Guest guest Posted August 29, 2006 Report Share Posted August 29, 2006 Hi everyone, I was just wondering...I have read that some of your childeren have had their tonsils out...or...planning to have them out sometime in the future. 's ID doctor told me he would take 's out only as a last resort because he really needs to keep them...from my understanding they help filter the bad stuff etc. He also told me...I think it was...70 or 75 percent of the kids who have them taken out...stop fevering. Is that right, does anyone know? Why don't more kids have their tonsils out if it helps so many of them stop getting sick. Especially the children that have been sick for years? Also, has anyone heard of a child that has been fever free for more than 2 or 3 years? We are told that they do finally out grow them, but I haven't heard of anyone who has. One more thing...I would very, very much like to hear from you all about the fact that was 11 years old when he started fevering and he DOES NOT have the typical cycle. He has had 6 fevers, in the past six months...11-75 days apart. He has all the other symptons of though. Most of the kids I've read about started fevering at a much earlier age and have fevers that are much more predictable. I would greatly appreciate any answers. Thanks much, Cheri in CA --- Jane Flanagan-Brown <jbrown@...> wrote: > Hi , We live in San Diego too. We have > probably seen the same > physicians. Dr. Burns ID & Dr. Albani, > Rhuematology. > > a is 8 & had fevered since she was months > old. She was only > recently diagnosed, actually by a chance > conversation between her > primary care & another primary care physician. They > took her tonsils > out, a procedure that the specialist wasn't on-board > with as it seemed > like they wanted to find something odd wrong with > her. They believed > she had HIDs. Her IgD is really high. (I actually > felt he seemed a > little excited at the prospect, as he said he had > never had a patient > with this diagnosis) We did it anyway & have been > fever free since. I > am so glad we didn't listen. > > > > Jane Flanagan-Brown > > Jane Flanagan-Brown > > Contract Manager > > Phone: 619-278-6169 > > Fax: 619-278-6568 > > > > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2006 Report Share Posted August 29, 2006 Cheri You are jumping way ahead of the game here. Your son has had 6 fevers. He has NOT been diagnosed with and he has not gone through the first recommended treatments. He NEEDS to be diagnosed by a physician who knows about PFSs. ESPECIALLY with fever disorders in your family. Tonsil surgery is the THIRD treatment in a child who has had ALL other fever disorders and other disorders which mimik in presentation and symtoms. The rate of success which is NOT considered a cure... it is considered deletion of the fevers similar to the Cimetidine when it works. Other symptoms usually still occur cyclical... such as the mouth sores, adenitis, feelings of malaise and joint and or abdoman pain... It has been said through the well know docs from Vanderbilt and NIH that the success rate is around 27%. NOT higher. There is a doctor here at our site, currently gathering info for a study. The problem with the prior studies is the study did NOT include checking in with the children and family after a year. We have seen dozens of children who have had tonsil surgery fall under one of these situations... Either misdiagnosed and went for surgery too fast.... (no genetics done and not checked for more common disorders such as Chron's, JRA etc) and later refever Secondly we found children who are diagnosed with PFS, with unknown etiology thrown into a category, fever again because they were again misdiagnosed with and later found that they have a Clinical case of a specific fever disorder usually found after their family takes them to the NIH. Lastly the children are diagnosed with probable yet the fevers return down the road. SO... I am trying to stress the IMPORTANCE of PROPER diagnosis. It is great to learn about ALL the treatment methods... However it is more critical to learn about ALL the disorders, and find a doctor who is willing to learn with you... Tonsil surgery has worked wonders for some of our members who swear it is the best treatment. But for the most part it is the third treatment... method ONLY offered for severe cases with the severest symptoms. There is a high incidence of bleeding post op. My son went through tonsil removal at 2. It is rough... for the most part and there is NO guarantee even if the child is said to REALLY have .... First