Guest guest Posted June 22, 2004 Report Share Posted June 22, 2004 I Tania and welcome. Is your doctor planning to do genetic testing for FMF, TRAPS and HIDS? Rosemarie Mom to Danny age 10 Denver, CO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2004 Report Share Posted June 22, 2004 I am not quite sure what you are referring to. I know that he is testing to rule out cyclic neutropenia, familial Meddieterranean fever (oh i guess this must be FMF) because I am Lebanese, and Behcet Syndrome. I am not sure what the other ones are that you are talking about. please explain. Thanks Tania 's mom- Age 5 Torrington, CT > I Tania and welcome. > > Is your doctor planning to do genetic testing for FMF, TRAPS and HIDS? > > Rosemarie > Mom to Danny age 10 > Denver, CO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2004 Report Share Posted June 22, 2004 I am not quite sure what you are referring to. I know that he is testing to rule out cyclic neutropenia, familial Meddieterranean fever (oh i guess this must be FMF) because I am Lebanese, and Behcet Syndrome. I am not sure what the other ones are that you are talking about. please explain. Thanks Tania 's mom- Age 5 Torrington, CT > I Tania and welcome. > > Is your doctor planning to do genetic testing for FMF, TRAPS and HIDS? > > Rosemarie > Mom to Danny age 10 > Denver, CO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2004 Report Share Posted June 22, 2004 Hi Tania, My son Drew, who is 2 1/2, was diagnosed with about a year ago. He has pretty much every symptom with episodes, fevers to 104, swollen lymph nodes, swollen tonsils, and mouth sores. He also had lyme disease a few months after he was diagnosed. I would have dismissed the lyme disease as a fever episode, as they looked exactly the same with the exception that he had had a rash on his leg for about a week prior (and then the positive blood tests for lyme). So can look just like lyme disease- Waiting for all the blood tests can be frustrating- but hang in there. Welcome to the group! mom to Drew, age 2 Coventry RI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2004 Report Share Posted June 22, 2004 Hi Tania, My son Drew, who is 2 1/2, was diagnosed with about a year ago. He has pretty much every symptom with episodes, fevers to 104, swollen lymph nodes, swollen tonsils, and mouth sores. He also had lyme disease a few months after he was diagnosed. I would have dismissed the lyme disease as a fever episode, as they looked exactly the same with the exception that he had had a rash on his leg for about a week prior (and then the positive blood tests for lyme). So can look just like lyme disease- Waiting for all the blood tests can be frustrating- but hang in there. Welcome to the group! mom to Drew, age 2 Coventry RI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2004 Report Share Posted June 23, 2004 HIDS and TRAPS are other periodic fever conditions that have genetic markers. If you check the archives and the articles on file, there is a lot of information about both of them. After talking to Janet , Dr. Kastner's nurse/assistant at National Institute of Health in D.C., we had our son tested for FMF because I'm Italian and TRAPS because my husband is Irish/German. Janet Jone's contact information is also available in the archives. I'm sorry I don't have it handy right now or I'd give it to you. Rosemarie Mom to Danny age 10 Denver, CO Re: Introduction > I am not quite sure what you are referring to. I know that he is > testing to rule out cyclic neutropenia, familial Meddieterranean > fever (oh i guess this must be FMF) because I am Lebanese, and > Behcet Syndrome. I am not sure what the other ones are that you are > talking about. please explain. > > Thanks > Tania > 's mom- Age 5 > Torrington, CT > > > > > > > > I Tania and welcome. > > > > Is your doctor planning to do genetic testing for FMF, TRAPS and > HIDS? > > > > Rosemarie > > Mom to Danny age 10 > > Denver, CO > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2004 Report Share Posted June 23, 2004 HIDS and TRAPS are other periodic fever conditions that have genetic markers. If you check the archives and the articles on file, there is a lot of information about both of them. After talking to Janet , Dr. Kastner's nurse/assistant at National Institute of Health in D.C., we had our son tested for FMF because I'm Italian and TRAPS because my husband is Irish/German. Janet Jone's contact information is also available in the archives. I'm sorry I don't have it handy right now or I'd give it to you. Rosemarie Mom to Danny age 10 Denver, CO Re: Introduction > I am not quite sure what you are referring to. I know that he is > testing to rule out cyclic neutropenia, familial Meddieterranean > fever (oh i guess this must be FMF) because I am Lebanese, and > Behcet Syndrome. I am not sure what the other ones are that you are > talking about. please explain. > > Thanks > Tania > 's mom- Age 5 > Torrington, CT > > > > > > > > I Tania and welcome. > > > > Is your doctor planning to do genetic testing for FMF, TRAPS and > HIDS? > > > > Rosemarie > > Mom to Danny age 10 > > Denver, CO > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Marie, I am so sorry to hear of all the terrible things you have gone through. I hope you find support in this group. My daughter also has hit 107+ and it is very scary. Fortunately i was able to keep her hydrated with popsicles and pedialite. Alternating the Motrin and Tylenol also helps too. I have never used steriods but others in the group has had very good success with them. Keep the Faith and God Bless you and your family. Hegelein Southampton, NJ -- In , " ahahahni1 " <ahahahni1@y...