Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 Hi, My son Blake (4) has fevers every 23 days to the day. He is due to get sick on Sunday. I have been reading up on HID's. He has not yet been diagnosed with OR HID's, but the doctor is leaning towards . I noticed that your daughter gets stomach pains. Blake has complaining about his stomach this past month. Is the two similar where they are unsure if its one or the other? Mom to Blake (4) > > Good afternoon, > > > > I would like to apologize because my English is very bad and I hope that > > you will easily understand me. > > > > I am glad to have found your group because when the diagnostic have been > > done I used to feel lonely. > > > > I am French, I live in Paris with my husband and our 3 children. > > > > will be 6 years old in January and my twin little girls ( > > and Léa) are now 2 years old. > > > > During my pregnancy the Physicians told me that the girls were dizigotic > > but when they arrived, the doubt was coming because they were so > > similar. > > > > Léa and are born with the same weight (2.410 kg and 2.440 kg) and > > the same size (less than 0.5 cm of difference). > > > > There face is the same, the colour of their eyes and hair exactly the > > same … > > > > Unfortunately the hospital did not study the placenta as they should > > have done it. And I can only read that even if there are two bags in my > > stomach they can be monozygotic in more than 25% of times. > > > > More they grow more they are similar even if I try to do my best to make > > differences (they never bear the same clothes …) > > > > Unfortunately, in France it is prohibited to make genetic test to know > > if they are monozygotic or not (except on the day of birth). You can > > only do it if one of the two children has a serious disease. > > > > In January 2004 the two girls had a stomatitis with very high > > temperature (41° C). > > > > There were many aphta in all their mouse, tong, and throat. > > > > They suffer a lot during more than 3 days. Unfortunately, the > > pediatrician did not prescribe the right medicine immediately. > > > > 3 weeks later Léa had only very high fever more than 40° during 3 days > > and 3 nights. > > > > The pediatrician did not found anything else he said " the throat is > > pinkish but not really red " . > > > > It is very difficult to make the fever down. The antipyretic medicines > > are not efficient > > > > During the crisis she used to be very tired and she trembled all the > > night. > > > > After the crisis its face was very pale and she continues to be very > > tired during several days. She sleeps more during the rests. > > > > I feel that she needs 2 or 3 days to recuperate to be back to normal. > > > > 3 weeks later the same crisis appears. > > > > You will find here after the date of the crisis. At these dates she has > > only very high fever (more than 40°) she is tired but nothing else. > > > > As you can see Léa is currently hill all months but less. > > > > Even so, at EACH TIME Léa has 40° fever has also a little bit of > > fever but not so much. > > > > > > Léa > > > > > > 23-jan-04 > > > > > > 20-feb-04 > > > > > > 27-march-04 > > > > > > 23-april-04 > > > > > > 13-may-04 > > > > > > 13-june-04 > > > > > > 06-jully-04 > > 08-jully-04 > > > > 25-jully-04 > > 25-jully-04 > > > > 03-sept-04 > > > > > > 09-sept-04 > > 09-sept-04 > > > > At each crisis we have seen the pediatrician who says it is a " virus " . > > > > In February, I decided to ask for lab. test. > > > > They show only a CRP = inflammatory disease (sorry, I don't know to > > translate) very high. > > > > In June I said to the pediatrician that I want to know what makes my > > girls in such a bad condition. > > > > Between two crises they are healthy. My girls are full of life, very > > happy and dynamic. > > > > At this moment my pediatrician decided to call a specialist who talked > > about the Mediterranean fever. > > > > We made again urine and blood analysis, we made an abdominal scan, a > > pulmonary radio. > > > > Everything was normal except the CRP (inflammatory sign) which is very > > very high. > > > > After the crisis this CRP become normal. > > > > Léa received the genetic testing (TRAPS and another one) and we decided > > to give her the treatment (colchicine) for the Mediterranean fever > > (therapeutic test). > > > > I took this opportunity to ask for the