Guest guest Posted February 3, 2007 Report Share Posted February 3, 2007 My name is Lichty and I recently joined this group to gain information on and get support from people that are also facing this difficult prognosis in their children. My daughter Madison was diagnosed with at six months old. She started getting unknown periodic fevers at three months old. We were told by her pediatrician that they were viral and to just let it run its course. After the third episode, the pediatrician was stumped and referred us to an Infectious Disease doctor. Three months later we got the diagnosis. At eight months we started giving her Prednisolone. She went from having fevers every 24 days to having them every 10 to 14 days. My husband and I feel helpless that our little girl has to go through this and there is nothing else we can do. I would appreciate any advice. Sincerely, Lichty ________________________________________________________________________________\ ____ Need a quick answer? Get one in minutes from people who know. Ask your question on www.Answers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2007 Report Share Posted February 4, 2007 , I know it feels hard and horrible, but you are among the lucky. Many of us, myself included did not get a diagnosis for years. I have a nine year old, and it took almost 5 years and many many infectious disease specialists to figure out what is wrong with her. It has only been 4 months that my daughter has had any relief and that's because she has been taking Cimetidine. (I refused steroids). So I truly feel for you, for we have all been there, but be happy that you at least know. Just make sure as Fran always says that you rule out other genetic mutations. Good luck you have found a great group here. I know that I count my lucky stars. Azzie, Mom to Kianna 9 , Rustin 6, Bella 5 mo. From: [mailto: ] On Behalf Of Creamer Sent: Saturday, February 03, 2007 1:28 PM Subject: New member to group My name is Lichty and I recently joined this group to gain information on and get support from people that are also facing this difficult prognosis in their children. My daughter Madison was diagnosed with at six months old. She started getting unknown periodic fevers at three months old. We were told by her pediatrician that they were viral and to just let it run its course. After the third episode, the pediatrician was stumped and referred us to an Infectious Disease doctor. Three months later we got the diagnosis. At eight months we started giving her Prednisolone. She went from having fevers every 24 days to having them every 10 to 14 days. My husband and I feel helpless that our little girl has to go through this and there is nothing else we can do. I would appreciate any advice. Sincerely, Lichty __________________________________________________________ Need a quick answer? Get one in minutes from people who know. Ask your question on www.Answers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2007 Report Share Posted February 4, 2007 , can you explain Cimetidine and why it works? Our doctors only recommended Prednisone. And do you know the risks associated with this med. Thanks so much. Kim Azzie Fiouzi <azzief@...> wrote: , I know it feels hard and horrible, but you are among the lucky. Many of us, myself included did not get a diagnosis for years. I have a nine year old, and it took almost 5 years and many many infectious disease specialists to figure out what is wrong with her. It has only been 4 months that my daughter has had any relief and that's because she has been taking Cimetidine. (I refused steroids). So I truly feel for you, for we have all been there, but be happy that you at least know. Just make sure as Fran always says that you rule out other genetic mutations. Good luck you have found a great group here. I know that I count my lucky stars. Azzie, Mom to Kianna 9 , Rustin 6, Bella 5 mo. From: [mailto: ] On Behalf Of Creamer Sent: Saturday, February 03, 2007 1:28 PM Subject: New member to group My name is Lichty and I recently joined this group to gain information on and get support from people that are also facing this difficult prognosis in their children. My daughter Madison was diagnosed with at six months old. She started getting unknown periodic fevers at three months old. We were told by her pediatrician that they were viral and to just let it run its course. After the third episode, the pediatrician was stumped and referred us to an Infectious Disease doctor. Three months later we got the diagnosis. At eight months we started giving her Prednisolone. She went from having fevers every 24 days to having them