> wrote: > I am glad to have found this list. I feel so overwhelmed currently > and just feel so frustrated. Let me first give an intro on myslef. My > name is Marie Mac and I have two children Madalyn age 9 and > (10 mo almost 11 mo). has been very healthy since he > was about 4 mo old. He never even had a ear infection yet! When he > was 8 mo old my milk dried up so we stopped breastfeeding. He started > to use formula. In June 2004 he developed a high fever 107.8! We took > him to ER they said he had pneumonia which I thoiught was werid since > has hasn't even wheezed. They tried to get him an IV and evetually > succeded. They gaev him a shot of rosephin and tried to send us home. > I raised a big deal since he wasn't eatign and drinking and they > were going to send us home and todl us to give him an antiboic and > switch Ibu and tylenol every 4 hours. They called my reg doc and the > doc requested they send us to Cook's children hospital in Fort Worth, > TX. An ambulance took us there. After the doc looked him over he said > he only had a virus and sent us home after givign him a full dose of > Iv's and more intraveinous antibotics. The fever evetualy subsided > and he was back to normal. In July he got fever again this tiem > highest was 106.9. He had diarehha this time. First tiem he had it > there were no other symptoms. They checked him for a lot of different > things. He had a cat scan and upper and lower GI. They thought he > had C-dif and sent off culture and it was neg. They thought he had > crohns and that was teh reason for the GI's. He was in hospital 5 > days. He was really dehydrated with this one too and had a hard time > with Iv's and takign blood. IN Aug he got in again and thsi tiem it > was highest 106.8. No other symptoms. I called doc and he called > infectious disese doctor at Cook's CHildrens. We went to ER and saw > an ER doc since Infectiuos doc was not able to make it in that night. > They gave him ibuprofen adn took labs. The doc saw him while he was > actibg okay since fever was down and said it probably a virus adn > will send us home. I just lost it and asked him why would he send a > baby hoem with high fever that is not eatign or drinking? Adn > stressed to him again thsi was not a virus and he gets it regulrly. > He seemed to clow us off and said he'd wait for labs. s fever > went up again to 106. He got like a " hot puddle " just floppy and > weak. I todl them to call that doc in to look at him. He came adn > was as he said " quite impressed with difference " . He also said white > blood cells were high and so were sed? test results. He said he woudl > call the infectiuos disesae doc again. Suprise, Surprise they > admitted us. He was in for 4 days and was very dehydrated. At one > tiem the only place they could take blood or get an IV in was his > head. He's always perk right up when fever was down due to meds but > wasn't eating or drinking till 4th day hospital stay and 5th day > illness. THey checked him from everything from HIV to Cat scratch > fever. The doctor thinks he has and sent us hoem with a > prescription for steroid just in case. We are suppossed to call her > when he has next episode because she wants to see him when it first > starts. She'd liek to administer Steroid if its during week or she's > on call but she gave us a steroid prescription just in case we aren't > able to see her. He is fine for now and we just dread the next three > to four weeks. Do you all have so many problems with dehydration? Do > your kids have to be hospitalized frequently? How well does the > steriod work? > > Marie > > Mom to 10 mo (almost 11 mo), and Madalyn age 9 in > ville, Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Marie, I am so sorry to hear of all the terrible things you have gone through. I hope you find support in this group. My daughter also has hit 107+ and it is very scary. Fortunately i was able to keep her hydrated with popsicles and pedialite. Alternating the Motrin and Tylenol also helps too. I have never used steriods but others in the group has had very good success with them. Keep the Faith and God Bless you and your family. Hegelein Southampton, NJ -- In , " ahahahni1 " <ahahahni1@y...