Prednisone... Second Cimetidine and last Tonsil removal. And the last treatment should ONLY be considered AFTER a COMPLETE work up is done by a physician who is VERY familiar with ALL of the fever disorders... and one who UNDERSTANDS that genetics may show a mutation however NOT having a mutation does not clear you from having a genetic disorder. This is quite confusing... to all of us... and it is why so few doctors are as familiar as some of us! Symptoms of are the same as MANY MANY other disorders.... I hope this opens your eyes and the MANY new members here who are trying to understand and other Periodic Fever Syndromes. Fran Fran Bulone RN Mom to ph 7yr Waxhaw NC / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2006 Report Share Posted August 29, 2006 Cheri, My son had his tonsils removed at 2 1/2 years old. His symptoms were greatly reduced for close to 3 years. He fevered maybe 1-2 times a year, and cycled with joint pains maybe every 2-3 months, with the winter months being worse. However, his fevers returned when he started kindergarten last year. We are now part of the NIH study. And - my daughter has been diagnosed also - she started when she was 7 years old - my son had his first fever at one month old. It is all so hard to understand. Prayers to everyone, Tara Connecticut Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2006 Report Share Posted August 29, 2006 Hi Tara, Thank you for your reply. You are the first person I have heard about that has another child with a fever disorder. What were your children diagnosised with? What kind of joint pain does your son have? sometimes gets pain in his ankles and legs. His last episode (mid Aug.) At the beginning of his episode he said his upper thiegh hurt. I'm really starting to quetion if has . Cheri --- Tara <gottiert@...> wrote: > Cheri, > > My son had his tonsils removed at 2 1/2 years old. > His symptoms were > greatly reduced for close to 3 years. He fevered > maybe 1-2 times a > year, and cycled with joint pains maybe every 2-3 > months, with the > winter months being worse. However, his fevers > returned when he > started kindergarten last year. We are now part of > the NIH study. > And - my daughter has been diagnosed also - she > started when she was 7 > years old - my son had his first fever at one month > old. > It is all so hard to understand. > Prayers to everyone, > Tara > Connecticut > > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2006 Report Share Posted August 29, 2006 Fran, First off...I want to thank you for your wealth of information. Second...I don't feel I'm jumping way ahead of the game. Because 's diagnosis (by his ID doctor, who seems to be very knowlegable about pfs) is so new to us,and he hasn't been fevering very long...I just have alot of questions. I'm new at all of this. Why do you say has NOT been diagnosed with ? Is it because he hasn't been sick long enough? Now I realize doctors make mistakes all the time, but when I asked his doctor this question...how sure are you that he has , he said... 99.9% sure. Isn't that a diagnoses? It may be a wronge diagnoses, but it is all I got for now. frustrated in CA, Cheri --- Fran Bulone <fbulone@...> wrote: > Cheri > You are jumping way ahead of the game here. > Your son has had 6 fevers. He has NOT been diagnosed > with and he has not gone through the first > recommended treatments. > > He NEEDS to be diagnosed by a physician who knows > about PFSs. > > ESPECIALLY with fever disorders in your family. > > Tonsil surgery is the THIRD treatment in a child who > has had ALL other fever disorders and other > disorders which mimik in presentation and > symtoms. > > The rate of success which is NOT considered a > cure... it is considered deletion of the fevers > similar to the Cimetidine when it works. Other > symptoms usually still occur cyclical... such as the > mouth sores, adenitis, feelings of malaise and joint > and or abdoman pain... > > It has been said through the well know docs from > Vanderbilt and NIH that the success rate is around > 27%. NOT higher. > > There is a doctor here at our site, currently > gathering info for a study. The problem with the > prior studies is the study did NOT include checking > in with the children and family after a year. We > have seen dozens of children who have had tonsil > surgery fall under one of these situations... > Either misdiagnosed and went for surgery too > fast.... (no genetics done and not checked for more > common disorders such as Chron's, JRA etc) and later > refever > Secondly we found children who