every 10 to 14 days. My husband and I feel helpless that our little girl has to go through this and there is nothing else we can do. I would appreciate any advice. Sincerely, Lichty __________________________________________________________ Need a quick answer? Get one in minutes from people who know. Ask your question on www.Answers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2007 Report Share Posted February 4, 2007 Azzie, I'm sorry to here that it took so long to get a diagnosis for your daughter. I do feel lucky that we have not had severe symptoms but I do wonder if we are on the right path for her diagnosis. I know the ID doctor did some other testing but now that I have specific info from this group, I can make sure the right tests were done. How long has your daughter had symptoms? The ID doctor we saw said my daughter should out grow them by four or five, now I'm wondering if that is true. Thanks for your advice. Madison 10 months --- Azzie Fiouzi <azzief@...> wrote: > , > > I know it feels hard and horrible, but you are among > the lucky. Many of us, > myself included did not get a diagnosis for years. > I have a nine year old, > and it took almost 5 years and many many infectious > disease specialists to > figure out what is wrong with her. It has only been > 4 months that my > daughter has had any relief and that's because she > has been taking > Cimetidine. (I refused steroids). So I truly feel > for you, for we have all > been there, but be happy that you at least know. > Just make sure as Fran > always says that you rule out other genetic > mutations. Good luck you have > found a great group here. I know that I count my > lucky stars. > > Azzie, > > Mom to Kianna 9 , Rustin 6, Bella 5 mo. > > > > > > From: > [mailto: ] On Behalf Of > Creamer > Sent: Saturday, February 03, 2007 1:28 PM > > Subject: New member to group > > > > My name is Lichty and I recently joined > this > group to gain information on and get > support from people that are also facing this > difficult prognosis in their children. My daughter > Madison was diagnosed with at six months old. > She started getting unknown periodic fevers at three > months old. We were told by her pediatrician that > they were viral and to just let it run its course. > After the third episode, the pediatrician was > stumped > and referred us to an Infectious Disease doctor. > Three months later we got the diagnosis. At eight > months we started giving her Prednisolone. She went > from having fevers every 24 days to having them > every > 10 to 14 days. My husband and I feel helpless that > our little girl has to go through this and there is > nothing else we can do. I would appreciate any > advice. > > Sincerely, > Lichty > > __________________________________________________________ > Need a quick answer? Get one in minutes from people > who know. > Ask your question on www.Answers. > > > > > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ Have a burning question? Go to www.Answers. and get answers from real people who know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2007 Report Share Posted February 4, 2007 Kim, I think Azzie's daughter is one Cimetidine. Our doctor has never suggested. I also am wondering the details about it so if anyone could fill us in it would be appreciated. Thanks, --- Kimberli Cowman <kimc2819@...> wrote: > , can you explain Cimetidine and why it > works? Our doctors only recommended Prednisone. And > do you know the risks associated with this med. > Thanks so much. Kim > > Azzie Fiouzi <azzief@...> wrote: > , > > I know it feels hard and horrible, but you are among > the lucky. Many of us, > myself included did not get a diagnosis for years. I > have a nine year old, > and it took almost 5 years and many many infectious > disease specialists to > figure out what is wrong with her. It has only been > 4 months that my > daughter has had any relief and that's because she > has been taking > Cimetidine. (I refused steroids). So I truly feel > for you, for we have all > been there, but be happy that you at least know. > Just make sure as Fran > always says that you rule out other genetic > mutations. Good luck you have > found a great group here. I know that I count my > lucky stars. > > Azzie, > > Mom to Kianna 9 , Rustin 6, Bella 5 mo. > > From: > [mailto: ] On Behalf Of > Creamer > Sent: Saturday, February 03, 2007 1:28 PM > > Subject: New member to group > > My name is Lichty and I recently joined > this > group to gain information on and get > support from people that are also facing this > difficult prognosis in their children. My daughter > Madison was