> wrote: > I am glad to have found this list. I feel so overwhelmed currently > and just feel so frustrated. Let me first give an intro on myslef. My > name is Marie Mac and I have two children Madalyn age 9 and > (10 mo almost 11 mo). has been very healthy since he > was about 4 mo old. He never even had a ear infection yet! When he > was 8 mo old my milk dried up so we stopped breastfeeding. He started > to use formula. In June 2004 he developed a high fever 107.8! We took > him to ER they said he had pneumonia which I thoiught was werid since > has hasn't even wheezed. They tried to get him an IV and evetually > succeded. They gaev him a shot of rosephin and tried to send us home. > I raised a big deal since he wasn't eatign and drinking and they > were going to send us home and todl us to give him an antiboic and > switch Ibu and tylenol every 4 hours. They called my reg doc and the > doc requested they send us to Cook's children hospital in Fort Worth, > TX. An ambulance took us there. After the doc looked him over he said > he only had a virus and sent us home after givign him a full dose of > Iv's and more intraveinous antibotics. The fever evetualy subsided > and he was back to normal. In July he got fever again this tiem > highest was 106.9. He had diarehha this time. First tiem he had it > there were no other symptoms. They checked him for a lot of different > things. He had a cat scan and upper and lower GI. They thought he > had C-dif and sent off culture and it was neg. They thought he had > crohns and that was teh reason for the GI's. He was in hospital 5 > days. He was really dehydrated with this one too and had a hard time > with Iv's and takign blood. IN Aug he got in again and thsi tiem it > was highest 106.8. No other symptoms. I called doc and he called > infectious disese doctor at Cook's CHildrens. We went to ER and saw > an ER doc since Infectiuos doc was not able to make it in that night. > They gave him ibuprofen adn took labs. The doc saw him while he was > actibg okay since fever was down and said it probably a virus adn > will send us home. I just lost it and asked him why would he send a > baby hoem with high fever that is not eatign or drinking? Adn > stressed to him again thsi was not a virus and he gets it regulrly. > He seemed to clow us off and said he'd wait for labs. s fever > went up again to 106. He got like a " hot puddle " just floppy and > weak. I todl them to call that doc in to look at him. He came adn > was as he said " quite impressed with difference " . He also said white > blood cells were high and so were sed? test results. He said he woudl > call the infectiuos disesae doc again. Suprise, Surprise they > admitted us. He was in for 4 days and was very dehydrated. At one > tiem the only place they could take blood or get an IV in was his > head. He's always perk right up when fever was down due to meds but > wasn't eating or drinking till 4th day hospital stay and 5th day > illness. THey checked him from everything from HIV to Cat scratch > fever. The doctor thinks he has and sent us hoem with a > prescription for steroid just in case. We are suppossed to call her > when he has next episode because she wants to see him when it first > starts. She'd liek to administer Steroid if its during week or she's > on call but she gave us a steroid prescription just in case we aren't > able to see her. He is fine for now and we just dread the next three > to four weeks. Do you all have so many problems with dehydration? Do > your kids have to be hospitalized frequently? How well does the > steriod work? > > Marie > > Mom to 10 mo (almost 11 mo), and Madalyn age 9 in > ville, Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Ok, Fran. I am evil. I STILL have not brought all those surveys over to the hospital. I've just been swamped! Mike is still out of town and the kids seem to have something everyday plus I've had a lot of legal work of late. I will do it, however!!!! Rosemarie introduction > I am glad to have found this list. I feel so overwhelmed currently > and just feel so frustrated. Let me first give an intro on myslef. My > name is Marie Mac and I have two children Madalyn age 9 and > (10 mo almost 11 mo). has been very healthy since he > was about 4 mo old. He never even had a ear infection yet! When he > was 8 mo old my milk dried up so we stopped breastfeeding. He started > to use formula. In June 2004 he developed a high fever 107.8! We took > him to ER they said he had pneumonia which I thoiught was werid since > has hasn't even wheezed. They tried to get him an IV and evetually > succeded. They gaev him a shot of rosephin and tried to send us home. > I raised a big deal since he wasn't eatign and drinking and they > were going to send us home and todl us to give him an antiboic and > switch Ibu and tylenol every 4 hours. They called my reg doc and the > doc requested they send us to Cook's children hospital in Fort Worth, > TX. An ambulance took us there. After the doc looked him over he said > he only had a virus and sent us home after givign him a full dose of > Iv's and more intraveinous antibotics. The fever evetualy subsided > and he was back to normal. In July he got fever again this tiem > highest