are diagnosed with > PFS, with unknown etiology thrown into a > category, fever again because they were again > misdiagnosed with and later found that they > have a Clinical case of a specific fever disorder > usually found after their family takes them to the > NIH. > Lastly the children are diagnosed with probable > yet the fevers return down the road. > > SO... I am trying to stress the IMPORTANCE of PROPER > diagnosis. > > It is great to learn about ALL the treatment > methods... > > However it is more critical to learn about ALL the > disorders, and find a doctor who is willing to learn > with you... > > Tonsil surgery has worked wonders for some of our > members who swear it is the best treatment. > But for the most part it is the third treatment... > method ONLY offered for severe cases with the > severest symptoms. > > There is a high incidence of bleeding post op. My > son went through tonsil removal at 2. It is rough... > for the most part and there is NO guarantee even if > the child is said to REALLY have .... > > First Prednisone... Second Cimetidine and last > Tonsil removal. > > And the last treatment should ONLY be considered > AFTER a COMPLETE work up is done by a physician who > is VERY familiar with ALL of the fever disorders... > and one who UNDERSTANDS that genetics may show a > mutation however NOT having a mutation does not > clear you from having a genetic disorder. > > This is quite confusing... to all of us... and it is > why so few doctors are as familiar as some of us! > > Symptoms of are the same as MANY MANY other > disorders.... > > I hope this opens your eyes and the MANY new members > here who are trying to understand and other > Periodic Fever Syndromes. > Fran > Fran Bulone RN > Mom to ph 7yr > Waxhaw NC > / > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2006 Report Share Posted August 29, 2006 Cheri, Hi again When you explained your son's journey you stated he was tested for FMF if I recall correctly. Maybe he has been diagnosed correctly... but it seems quite fast... Has he had the genetic studies for HIDs, TRAPS, CIAS1 etc... and has he had the other disorders such as cancer, JRA, chron's, cystic fibrosis etc... and numerous other disorders ruled out already?? Has he had his viral loads checked for the rarer PARVO and Epstein barr etc...? It usually takes a very long journey to diagnose . I understand your doc may be good however he ruled out FMF because he does not have a mutation. Shocking if he knows about fever disorders and the clinical cases diagnosed without a mutation... The docs who are at NIH and others in the US who are very familiar will listen then test then try.... try for instance a course of Colchicine since your Mom has FMF... (Or am I confusing you with another newer member) The diagnosis of and many PFSs, is frustrating, and the reason why we continue to run this group is to try and enlighten parents into realizing that they are their ONLY child's advocate... and for that reason they need to learn about each of these disorders and advocate so their child is NOT mis-diagnosed as MANY MANY of our children here on this LIST have been. Lately doctors are becoming more and more aware of the disorder called and all of a sudden we see NUMEROUS people coming to us with a diagnosis made within months... Many have been misdiagnosed because they have NOT had the appropriate testing and the sad thing is.... FMF, TRAPS, HIDS, NOMID and Muckle Wells and other disorders ALL cause secondary problems which can lead to kidney failure, blindness, and may be crippling if they are NOT monitored and treated correctly... This is why I stress the importance to an accurate diagnosis.... and to following the treatment plan for each disorder as recommended by the authorities who are isolating genes and finding the treatments and researching the medications. God Bless Fran Fran Bulone RN Mom to ph 7yr Waxhaw NC / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2006 Report Share Posted August 29, 2006 My daughter had her tonsils removed 13 months ago at the age of 3 1/2. She's had no symptoms since then. She had been diagnosed with and I had been logging her fevers for almost 2 years. >From: " Tara " <gottiert@...