diagnosed with at six months old. > She started getting unknown periodic fevers at three > months old. We were told by her pediatrician that > they were viral and to just let it run its course. > After the third episode, the pediatrician was > stumped > and referred us to an Infectious Disease doctor. > Three months later we got the diagnosis. At eight > months we started giving her Prednisolone. She went > from having fevers every 24 days to having them > every > 10 to 14 days. My husband and I feel helpless that > our little girl has to go through this and there is > nothing else we can do. I would appreciate any > advice. > > Sincerely, > Lichty > > __________________________________________________________ > Need a quick answer? Get one in minutes from people > who know. > Ask your question on www.Answers. > > [Non-text portions of this message have been > removed] > > > > > > > --------------------------------- > Finding fabulous fares is fun. > Let FareChase search your favorite travel > sites to find flight and hotel bargains. > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ Need a quick answer? Get one in minutes from people who know. Ask your question on www.Answers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2007 Report Share Posted February 5, 2007 , My daughter had her first cycle at 10 months, we were on vacation in Hawaii, and thought she had heat exhaustion! Her next one came on her first birthday and then like clockwork every 4 -6 weeks! And hers last a week and go as high as 105! My pediatrician was the first suspect , but to make sure he sent us to an ID. The first ID was brutal to my daughter we were there for nearly 4 hours. They did not call it ! They said she didn't fit the pattern, which she does, the second ID thought she may have FMF, but her tests came back negative, so they just said she had cyclical fevers and wanted to put her on prednisone, I did not allow it, (my stupidity) because my friends daughter was on steroids for her asthma and had swollen up like a balloon and it scared me. It wasn't until this last July that we went to our last ID doctor, and they put her on Cimetidine, (with the dosage coming from Fran, they were way off!) They have also ruled out almost everything under the sun! Until this last Sunday my daughter had not cycled in 6 months. I have been hoping and praying that she outgrows it, but other than this 6 month relief, ... So we are giving the Cimetidine until june, (11 mo) and then if we see the patterns repeating we will take out her tonsils, she has missed so much school that she is really struggling and we just can't see her doing it much longer. My pediatrician is VERY much against a tonsillectomy. This is why we have waited this long. This doesn't mean that your daughter will not outgrow it, it just means that ours hasn't! Hopefully that helps. Azzie From: [mailto: ] On Behalf Of Creamer Sent: Sunday, February 04, 2007 5:07 PM Subject: RE: New member to group Azzie, I'm sorry to here that it took so long to get a diagnosis for your daughter. I do feel lucky that we have not had severe symptoms but I do wonder if we are on the right path for her diagnosis. I know the ID doctor did some other testing but now that I have specific info from this group, I can make sure the right tests were done. How long has your daughter had symptoms? The ID doctor we saw said my daughter should out grow them by four or five, now I'm wondering if that is true. Thanks for your advice. Madison 10 months --- Azzie Fiouzi <azzief@... <mailto:azzief%40sbcglobal.net> > wrote: > , > > I know it feels hard and horrible, but you are among > the lucky. Many of us, > myself included did not get a diagnosis for years. > I have a nine year old, > and it took almost 5 years and many many infectious > disease specialists to > figure out what is wrong with her. It has only been > 4 months that my > daughter has had any relief and that's because she > has been taking > Cimetidine. (I refused steroids). So I truly feel > for you, for we have all > been there, but be happy that you at least know. > Just make sure as Fran > always says that you rule out other genetic > mutations. Good luck you have > found a great group here. I know that I count my > lucky stars. > > Azzie, > > Mom to Kianna 9 , Rustin 6, Bella 5 mo. > > > > > > From: <mailto:%40> > [mailto: <mailto:%40> ] On Behalf Of > Creamer > Sent: Saturday, February 03, 2007 1:28 PM > <mailto:%40> > Subject: New member to group > > > > My name is Lichty and I recently joined > this > group to gain information on and get > support from people that are also facing this > difficult prognosis