was 106.9. He had diarehha this time. First tiem he had it > there were no other symptoms. They checked him for a lot of different > things. He had a cat scan and upper and lower GI. They thought he > had C-dif and sent off culture and it was neg. They thought he had > crohns and that was teh reason for the GI's. He was in hospital 5 > days. He was really dehydrated with this one too and had a hard time > with Iv's and takign blood. IN Aug he got in again and thsi tiem it > was highest 106.8. No other symptoms. I called doc and he called > infectious disese doctor at Cook's CHildrens. We went to ER and saw > an ER doc since Infectiuos doc was not able to make it in that night. > They gave him ibuprofen adn took labs. The doc saw him while he was > actibg okay since fever was down and said it probably a virus adn > will send us home. I just lost it and asked him why would he send a > baby hoem with high fever that is not eatign or drinking? Adn > stressed to him again thsi was not a virus and he gets it regulrly. > He seemed to clow us off and said he'd wait for labs. s fever > went up again to 106. He got like a " hot puddle " just floppy and > weak. I todl them to call that doc in to look at him. He came adn > was as he said " quite impressed with difference " . He also said white > blood cells were high and so were sed? test results. He said he woudl > call the infectiuos disesae doc again. Suprise, Surprise they > admitted us. He was in for 4 days and was very dehydrated. At one > tiem the only place they could take blood or get an IV in was his > head. He's always perk right up when fever was down due to meds but > wasn't eating or drinking till 4th day hospital stay and 5th day > illness. THey checked him from everything from HIV to Cat scratch > fever. The doctor thinks he has and sent us hoem with a > prescription for steroid just in case. We are suppossed to call her > when he has next episode because she wants to see him when it first > starts. She'd liek to administer Steroid if its during week or she's > on call but she gave us a steroid prescription just in case we aren't > able to see her. He is fine for now and we just dread the next three > to four weeks. Do you all have so many problems with dehydration? Do > your kids have to be hospitalized frequently? How well does the > steriod work? > > Marie > > Mom to 10 mo (almost 11 mo), and Madalyn age 9 in > ville, Texas > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Ok, Fran. I am evil. I STILL have not brought all those surveys over to the hospital. I've just been swamped! Mike is still out of town and the kids seem to have something everyday plus I've had a lot of legal work of late. I will do it, however!!!! Rosemarie introduction > I am glad to have found this list. I feel so overwhelmed currently > and just feel so frustrated. Let me first give an intro on myslef. My > name is Marie Mac and I have two children Madalyn age 9 and > (10 mo almost 11 mo). has been very healthy since he > was about 4 mo old. He never even had a ear infection yet! When he > was 8 mo old my milk dried up so we stopped breastfeeding. He started > to use formula. In June 2004 he developed a high fever 107.8! We took > him to ER they said he had pneumonia which I thoiught was werid since > has hasn't even wheezed. They tried to get him an IV and evetually > succeded. They gaev him a shot of rosephin and tried to send us home. > I raised a big deal since he wasn't eatign and drinking and they > were going to send us home and todl us to give him an antiboic and > switch Ibu and tylenol every 4 hours. They called my reg doc and the > doc requested they send us to Cook's children hospital in Fort Worth, > TX. An ambulance took us there. After the doc looked him over he said > he only had a virus and sent us home after givign him a full dose of > Iv's and more intraveinous antibotics. The fever evetualy subsided > and he was back to normal. In July he got fever again this tiem > highest was 106.9. He had diarehha this time. First tiem he had it > there were no other symptoms. They checked him for a lot of different > things. He had a cat scan and upper and lower GI. They thought he > had C-dif and sent off culture and it was neg. They thought he had > crohns and that was teh reason for the GI's. He was in hospital 5 > days. He was really dehydrated with this one too and had a hard time > with Iv's and takign blood. IN Aug he got in again and thsi tiem it > was highest 106.8. No other symptoms. I called doc and he called > infectious disese doctor at Cook's CHildrens. We went to ER and saw > an ER doc since Infectiuos doc was not able to make it in that night. > They gave him ibuprofen adn took labs. The doc saw him while he was > actibg okay since fever was down and said it probably a virus adn > will send us home. I just lost it and asked him why would he send a > baby hoem with high fever that is not eatign or drinking? Adn > stressed to him again thsi was not a virus and he gets it regulrly. > He seemed to clow us off