twin genetic test. Which become > > positive: Léa and are monozygotic. > > > > At the end of the summer time we received the results of the > > Mediterranean fever which were negative. Then we stopped the treatment. > > > > During the 3 last crises we administrate her cortisone (CELESTENE). It > > seems like a miracle: the fever fall from 40° to 37° in one hour. > > > > On September 8 we met the specialist in France of the periodic fevers > > who said that they both suffer from the (in France we call it also > > " Syndrome de Marshall " ). > > > > Here is our story. > > > > The specialist told me that this disease will disappear before the 10 > > years old. Is that correct from your experience? > > > > He also said that they should suffer from abdominal and articular pains. > > > > Do all the children suffer from these pains? > > > > Does the prednisone bring relief on these pains? > > > > He told us about a second treatment: the cimetidine (TAGAMET) is that > > efficient? > > > > The last thing he talked about was the tonsillectomy. Shall we have a > > good recovery hope in case of tonsillectomy? > > > > There is no crisis since 6 weeks can this disease stop so " quickly " ? > > > > How do you manage the school absence due to this disease? Can your > > children have a normal time at school? > > > > Thanking you in advance for your help, and waiting to read you soon. > > > > > > ce > > aitzkowitch@9... > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 Hi, My son Blake (4) has fevers every 23 days to the day. He is due to get sick on Sunday. I have been reading up on HID's. He has not yet been diagnosed with OR HID's, but the doctor is leaning towards . I noticed that your daughter gets stomach pains. Blake has complaining about his stomach this past month. Is the two similar where they are unsure if its one or the other? Mom to Blake (4) > > Good afternoon, > > > > I would like to apologize because my English is very bad and I hope that > > you will easily understand me. > > > > I am glad to have found your group because when the diagnostic have been > > done I used to feel lonely. > > > > I am French, I live in Paris with my husband and our 3 children. > > > > will be 6 years old in January and my twin little girls ( > > and Léa) are now 2 years old. > > > > During my pregnancy the Physicians told me that the girls were dizigotic > > but when they arrived, the doubt was coming because they were so > > similar. > > > > Léa and are born with the same weight (2.410 kg and 2.440 kg) and > > the same size (less than 0.5 cm of difference). > > > > There face is the same, the colour of their eyes and hair exactly the > > same … > > > > Unfortunately the hospital did not study the placenta as they should > > have done it. And I can only read that even if there are two bags in my > > stomach they can be monozygotic in more than 25% of times. > > > > More they grow more they are similar even if I try to do my best to make > > differences (they never bear the same clothes …) > > > > Unfortunately, in France it is prohibited to make genetic test to know > > if they are monozygotic or not (except on the day of birth). You can > > only do it if one of the two children has a serious disease. > > > > In January 2004 the two girls had a stomatitis with very high > > temperature (41° C). > > > > There were many aphta in all their mouse, tong, and throat. > > > > They suffer a lot during more than 3 days. Unfortunately, the > > pediatrician did not prescribe the right medicine immediately. > > > > 3 weeks later Léa had only very high fever more than 40° during 3 days > > and 3 nights. > > > > The pediatrician did not found anything else he said " the throat is > > pinkish but not really red " . > > > > It is very difficult to make the fever down. The antipyretic medicines > > are not efficient > > > > During the crisis she used to be very tired and she trembled all the > > night. > > > > After the crisis its face was very pale and she continues to be very > > tired during several days. She sleeps more during the rests. > > > > I feel that she needs 2 or 3 days to recuperate to be back to normal. > > > > 3 weeks later the same crisis appears. > > > > You will find here after the date of the crisis. At these dates she has > > only very high fever (more than 40°) she is tired but nothing else. > > > > As you can see Léa is currently hill all