a TRAPs group Charyn Levy started after her son was diagnosed. You will find the group informative as they deal primarily with TRAPs and HIDs. To join go to TRAPS-HIDS-GeneticFeverSyndromeSupportG roup/ It is a much smaller group but very informative. God Bless Fran Fran A Bulone Mom to ph 7 yrs old Waxhaw, NC Owner & Moderator Group <> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2006 Report Share Posted July 28, 2006 Hey all! Everything said about the Colchicine is true. I just wanted to add that initially upon starting Colchicine, you most likely WILL see belly aches and diarrhea increase. Those are just side effects of the drug but they usually resolve within a week or two of starting the medication. My son also experienced these symptoms every time he had a dose increase but they only last a few days. Some kids, like Lori's son Nino, either can't tolerate the Colchicine or it has no effect, even with a diagnosis of clinical FMF. These are pretty rare instances but I've read that even if it has no effect, a person diagnosed with FMF needs to continue to take it for life as it keeps a potentially fatal complication called amyloidosis from either arising or progressing, in FMF patients. Pat, mom to PJ, 13yo. FMF --------------------------------- Music Unlimited - Access over 1 million songs.Try it free. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2006 Report Share Posted July 28, 2006 Colchicine is used for FMF patients. In our case, our son presented from the beginning as FMF, and still does...However, had a very negative response to Colchicine. There are so many mutations being identified and new PFS's being labeled, it's just incredible and overwhelmong all at the same time. Good luck to you and your family. Lori --- Burger <hiesersmom@...> wrote: > Hi, > > Colchicine is generally prescibed for FMF, and to > my knowledge only works on children who are > diagnosed gentically or clinically with FMF. > Usually if a child does not have a positive genetic > mutation for FMF, bur responds well to colchicine > they will give the clinical FMF diagnosis if the > other symptoms also seem to merit it. Have you > applied for the NIH study? > > Good luck to you and your family, > > > > & <bgatesjr@...> wrote: > Hi Fran, You seem like one of the persons > to ask... > My son Josh, 7 1/2 in San Diego has not been > diagnosed with anything. We've been charting for > over 4 yrs now and have ruled out most everything > that I have seen on your site (we are going to > verify at next apt in 2 wks...I have a list). Our ID > wants to start him on Colchicine, which it seems a > lot of your parents are seeing some side effects > (constipation? if it's the one I thought). But it > seems that he is not willing to call it but > " thinks " this will help. We also just saw an ENT > Specialists for a Tonsillectomy and they are NOT > willing to do it, I really want to fight them > because again, they are looking at his tonsils (on a > good day) without knowing anything about FUO. I > would like to suggest to our Dr. Cimitidine or > Prednisone, but I read that you told someone that > Pred only works with some fevers. What do you think? > My doctors are great but I feel like they are > shooting in the dark with this prescription, I need > to know what to say to them. > Thanks, > RE: TRAPS > > Hi, > > TRAPS is treated with Prednisone however it is also > treated with Enbrel. > Enbrel is supposed to really assist with the > secondary diseases which occur > with this genetic disorder. > > You will find this out next visit I am sure. > > Also there is a TRAPs group Charyn Levy started > after her son was diagnosed. > You will find the group informative as they deal > primarily with TRAPs and > HIDs. > > To join go to > TRAPS-HIDS-GeneticFeverSyndromeSupportG > roup/ > > It is a much smaller group but very informative. > > God Bless > > Fran > > Fran A Bulone > Mom to ph 7 yrs old > Waxhaw, NC > > Owner & Moderator Group > <> > > > [Non-text portions of this message have been > removed] > > [Non-text portions of this message have been > removed] > > > > > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2006 Report Share Posted July 28, 2006 Thanks, FMF has already been ruled out, the DNA went to UCLA and 12 different mutations were negative. I have not researched NIH thoroughly and don't know if I want to take Josh out of school to participate in the study, especially when our doctors here really are doing a lot. I probably need to investigate... Thanks for the info. RE: TRAPS Hi, TRAPS is treated with Prednisone however it is also treated with Enbrel. Enbrel is supposed to really assist with the secondary diseases which occur with this genetic disorder. You will find this out next visit I am sure. Also there is a TRAPs group Charyn Levy started after her son was diagnosed. You will find the group informative as they deal primarily with TRAPs and HIDs. To join go to TRAPS-HIDS-GeneticFeverSyndromeSupportG roup/ It is a much smaller group but very informative. God Bless Fran Fran A Bulone Mom to ph 7 yrs old Waxhaw, NC Owner & Moderator Group <> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2006 Report Share Posted July 29, 2006 Hi , I am glad that you have found some good doctors at UCSF. I just wanted to remind you that the genetic testing for FMF is about 80% accurate. The mutations for FMF were only first discovered in the late 90s which is why this is such an exciting field right now. The doctors at NIH are continuing to find new mutations. This is why some people are diagonsed with clinical FMF. They came back negative for the known current mutations, but still present as FMF. There is a girl at my current ID doc who tested negative but responds well to the colchicine. It sounds like you and your son have been dealing with this for so long now. If you think there is a chance the colchicine will work and the doctors agree it is worth a try. & <bgatesjr@...> wrote: Thanks, FMF has already been ruled out, the DNA went to UCLA and 12 different mutations were negative. I have not researched NIH thoroughly and don't know if I want to take Josh out of school to participate in the study, especially when our doctors here really are doing a lot. I probably need to investigate... Thanks for the info. RE: TRAPS Hi, TRAPS is treated with Prednisone however it is also treated with Enbrel. Enbrel is supposed to really assist with the secondary diseases which occur with this genetic disorder. You will find this out next visit I am sure. Also there is a TRAPs group Charyn Levy started after her son was diagnosed. You will find the group informative as they deal primarily with TRAPs and HIDs. To join go to TRAPS-HIDS-GeneticFeverSyndromeSupportG roup/ It is a much smaller group but very informative. God Bless Fran Fran A Bulone Mom to ph 7 yrs old Waxhaw, NC Owner & Moderator Group <> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2006 Report Share Posted July 29, 2006 Thanks , Our ID (who is from UCSD) really thought he had FMF and is pretty confident that it is not. That is why I was questioning why he wants to prescribe Colchicine. I really wanted to know if trying Cimitidine or Prednisone first is worth it. Seems that the side effects are more mild and with him starting school soon again it might be easier on him. What do you think? RE: TRAPS Hi, TRAPS is treated with Prednisone however it is also treated with Enbrel. Enbrel is supposed to really assist with the secondary diseases which occur with this genetic disorder. You will find this out next visit I am sure. Also there is a TRAPs group Charyn Levy started after her son was diagnosed. You will find the group informative as they deal primarily with TRAPs and HIDs. To join go to TRAPS-HIDS-GeneticFeverSyndromeSupportG roup/ It is a much smaller group but very informative. God Bless Fran Fran A Bulone Mom to ph 7 yrs old Waxhaw, NC Owner & Moderator Group <> Quote Link to comment Share on other sites More sharing options...
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