and said he'd wait for labs. s fever > went up again to 106. He got like a " hot puddle " just floppy and > weak. I todl them to call that doc in to look at him. He came adn > was as he said " quite impressed with difference " . He also said white > blood cells were high and so were sed? test results. He said he woudl > call the infectiuos disesae doc again. Suprise, Surprise they > admitted us. He was in for 4 days and was very dehydrated. At one > tiem the only place they could take blood or get an IV in was his > head. He's always perk right up when fever was down due to meds but > wasn't eating or drinking till 4th day hospital stay and 5th day > illness. THey checked him from everything from HIV to Cat scratch > fever. The doctor thinks he has and sent us hoem with a > prescription for steroid just in case. We are suppossed to call her > when he has next episode because she wants to see him when it first > starts. She'd liek to administer Steroid if its during week or she's > on call but she gave us a steroid prescription just in case we aren't > able to see her. He is fine for now and we just dread the next three > to four weeks. Do you all have so many problems with dehydration? Do > your kids have to be hospitalized frequently? How well does the > steriod work? > > Marie > > Mom to 10 mo (almost 11 mo), and Madalyn age 9 in > ville, Texas > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 Hi Azzie, Welcome to the group. Everyone here totally understands what you're going through and what you have to face every time you have to explain her fevers. My son began getting fevers in kindergarten. We finally put together a pattern in first grade. We started him on Cimetidine which did decrease the severity of the fevers and lengthen the time in between episodes, but it didn't eliminate them completely. We finally elected to have his tonsils removed in May 2002 at the end of second grade. I am thankful and blessed to report that he hasn't had a fever since then. While a tonsillectomy hasn't worked for everyone on the site, it has worked for the majority and has tended to at least reduce symptoms even in the children it has not " cured. " You definitely have a lot of testing ahead of you before you can make that decision. You'll learn a lot here and we're all behind you. Again, welcome! Rosemarie Mom to Danny age 10 Denver, CO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 Hi Azzie, Welcome to the group. Everyone here totally understands what you're going through and what you have to face every time you have to explain her fevers. My son began getting fevers in kindergarten. We finally put together a pattern in first grade. We started him on Cimetidine which did decrease the severity of the fevers and lengthen the time in between episodes, but it didn't eliminate them completely. We finally elected to have his tonsils removed in May 2002 at the end of second grade. I am thankful and blessed to report that he hasn't had a fever since then. While a tonsillectomy hasn't worked for everyone on the site, it has worked for the majority and has tended to at least reduce symptoms even in the children it has not " cured. " You definitely have a lot of testing ahead of you before you can make that decision. You'll learn a lot here and we're all behind you. Again, welcome! Rosemarie Mom to Danny age 10 Denver, CO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 Rosemary, Thanks for your imput, I do feel like this group is definately helping. I'm glad to hear that your son is well. So how long has it been since he had his tonsils removed? Do you think that was it or do you think he grew out of it. I've been told that sometime they just grow out of it. Azzie, Mother to Kianna, 6 1/2 Rosemarie/Mike <askent@...> wrote: Hi Azzie, Welcome to the group. Everyone here totally understands what you're going through and what you have to face every time you have to explain her fevers. My son began getting fevers in kindergarten. We finally put together a pattern in first grade. We started him on Cimetidine which did decrease the severity of the fevers and lengthen the time in between episodes, but it didn't eliminate them completely. We finally elected to have his tonsils removed in May 2002 at the end of second grade. I am thankful and blessed to report that he hasn't had a fever since then. While a tonsillectomy hasn't worked for everyone on the site, it has worked for the majority and has tended to at least reduce symptoms even in the children it has not " cured. " You definitely have a lot of testing ahead of you before you can make that decision. You'll learn a lot here and we're all behind you. Again, welcome! Rosemarie Mom to Danny age 10 Denver, CO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 Rosemary, Thanks for your imput, I do feel like this group is definately helping. I'm glad to hear that your son is well. So how long has it been since he had his tonsils removed? Do you think that was it or do you think he grew out of it. I've been told that sometime they just grow out of it. Azzie, Mother to Kianna, 6 1/2 Rosemarie/Mike <askent@...