in their children. My daughter > Madison was diagnosed with at six months old. > She started getting unknown periodic fevers at three > months old. We were told by her pediatrician that > they were viral and to just let it run its course. > After the third episode, the pediatrician was > stumped > and referred us to an Infectious Disease doctor. > Three months later we got the diagnosis. At eight > months we started giving her Prednisolone. She went > from having fevers every 24 days to having them > every > 10 to 14 days. My husband and I feel helpless that > our little girl has to go through this and there is > nothing else we can do. I would appreciate any > advice. > > Sincerely, > Lichty > > __________________________________________________________ > Need a quick answer? Get one in minutes from people > who know. > Ask your question on www.Answers. > > > > > > [Non-text portions of this message have been > removed] > > __________________________________________________________ Have a burning question? Go to www.Answers. and get answers from real people who know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2007 Report Share Posted February 5, 2007 My daughter started a regular cycle at 4. She was always sick a lot younger than that, but we never noticed a pattern. She was diagnosed a year ago at 51/2 - she is now 6 1/2 and no sign that its stopping yet. (just hopeful thinking) Trish --------------------------------- Never miss an email again! Toolbar alerts you the instant new Mail arrives. Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2007 Report Share Posted February 6, 2007 I was curious as to why the Dr. is so against tonsillectomy? My son had his removed and I was wondering why the Dr. would be against it. Thank you Azzie Fiouzi <azzief@...> wrote: , My daughter had her first cycle at 10 months, we were on vacation in Hawaii, and thought she had heat exhaustion! Her next one came on her first birthday and then like clockwork every 4 -6 weeks! And hers last a week and go as high as 105! My pediatrician was the first suspect , but to make sure he sent us to an ID. The first ID was brutal to my daughter we were there for nearly 4 hours. They did not call it ! They said she didn't fit the pattern, which she does, the second ID thought she may have FMF, but her tests came back negative, so they just said she had cyclical fevers and wanted to put her on prednisone, I did not allow it, (my stupidity) because my friends daughter was on steroids for her asthma and had swollen up like a balloon and it scared me. It wasn't until this last July that we went to our last ID doctor, and they put her on Cimetidine, (with the dosage coming from Fran, they were way off!) They have also ruled out almost everything under the sun! Until this last Sunday my daughter had not cycled in 6 months. I have been hoping and praying that she outgrows it, but other than this 6 month relief, ... So we are giving the Cimetidine until june, (11 mo) and then if we see the patterns repeating we will take out her tonsils, she has missed so much school that she is really struggling and we just can't see her doing it much longer. My pediatrician is VERY much against a tonsillectomy. This is why we have waited this long. This doesn't mean that your daughter will not outgrow it, it just means that ours hasn't! Hopefully that helps. Azzie From: [mailto: ] On Behalf Of Creamer Sent: Sunday, February 04, 2007 5:07 PM Subject: RE: New member to group Azzie, I'm sorry to here that it took so long to get a diagnosis for your daughter. I do feel lucky that we have not had severe symptoms but I do wonder if we are on the right path for her diagnosis. I know the ID doctor did some other testing but now that I have specific info from this group, I can make sure the right tests were done. How long has your daughter had symptoms? The ID doctor we saw said my daughter should out grow them by four or five, now I'm wondering if that is true. Thanks for your advice. Madison 10 months --- Azzie Fiouzi <azzief@... <mailto:azzief%40sbcglobal.net> > wrote: > , > > I know it feels hard and horrible, but you are among > the lucky. Many of us, > myself included did not get a diagnosis for years. > I have a nine year old, > and it took almost 5 years and many many infectious > disease specialists to > figure out what is wrong with her. It has only been > 4 months that my > daughter has had any relief and that's because she > has been taking > Cimetidine. (I refused steroids). So I truly feel > for you, for we have all > been there, but be happy that you at least know. > Just make sure as Fran > always says