> >Reply- > >Subject: Re: removing tonsils >Date: Tue, 29 Aug 2006 20:54:21 -0000 > >Cheri, > >My son had his tonsils removed at 2 1/2 years old. His symptoms were >greatly reduced for close to 3 years. He fevered maybe 1-2 times a >year, and cycled with joint pains maybe every 2-3 months, with the >winter months being worse. However, his fevers returned when he >started kindergarten last year. We are now part of the NIH study. >And - my daughter has been diagnosed also - she started when she was 7 >years old - my son had his first fever at one month old. >It is all so hard to understand. >Prayers to everyone, >Tara >Connecticut > > > > > > > _________________________________________________________________ Search from any web page with powerful protection. Get the FREE Windows Live Toolbar Today! http://get.live.com/toolbar/overview Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2006 Report Share Posted August 29, 2006 Fran, I hope I'm not being a pest, I just want to get things cleared up. You are remembering correctly about was tested for FMF, also TRAPS, both negitive. You were right...it WAS MY mom who has FMF. I understand that could still have FMF, even though his test was negitive. I'm not sure how his doctor decided on PHAPA. Maybe ruling out FMF and TRAPS and the symptons has had is the reason for the diagnoses. I realize after reading so many of the posts, just how quickly we did get a diagnoses. I know many families dealt with fevers, for years, before getting a diagnoses. So I understand your concern. I feel blessed that has had such good care. I do believe in being a very proactive parent. The first 4 months of being sick, I was told he had a virus, a bacterial infection, strep. throat (many tests proved that to be wronge), mono.(two tests proved neg.), lots and lots and lots of blood work. Tested for every thing his pedi. dr. and two other specialty doctors could think of. Every test came back negitive and normal...except his sed. rate, which was 3 times higher than normal. When my mom reminded us about her testing positive, 6 years ago, for FMF, we thought we had an answer. Even though, 's symptons were very different than hers (except the regular fevers). Anyways, I'm sorry for taking up so much of your time. I know you have a lot of other posts you need to answer. I hope you and the other group members will be patient with me as I struggle to learn how to use my computer. I don't know what to do with the posts after I have read them and so on. My husband is helping me with that. Thanks again for taking time with me, your friend, Cheri --- Fran Bulone <fbulone@...> wrote: > Cheri, > Hi again > When you explained your son's journey you stated he > was tested for FMF if I recall correctly. > Maybe he has been diagnosed correctly... but it > seems quite fast... > > Has he had the genetic studies for HIDs, TRAPS, > CIAS1 etc... and has he had the other disorders such > as cancer, JRA, chron's, cystic fibrosis etc... and > numerous other disorders ruled out already?? Has he > had his viral loads checked for the rarer PARVO and > Epstein barr etc...? > > It usually takes a very long journey to diagnose > . > > I understand your doc may be good however he ruled > out FMF because he does not have a mutation. > Shocking if he knows about fever disorders and the > clinical cases diagnosed without a mutation... The > docs who are at NIH and others in the US who are > very familiar will listen then test then try.... try > for instance a course of Colchicine since your Mom > has FMF... (Or am I confusing you with another newer > member) > > The diagnosis of and many PFSs, is > frustrating, and the reason why we continue to run > this group is to try and enlighten parents into > realizing that they are their ONLY child's > advocate... and for that reason they need to learn > about each of these disorders and advocate so their > child is NOT mis-diagnosed as MANY MANY of our > children here on this LIST have been. > > Lately doctors are becoming more and more aware of > the disorder called and all of a sudden we see > NUMEROUS people coming to us with a diagnosis made > within months... Many have been misdiagnosed because > they have NOT had the appropriate testing and the > sad thing is.... > > FMF, TRAPS, HIDS, NOMID and Muckle Wells and other > disorders ALL cause secondary problems which can > lead to kidney failure, blindness, and may be > crippling if they are NOT monitored and treated > correctly... > > This is why I stress the importance to an accurate > diagnosis.... and to following the treatment plan > for each disorder as recommended by the authorities > who are isolating genes and finding the treatments > and researching the medications. > > God Bless > Fran > Fran Bulone RN > Mom to ph 7yr > Waxhaw NC > / > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2006 Report Share Posted August 30, 2006 After having fever for several years, My daughter had her tonsils removed also. We were told not to do it, it's just a chance, a last resort. Although it is surgery and there can be complications we felt that the monthly fever and pain she was in was well worth the chance not to have fevers anymore. The surgery was a success. Maddie has had one or two fevers since. She has experienced some monthly headaches, mild joint pain but nothing like she had before having her tonsils out. Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2006 Report Share Posted August 30, 2006 <<<<My daughter had her tonsils removed 13 months ago at the age of 3 1/2. She's had no symptoms since then. She had been diagnosed with and I had been logging her fevers for almost 2 years.>>>> - I have a question. Looks like the three main attempts at " fixing " kids are Pred., Cimetide (I get this one confused with the other " C " one), and then a tonsilectomy. But then I read that these just keep the fevers at bay - and you are saying that your daughter has been symptom free since her tonsils were taken? Did she have the joint pain, red throat with white patches, swollen lymps and mouth sores before? Or was she only running fever? Just curious . . .I know that every child and situation is different . . . but now I am wondering if there is hope to getting his fevers and swollen lymphs and red throat and joint pain taken care of in one fell swoop . . . through the meds or as a last resort - a tosilectomy. Also - if anyone else has any info about this I would appreciate knowing it! Hugs to everyone and their babies! Hannah Aidan - 3 - 15 months of fever Sid - 5 - and fever free Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2006 Report Share Posted August 30, 2006 Cheri, Both my children were diagnosed with . As I said before, Evan is 6 now and was diagnosed at 18 months old after fevering for 17 months. He would have febrile seizures and his fevers would rise to 106+. We removed his tonsils at 2 1/2 years old because we had tried the cimetidine(which did not work for him) and he was cycling every 2 weeks with severe tonsil involvement. His joint painn was always in his knees, hands, feet, and sometimes he would complain of back pain - a burning sensation in these places. He would actually take off his socks when the burning occurred. And his hands and feet would always feel like they were on fire. My daughter is now 8 and in July 2005 she started with fevers every month that would go to 104.5. This was so unlike her - she was my healthy one. They would last for 5-6 days. I waited until June 2006 before I finally demanded some bloodwork be taken. Her bloodwork had most of the same markers as Evan's so we took her to Dr Feder in Connecticut. He diagnosed the after going through her history for the past year and recommended that she be seen at NIH also. Dr Feder also said this would be the first case he has seen with siblings. But this is why we are going to NIH - to find answers as to exactly what is happening. It may take a while longer, but I feel that we are on the right track. Hang in there, Tara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2006 Report Share Posted August 31, 2006 We tried Pred, it only made the occurrences closer together, though it did take the fever away until the next episode. My daughter had some throat pain and maybe some joint pain, though she was so young during those episodes, it was hard to know exactly what was hurting. She's had so many strep tests because her throat looked swollen, but they were all negative. I'm a firm believer that in SOME cases, tonsillectomy is a great answer. >From: " hannahls73 " <hannahlsmith@...> >Reply- > >Subject: Re: removing tonsils >Date: Wed, 30 Aug 2006 15:39:07 -0000 > ><<<<My daughter had her tonsils removed 13 months ago at the age of 3 >1/2. >She's had no symptoms since then. She had been diagnosed with >and I >had been logging her fevers for almost 2 years.>>>> > > - I have a question. Looks like the three main attempts >at " fixing " kids are Pred., Cimetide (I get this one confused >with the other " C " one), and then a tonsilectomy. > >But then I read that these just keep the fevers at bay - and you are >saying that your daughter has been symptom free since her tonsils were >taken? Did she have the joint pain, red throat with white patches, >swollen lymps and mouth sores before? Or was she only running fever? > >Just curious . . .I know that every child and situation is >different . . . but now I am wondering if there is hope to getting his >fevers and swollen lymphs and red throat and joint pain taken care of >in one fell swoop . . . through the meds or as a last resort - a >tosilectomy. > >Also - if anyone else has any info about this I would appreciate >knowing it! > > Hugs to everyone and their babies! > >Hannah >Aidan - 3 - 15 months of fever >Sid - 5 - and fever free > > > > > > _________________________________________________________________ Got something to buy, sell or swap? Try Windows Live Expo ttp://clk.atdmt.com/MSN/go/msnnkwex0010000001msn/direct/01/?href=http://expo.liv\ e.