> wrote: Hi Azzie, Welcome to the group. Everyone here totally understands what you're going through and what you have to face every time you have to explain her fevers. My son began getting fevers in kindergarten. We finally put together a pattern in first grade. We started him on Cimetidine which did decrease the severity of the fevers and lengthen the time in between episodes, but it didn't eliminate them completely. We finally elected to have his tonsils removed in May 2002 at the end of second grade. I am thankful and blessed to report that he hasn't had a fever since then. While a tonsillectomy hasn't worked for everyone on the site, it has worked for the majority and has tended to at least reduce symptoms even in the children it has not " cured. " You definitely have a lot of testing ahead of you before you can make that decision. You'll learn a lot here and we're all behind you. Again, welcome! Rosemarie Mom to Danny age 10 Denver, CO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 Hi Azzie, No, it was definitely the tonsillectomy. He didn't suddenly " grow out of it " . I've heard of kids doing that, but there was no way we felt that we could wait for years for that to happen. Especially since he was 5 when his fevers started. In first grade alone, he missed 30 days between January and May! We couldn't let him continue to do that and fall behind (luckily, he's smart and it was just 1st grade) and we didn't want him being perceived by his peers as a " sick child. " Plus, our whole family had to be put on hold every month. It was just too much for everyone. It's a personal decision for each family, but we have NO regrets that we pursued the tonsillectomy, and we are SO, SO, DOWN ON OUR KNEES thankful that it worked for Danny. Rosemarie Mom to Danny age 10 Denver, CO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2004 Report Share Posted August 31, 2004 Hi Azzie, No, it was definitely the tonsillectomy. He didn't suddenly " grow out of it " . I've heard of kids doing that, but there was no way we felt that we could wait for years for that to happen. Especially since he was 5 when his fevers started. In first grade alone, he missed 30 days between January and May! We couldn't let him continue to do that and fall behind (luckily, he's smart and it was just 1st grade) and we didn't want him being perceived by his peers as a " sick child. " Plus, our whole family had to be put on hold every month. It was just too much for everyone. It's a personal decision for each family, but we have NO regrets that we pursued the tonsillectomy, and we are SO, SO, DOWN ON OUR KNEES thankful that it worked for Danny. Rosemarie Mom to Danny age 10 Denver, CO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 Hi Rosemary, Thanks for your reply. I appreciate your imput. I recently read that tonsillectomies work on kids who don't have " inherited " traits. Have you heard about that and if so what kind of genetic testing do they do to determine that? Azzie Mom to Kianna 6 1/2 California Rosemarie/Mike <askent@...> wrote: Hi Azzie, No, it was definitely the tonsillectomy. He didn't suddenly " grow out of it " . I've heard of kids doing that, but there was no way we felt that we could wait for years for that to happen. Especially since he was 5 when his fevers started. In first grade alone, he missed 30 days between January and May! We couldn't let him continue to do that and fall behind (luckily, he's smart and it was just 1st grade) and we didn't want him being perceived by his peers as a " sick child. " Plus, our whole family had to be put on hold every month. It was just too much for everyone. It's a personal decision for each family, but we have NO regrets that we pursued the tonsillectomy, and we are SO, SO, DOWN ON OUR KNEES thankful that it worked for Danny. Rosemarie Mom to Danny age 10 Denver, CO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2004 Report Share Posted September 1, 2004 Hi Rosemary, Thanks for your reply. I appreciate your imput. I recently read that tonsillectomies work on kids who don't have " inherited " traits. Have you heard about that and if so what kind of genetic testing do they do to determine that? Azzie Mom to Kianna 6 1/2 California Rosemarie/Mike <askent@...