that you rule out other genetic > mutations. Good luck you have > found a great group here. I know that I count my > lucky stars. > > Azzie, > > Mom to Kianna 9 , Rustin 6, Bella 5 mo. > > > > > > From: <mailto:%40> > [mailto: <mailto:%40> ] On Behalf Of > Creamer > Sent: Saturday, February 03, 2007 1:28 PM > <mailto:%40> > Subject: New member to group > > > > My name is Lichty and I recently joined > this > group to gain information on and get > support from people that are also facing this > difficult prognosis in their children. My daughter > Madison was diagnosed with at six months old. > She started getting unknown periodic fevers at three > months old. We were told by her pediatrician that > they were viral and to just let it run its course. > After the third episode, the pediatrician was > stumped > and referred us to an Infectious Disease doctor. > Three months later we got the diagnosis. At eight > months we started giving her Prednisolone. She went > from having fevers every 24 days to having them > every > 10 to 14 days. My husband and I feel helpless that > our little girl has to go through this and there is > nothing else we can do. I would appreciate any > advice. > > Sincerely, > Lichty > > __________________________________________________________ > Need a quick answer? Get one in minutes from people > who know. > Ask your question on www.Answers. > > > > > > [Non-text portions of this message have been > removed] > > __________________________________________________________ Have a burning question? Go to www.Answers. and get answers from real people who know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2007 Report Share Posted February 6, 2007 I think that he was against it because he didn't see a hundred percent cure with the tonsillectomy. It doesn't always work to alleviate the problem so he didn't want to rush and just remove them if it wasn't necc. Does your son still get fevers? And how old is he? Azzie From: [mailto: ] On Behalf Of Leanne Sent: Tuesday, February 06, 2007 1:34 PM Subject: RE: New member to group I was curious as to why the Dr. is so against tonsillectomy? My son had his removed and I was wondering why the Dr. would be against it. Thank you Azzie Fiouzi <azzief@... <mailto:azzief%40sbcglobal.net> > wrote: , My daughter had her first cycle at 10 months, we were on vacation in Hawaii, and thought she had heat exhaustion! Her next one came on her first birthday and then like clockwork every 4 -6 weeks! And hers last a week and go as high as 105! My pediatrician was the first suspect , but to make sure he sent us to an ID. The first ID was brutal to my daughter we were there for nearly 4 hours. They did not call it ! They said she didn't fit the pattern, which she does, the second ID thought she may have FMF, but her tests came back negative, so they just said she had cyclical fevers and wanted to put her on prednisone, I did not allow it, (my stupidity) because my friends daughter was on steroids for her asthma and had swollen up like a balloon and it scared me. It wasn't until this last July that we went to our last ID doctor, and they put her on Cimetidine, (with the dosage coming from Fran, they were way off!) They have also ruled out almost everything under the sun! Until this last Sunday my daughter had not cycled in 6 months. I have been hoping and praying that she outgrows it, but other than this 6 month relief, ... So we are giving the Cimetidine until june, (11 mo) and then if we see the patterns repeating we will take out her tonsils, she has missed so much school that she is really struggling and we just can't see her doing it much longer. My pediatrician is VERY much against a tonsillectomy. This is why we have waited this long. This doesn't mean that your daughter will not outgrow it, it just means that ours hasn't! Hopefully that helps. Azzie From: <mailto:%40> [mailto: <mailto:%40> ] On Behalf Of Creamer Sent: Sunday, February 04, 2007 5:07 PM <mailto:%40> Subject: RE: New member to group Azzie, I'm sorry to here that it took so long to get a diagnosis for your daughter. I do feel lucky that we have not had severe symptoms but I do wonder if we are on the right path for her diagnosis. I know the ID doctor did some other testing but now that I have specific info from this group, I can make sure the right tests were done. How long has your daughter had symptoms? The ID doctor we saw said my daughter should out grow them by four or five, now I'm wondering if that is true. Thanks for your advice. Madison 10 months --- Azzie Fiouzi <azzief@... <mailto:azzief%40sbcglobal.net> <mailto:azzief%40sbcglobal.net> > wrote: > , > > I know it feels hard and horrible, but you are among > the lucky. Many of us, > myself included did not get a diagnosis for years. > I have a nine year old, > and it took almost 5 years and many many infectious > disease specialists to > figure out what is wrong with her. It has only been > 4 months that my > daughter has had any relief and that's because she > has been taking > Cimetidine. (I refused steroids). So I truly feel > for you, for we have all > been there, but be happy that you at least know. > Just make sure as Fran > always says that you rule out other genetic > mutations. Good luck you have > found a great group here. I know that I count my > lucky stars. > > Azzie, > > Mom to Kianna 9 , Rustin 6, Bella 5 mo. > > > > > > From: <mailto:%40> <mailto:%40> > [mailto: <mailto:%40> <mailto:%40> ] On Behalf Of > Creamer > Sent: Saturday, February 03, 2007 1:28 PM > <mailto:%40> <mailto:%40> > Subject: New member to group > > > > My name is Lichty and I recently joined > this > group to gain information on and get > support from people that are also facing this > difficult prognosis in their children. My daughter > Madison was diagnosed with at six months old. > She started getting unknown periodic fevers at three > months old. We were told by her pediatrician that > they were viral and to just let it run its course. > After the third episode, the pediatrician was > stumped > and referred us to an Infectious Disease doctor. > Three months later we got the diagnosis. At eight > months we started giving her Prednisolone. She went > from having fevers every 24 days to having them > every > 10 to 14 days. My husband and I feel helpless that > our little girl has to go through this and there is > nothing else we can do. I would appreciate any > advice. > > Sincerely, > Lichty > > __________________________________________________________ > Need a quick answer? Get one in minutes from people > who know. > Ask your question on www.Answers. > > > > > > [Non-text portions of this message have been > removed] > > __________________________________________________________ Have a burning question? Go to www.Answers. and get answers from real people who know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2007 Report Share Posted February 6, 2007 Cade is 4 yrs old and he had his tonsils & adnoids out in October and he has been fever free. Sometimes he complains that his feet hurt and only at night. But no fever and he eats better and is just an all around little 4 yr old boy now. Azzie Fiouzi <azzief@...> wrote: I think that he was against it because he didn't see a hundred percent cure with the tonsillectomy. It doesn't always work to alleviate the problem so he didn't want to rush and just remove them if it wasn't necc. Does your son still get fevers? And how old is he? Azzie From: [mailto: ] On Behalf Of Leanne Sent: Tuesday, February 06, 2007 1:34 PM Subject: RE: New member to group I was curious as to why the Dr. is so against tonsillectomy? My son had his removed and I was wondering why the Dr. would be against it. Thank you Azzie Fiouzi <azzief@... <mailto:azzief%40sbcglobal.net> > wrote: , My daughter had her first cycle at 10 months, we were on vacation in Hawaii, and thought she had heat exhaustion! Her next one came on her first birthday and then like clockwork every 4 -6 weeks! And hers last a week and go as high as 105! My pediatrician was the first suspect , but to make sure he sent us to an ID. The first ID was brutal to my daughter we were there for nearly 4 hours. They did not call it ! They said she didn't fit the pattern, which she does, the second ID thought she may have FMF, but her tests came back negative, so they just said she had cyclical fevers and wanted to put her on prednisone, I did not allow it, (my stupidity) because my friends daughter was on steroids for her asthma and had swollen up like a balloon and it scared me. It wasn't until this last July that we went to our last ID doctor, and they put her on Cimetidine, (with the dosage coming from Fran, they were way off!) They have also ruled out almost everything under the sun! Until this last Sunday my daughter had not cycled in 6 months. I have been hoping and praying that she outgrows it, but other than this 6 month relief, ... So we are giving the Cimetidine until june, (11 mo) and then if we see the patterns repeating we will take out her tonsils, she has missed so much school that she is really struggling and we just can't see her doing it much longer. My pediatrician is VERY much against a tonsillectomy. This is why we have waited this long. This doesn't mean that your