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2006 Report Share Posted August 31, 2006 My son had his tonsils out at the age of 5 after a year of fevers. No problems since. My two year old just was diagnosed. They will not remove her tonsils until three. They put her on tagament which seems to be giving us more time between fevers which is usually every 21 days. Sheasgreen <jens.pad@...> wrote: We tried Pred, it only made the occurrences closer together, though it did take the fever away until the next episode. My daughter had some throat pain and maybe some joint pain, though she was so young during those episodes, it was hard to know exactly what was hurting. She's had so many strep tests because her throat looked swollen, but they were all negative. I'm a firm believer that in SOME cases, tonsillectomy is a great answer. >From: " hannahls73 " <hannahlsmith@...> >Reply- > >Subject: Re: removing tonsils >Date: Wed, 30 Aug 2006 15:39:07 -0000 > ><<<<My daughter had her tonsils removed 13 months ago at the age of 3 >1/2. >She's had no symptoms since then. She had been diagnosed with >and I >had been logging her fevers for almost 2 years.>>>> > > - I have a question. Looks like the three main attempts >at " fixing " kids are Pred., Cimetide (I get this one confused >with the other " C " one), and then a tonsilectomy. > >But then I read that these just keep the fevers at bay - and you are >saying that your daughter has been symptom free since her tonsils were >taken? Did she have the joint pain, red throat with white patches, >swollen lymps and mouth sores before? Or was she only running fever? > >Just curious . . .I know that every child and situation is >different . . . but now I am wondering if there is hope to getting his >fevers and swollen lymphs and red throat and joint pain taken care of >in one fell swoop . . . through the meds or as a last resort - a >tosilectomy. > >Also - if anyone else has any info about this I would appreciate >knowing it! > > Hugs to everyone and their babies! > >Hannah >Aidan - 3 - 15 months of fever >Sid - 5 - and fever free > > > > > > __________________________________________________________ Got something to buy, sell or swap? Try Windows Live Expo ttp://clk.atdmt.com/MSN/go/msnnkwex0010000001msn/direct/01/?href=http://expo.liv\ e.com/ --------------------------------- Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2010 Report Share Posted December 15, 2010 I'm wondering if I need to do that.... Pretty major surgery in an adult though... Not totally sure that's where the strep is, either. Could be in my teeth, in my mitral valve... Don't feel like taking those out, either. But what if... ________________________________ From: and Marcia Hinds <hindssite@...> golivo@...; Sent: Wed, December 15, 2010 5:23:33 AM Subject: Removing tonsils  Argie, We had 's tonsils taken out in first grade. Dr G was against it because it is a big operation. But for it was a huge gain to his immune system. We both constantly had strep that didn't go away with antibiotics before that. Best, Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2010 Report Share Posted December 15, 2010 I would like to add, my girl had a terrific winter last year, i was used to give her homeopathic medicines, but dr. Goldberg asked to add Claritine 10mg every night. It was really a big difference, at the end of the 1st month with Claritine she was so good, if she get a Flu it takes only 5 or 6 days, and she goes out of that very easily. Dr. G didn´t like her to be sick for 1 month, he told me that this hits so much her immune system and Claritine was much better that any other choice. > > Argie, > > We had 's tonsils taken out in first grade. Dr G was against it because > it is a big operation. But for it was a huge gain to his immune > system. We both constantly had strep that didn't go away with antibiotics > before that. > > Best, > > Marcia > > > > Quote Link to comment Share on other sites More sharing options...
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