> wrote: Hi Azzie, No, it was definitely the tonsillectomy. He didn't suddenly " grow out of it " . I've heard of kids doing that, but there was no way we felt that we could wait for years for that to happen. Especially since he was 5 when his fevers started. In first grade alone, he missed 30 days between January and May! We couldn't let him continue to do that and fall behind (luckily, he's smart and it was just 1st grade) and we didn't want him being perceived by his peers as a " sick child. " Plus, our whole family had to be put on hold every month. It was just too much for everyone. It's a personal decision for each family, but we have NO regrets that we pursued the tonsillectomy, and we are SO, SO, DOWN ON OUR KNEES thankful that it worked for Danny. Rosemarie Mom to Danny age 10 Denver, CO Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2004 Report Share Posted September 16, 2004 Dave, Sorry to hear about your daughter. I was searching not to long ago like you but this group has helped a lot. Check out the files section on the different genetic disorders (TRAPS, FMF and HIDS) as well as others. Also check out the archives for old messages that will be helpful for you. Tracey mom to Maddie, 5 Brent, 9 League city, TX On Thursday, September 16, 2004, at 12:50 PM, dave endo wrote: > > I apologize for not having complete details, but this is a rough > overview of > what is going on. > > > I have a 2 1/2 year old daughter name andra(I call her Lexi) that > has > " unknown " fevers. It started when she was 6 months old. It was > determined > she had an ear infection, but it kept coming back every 3 weeks. So > she had > tubes put in her ears, she still got fevers so it was determined a > sinus > infection (just because she has allergies). In some cases the > instant-care > clinic couldn’t find anything wrong and gave antibiotics “just > because” she > had a high fever. This went on for months, till her tubes fell out. > When > her fever came back, they assumed an ear infection. So she got tubes > and > her adnoids removed. A couple of weeks later with another fever, her > tubes > weren’t draining, but guessed an infection “somewhere”, and gave more > antibiotics. > > Finally after 2 years of this, her pediatrician couldn’t do anything > more > and sent us to a blood disease specialist who then referred us to a > juvenile > rumatoid arthritis specialist. We still don’t know what is going on, > but > Periodic Fever was one of the potential reasons. However, there were > others, TRAPS, Crohn’s, etc. > > After a multitude of blood tests, doses of antibiotics, etc. We are > very > frustrated. At this point I feel like we are chasing our tails…our > pediatrician doesn’t want to see her for fevers and refers us to the > specialist, who then refers us to another. I’m concerned this will > never > end. > > After long hours of searching the Internet I found this forum. I’m > hoping > to find some hope and direction in helping my daughter. > > > > Dave > Ogden, Utah > > _________________________________________________________________ > Express yourself instantly with MSN Messenger! Download today - it's > FREE! > http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2004 Report Share Posted September 16, 2004 Dave, Sorry to hear about your daughter. I was searching not to long ago like you but this group has helped a lot. Check out the files section on the different genetic disorders (TRAPS, FMF and HIDS) as well as others. Also check out the archives for old messages that will be helpful for you. Tracey mom to Maddie, 5 Brent, 9 League city, TX On Thursday, September 16, 2004, at 12:50 PM, dave endo wrote: > > I apologize for not having complete details, but this is a rough > overview of > what is going on. > > > I have a 2 1/2 year old daughter name andra(I call her Lexi) that > has > " unknown " fevers. It started when she was 6 months old. It was > determined > she had an ear infection, but it kept coming back every 3 weeks. So > she had > tubes put in her ears, she still got fevers so it was determined a > sinus > infection (just because she has allergies). In some cases the > instant-care > clinic couldn’t find anything wrong and gave antibiotics “just > because” she > had a high fever. This went on for months, till her tubes fell out. > When > her fever came back, they assumed an ear infection. So she got tubes > and > her adnoids removed. A couple of weeks later with another fever, her > tubes > weren’t draining, but guessed an infection “somewhere”, and gave more > antibiotics. > > Finally after 2 years of this, her pediatrician couldn’t do anything > more > and sent us to a blood disease specialist who then referred us to a > juvenile > rumatoid arthritis specialist. We still don’t know what is going on, > but > Periodic Fever was one of the potential reasons. However, there were > others, TRAPS, Crohn’s, etc. > > After a multitude of blood tests, doses of antibiotics, etc. We are > very > frustrated. At this point I feel like we are chasing our tails…our > pediatrician doesn’t want to see her for fevers and refers us to the > specialist, who then refers us to another. I’m concerned this will > never > end. > > After long hours of searching the Internet I found this forum. I’m > hoping > to find some hope and direction in helping my daughter. > > > > Dave > Ogden, Utah > > _________________________________________________________________ > Express yourself instantly with MSN Messenger! Download today - it's > FREE! > http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2004 Report Share Posted September 22, 2004 I agree 100%. It is even hard to work for hospitals and clinics that understand the nature of an illness, but still DON " T REALLY