daughter will not outgrow it, it just means that ours hasn't! Hopefully that helps. Azzie From: <mailto:%40> [mailto: <mailto:%40> ] On Behalf Of Creamer Sent: Sunday, February 04, 2007 5:07 PM <mailto:%40> Subject: RE: New member to group Azzie, I'm sorry to here that it took so long to get a diagnosis for your daughter. I do feel lucky that we have not had severe symptoms but I do wonder if we are on the right path for her diagnosis. I know the ID doctor did some other testing but now that I have specific info from this group, I can make sure the right tests were done. How long has your daughter had symptoms? The ID doctor we saw said my daughter should out grow them by four or five, now I'm wondering if that is true. Thanks for your advice. Madison 10 months --- Azzie Fiouzi <azzief@... <mailto:azzief%40sbcglobal.net> <mailto:azzief%40sbcglobal.net> > wrote: > , > > I know it feels hard and horrible, but you are among > the lucky. Many of us, > myself included did not get a diagnosis for years. > I have a nine year old, > and it took almost 5 years and many many infectious > disease specialists to > figure out what is wrong with her. It has only been > 4 months that my > daughter has had any relief and that's because she > has been taking > Cimetidine. (I refused steroids). So I truly feel > for you, for we have all > been there, but be happy that you at least know. > Just make sure as Fran > always says that you rule out other genetic > mutations. Good luck you have > found a great group here. I know that I count my > lucky stars. > > Azzie, > > Mom to Kianna 9 , Rustin 6, Bella 5 mo. > > > > > > From: <mailto:%40> <mailto:%40> > [mailto: <mailto:%40> <mailto:%40> ] On Behalf Of > Creamer > Sent: Saturday, February 03, 2007 1:28 PM > <mailto:%40> <mailto:%40> > Subject: New member to group > > > > My name is Lichty and I recently joined > this > group to gain information on and get > support from people that are also facing this > difficult prognosis in their children. My daughter > Madison was diagnosed with at six months old. > She started getting unknown periodic fevers at three > months old. We were told by her pediatrician that > they were viral and to just let it run its course. > After the third episode, the pediatrician was > stumped > and referred us to an Infectious Disease doctor. > Three months later we got the diagnosis. At eight > months we started giving her Prednisolone. She went > from having fevers every 24 days to having them > every > 10 to 14 days. My husband and I feel helpless that > our little girl has to go through this and there is > nothing else we can do. I would appreciate any > advice. > > Sincerely, > Lichty > > __________________________________________________________ > Need a quick answer? Get one in minutes from people > who know. > Ask your question on www.Answers. > > > > > > [Non-text portions of this message have been > removed] > > __________________________________________________________ Have a burning question? Go to www.Answers. and get answers from real people who know. 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Guest guest Posted February 8, 2007 Report Share Posted February 8, 2007 Hopefully if and when we do this, (hopefully this summer) we will have the same results. I'm glad for your little boy, its comforting to know that you were able to help your child. Azzie, Mom to Kianna 9 years old, Rustin 6, Bella 5 mo From: [mailto: ] On Behalf Of Leanne Sent: Tuesday, February 06, 2007 4:21 PM Subject: RE: New member to group Cade is 4 yrs old and he had his tonsils & adnoids out in October and he has been fever free. Sometimes he complains that his feet hurt and only at night. But no fever and he eats better and is just an all around little 4 yr old boy now. Azzie Fiouzi <azzief@... <mailto:azzief%40sbcglobal.net> > wrote: I think that he was against it because he didn't see a hundred percent cure with the tonsillectomy. It doesn't always work to alleviate the problem so he didn't want to rush and just remove them if it wasn't necc. Does your son still get fevers? And how old is he? Azzie From: <mailto:%40> [mailto: <mailto:%40> ] On Behalf Of Leanne Sent: Tuesday, February 06, 2007 1:34 PM <mailto:%40> Subject: RE: New member to group I was curious as to why the Dr. is so against tonsillectomy? My son had his removed and I was wondering why the Dr. would be against it. Thank you Azzie Fiouzi <azzief@... <mailto:azzief%40sbcglobal.net> <mailto:azzief%40sbcglobal.net> > wrote: , My daughter had her first cycle at 10 months, we were on vacation in Hawaii, and thought she had heat exhaustion! Her next one came on her first birthday and then like clockwork every 4 -6 weeks! And hers last a week and go as high as 105! My pediatrician was the first suspect , but to make sure he sent us to an ID. The first ID was brutal to my daughter we were there for nearly 4 hours. They did not call it ! They said she didn't fit the pattern, which she does, the second ID thought she may have FMF, but her tests came back negative, so they just said she had cyclical fevers and wanted to put her on prednisone, I did not allow it, (my stupidity) because my friends daughter was on steroids for her asthma and had swollen up like a balloon and it scared me. It wasn't until this last July that we went to our last ID doctor, and they put her on Cimetidine, (with the dosage coming from Fran, they were way off!) They have also ruled out almost everything under the sun! Until this last Sunday my daughter had not cycled in 6 months. I have been hoping and praying that she outgrows it, but other than this 6 month relief, ... So we are giving the Cimetidine until june, (11 mo) and then if we see the patterns repeating we will take out her tonsils, she has missed so much school that she is really struggling and we just can't see her doing it much longer. My pediatrician is VERY much against a tonsillectomy. This is why we have waited this long. This doesn't mean that your daughter will not outgrow it, it just means that ours hasn't! Hopefully that helps. Azzie From: <mailto:%40> <mailto:%40> [mailto: <mailto:%40> <mailto:%40> ] On Behalf Of Creamer Sent: Sunday, February 04, 2007 5:07 PM <mailto:%40> <mailto:%40> Subject: RE: New member to group Azzie, I'm sorry to here that it took so long to get a diagnosis for your daughter. I do feel lucky that we have not had severe symptoms but I do wonder if we are on the right path for her diagnosis. I know the ID doctor did some other testing but now that I have specific info from this group, I can make sure the right tests were done. How long has your daughter had symptoms? The ID doctor we saw said my daughter should out grow them by four or five, now I'm wondering if that is true. Thanks for your advice. Madison 10 months --- Azzie Fiouzi <azzief@... <mailto:azzief%40sbcglobal.net> <mailto:azzief%40sbcglobal.net> <mailto:azzief%40sbcglobal.net> > wrote: > , > > I know it feels hard and horrible, but you are among > the lucky. Many of us, > myself included did not get a diagnosis for years. > I have a nine year old, > and it took almost 5 years and many many infectious > disease specialists to > figure out what is wrong with her. It has only been > 4 months that my > daughter has had any relief and that's because she > has been taking > Cimetidine. (I refused steroids). So I truly feel > for you, for we have all > been there, but be happy that you at least know. > Just make sure as Fran > always says that you rule out other genetic > mutations. Good luck you have > found a great group here. I know that I count my > lucky stars. > > Azzie, > > Mom to Kianna 9 , Rustin 6, Bella 5 mo. > > > > > > From: <mailto:%40> <mailto:%40> <mailto:%40> > [mailto: <mailto:%40> <mailto:%40> <mailto:%40> ] On Behalf Of > Creamer > Sent: Saturday, February 03, 2007 1:28 PM > <mailto:%40> <mailto:%40> <mailto:%40> > Subject: New member to group > > > > My name is Lichty and I recently joined > this > group to gain information on and get > support from people that are also facing this > difficult prognosis in their children. My daughter > Madison was diagnosed with at six months old. > She started getting unknown periodic fevers at three > months old. We were told by her pediatrician that > they were viral and to just let it run its course. > After the third episode, the pediatrician was > stumped > and referred us to an Infectious Disease doctor. > Three months later we got the diagnosis. At eight > months we started giving her Prednisolone. She went > from having fevers every 24 days to having them > every > 10 to 14 days. My husband and I feel helpless that > our little girl has to go through this and there is > nothing else we can do. I would appreciate any > advice. > > Sincerely, > Lichty > > __________________________________________________________ > Need a quick answer? Get one in minutes from people > who know. > Ask your question on www.Answers. > > > > > > [Non-text portions of this message have been > removed] > > __________________________________________________________ Have a burning question? Go to www.Answers. and get answers from real people who know. Quote Link to comment Share on other sites More sharing options...
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