understand when it effects one of their employees children. I quit working because the hospital and clinic thought I just used it as an excuse to ge to out of work...All the doctor appointments for Mathieu in the beginning stages of diagnosis, just flew my boss overboard......What can ya do, they are short staffed as it is anyway, yet having a parent like me on boared with limited days to offer. Oh-well, we have learned to live within the budget on just my husband's income. I am going to school to complete my degree, and to have a chance get out of the house a few nights a week!!!! Good luck Janet Jay I took a long break from work because of 's fevers. I just started a new job a month ago and I've already taken off 5 days. It is difficult for both of us to take time off from work every month for this. Right now, my husband had to submit papers to the doctor to have them signed, explaining why he had to take 10 days off last year for Logan's illness. I took the rest of the days off. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2004 Report Share Posted September 22, 2004 I agree 100%. It is even hard to work for hospitals and clinics that understand the nature of an illness, but still DON " T REALLY understand when it effects one of their employees children. I quit working because the hospital and clinic thought I just used it as an excuse to ge to out of work...All the doctor appointments for Mathieu in the beginning stages of diagnosis, just flew my boss overboard......What can ya do, they are short staffed as it is anyway, yet having a parent like me on boared with limited days to offer. Oh-well, we have learned to live within the budget on just my husband's income. I am going to school to complete my degree, and to have a chance get out of the house a few nights a week!!!! Good luck Janet Jay I took a long break from work because of 's fevers. I just started a new job a month ago and I've already taken off 5 days. It is difficult for both of us to take time off from work every month for this. Right now, my husband had to submit papers to the doctor to have them signed, explaining why he had to take 10 days off last year for Logan's illness. I took the rest of the days off. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2004 Report Share Posted October 11, 2004 Hi , Welcome to the group! I dont often post but always read the different stories here and on the fmf groups, my daughter now is nearly 5yrs also has periodic fever, just like you I had to force myself and Olivia onto the doctor's and just like you we would be told its an ear-ach or viral infection, etc. After finely getting into Great ormond street hospital in London (Yes we live in the UK) we are now under a Prof. which takes us much more seriously, but although finding out Olivia has 'A type of periodic fever' they have yet to find out which one, however she is on colchicne and has been reacting to this, they (and myself) would have sworn it to be FMF but our Prof. that has been doing gene testing on Olivia's DNA has said although she has a gene mutation it was NOT that from FMF. Both the groups I belong to 'the ' I joined when I found out about Olivia's illness and the FMF group I joined when she started taking colchicine as this is what we all thought she could have as she responded to the drug 'it made sense to assume this'! They have all been very supportive and always offer good advise. I had to post as your story is so similar to my own and we wish you, your daughter Kaitlyn and your family well in your hunt for the right answer Regards Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2004 Report Share Posted October 11, 2004 Hi , Welcome to the group! I dont often post but always read the different stories here and on the fmf groups, my daughter now is nearly 5yrs also has periodic fever, just like you I had to force myself and Olivia onto the doctor's and just like you we would be told its an ear-ach or viral infection, etc. After finely getting into Great ormond street hospital in London (Yes we live in the UK) we are now under a Prof. which takes us much more seriously, but although finding out Olivia has 'A type of periodic fever' they have yet to find out which one, however she is on colchicne and has been reacting to this, they (and myself) would have sworn it to be FMF but our Prof. that has been doing gene testing on Olivia's DNA has said although she has a gene mutation it was NOT that from FMF. Both the groups I belong to 'the ' I joined when I found out about Olivia's illness and the FMF group I joined when she started taking colchicine as this is what we all thought she could have as she responded to the drug 'it made sense to assume this'! They have all been very supportive and always offer good advise. I had to post as your story is so similar to my own and we wish you, your daughter Kaitlyn and your family well in your hunt for the right answer Regards Quote Link to comment Share on other sites More sharing options...
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