months but less. > > > > Even so, at EACH TIME Léa has 40° fever has also a little bit of > > fever but not so much. > > > > > > Léa > > > > > > 23-jan-04 > > > > > > 20-feb-04 > > > > > > 27-march-04 > > > > > > 23-april-04 > > > > > > 13-may-04 > > > > > > 13-june-04 > > > > > > 06-jully-04 > > 08-jully-04 > > > > 25-jully-04 > > 25-jully-04 > > > > 03-sept-04 > > > > > > 09-sept-04 > > 09-sept-04 > > > > At each crisis we have seen the pediatrician who says it is a " virus " . > > > > In February, I decided to ask for lab. test. > > > > They show only a CRP = inflammatory disease (sorry, I don't know to > > translate) very high. > > > > In June I said to the pediatrician that I want to know what makes my > > girls in such a bad condition. > > > > Between two crises they are healthy. My girls are full of life, very > > happy and dynamic. > > > > At this moment my pediatrician decided to call a specialist who talked > > about the Mediterranean fever. > > > > We made again urine and blood analysis, we made an abdominal scan, a > > pulmonary radio. > > > > Everything was normal except the CRP (inflammatory sign) which is very > > very high. > > > > After the crisis this CRP become normal. > > > > Léa received the genetic testing (TRAPS and another one) and we decided > > to give her the treatment (colchicine) for the Mediterranean fever > > (therapeutic test). > > > > I took this opportunity to ask for the twin genetic test. Which become > > positive: Léa and are monozygotic. > > > > At the end of the summer time we received the results of the > > Mediterranean fever which were negative. Then we stopped the treatment. > > > > During the 3 last crises we administrate her cortisone (CELESTENE). It > > seems like a miracle: the fever fall from 40° to 37° in one hour. > > > > On September 8 we met the specialist in France of the periodic fevers > > who said that they both suffer from the (in France we call it also > > " Syndrome de Marshall " ). > > > > Here is our story. > > > > The specialist told me that this disease will disappear before the 10 > > years old. Is that correct from your experience? > > > > He also said that they should suffer from abdominal and articular pains. > > > > Do all the children suffer from these pains? > > > > Does the prednisone bring relief on these pains? > > > > He told us about a second treatment: the cimetidine (TAGAMET) is that > > efficient? > > > > The last thing he talked about was the tonsillectomy. Shall we have a > > good recovery hope in case of tonsillectomy? > > > > There is no crisis since 6 weeks can this disease stop so " quickly " ? > > > > How do you manage the school absence due to this disease? Can your > > children have a normal time at school? > > > > Thanking you in advance for your help, and waiting to read you soon. > > > > > > ce > > aitzkowitch@9... > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2004 Report Share Posted October 22, 2004 Hi , HIDs is not too easily mistaken for because they don't have too much in common except for the high fevers. HIDs inflamation typically hits the abdominal area so vomiting and diahrea in addition to stomach pain is the norm. Rashes, mouth ulcers, joint pain and a swollen spleen are additional possible symptoms. The tonsils are not involved as in . What symptoms does Blake have? Stomach pain is also part of FMF in addition to joint pain. Since each person presents differently, anything is possible. Keep researching and don't accept any diagnosis you are not comfortable with, > > > Good afternoon, > > > > > > I would like to apologize because my English is very bad and I > hope that > > > you will easily understand me. > > > > > > I am glad to have found your group because when the diagnostic > have been > > > done I used to feel lonely. > > > > > > I am French, I live in Paris with my husband and our 3 children. > > > > > > will be 6 years old in January and my twin little girls > ( > > > and Léa) are now 2 years old. > > > > > > During my pregnancy the Physicians told me that the girls were > dizigotic > > > but when they arrived, the doubt was coming because they were so > > > similar. > > > > > > Léa and are born with the same weight (2.410 kg and 2.440 > kg) and > > > the same size (less than 0.5 cm of difference). > > > > > > There face is the same, the colour of their eyes and hair > exactly the > > > same … > > > > > > Unfortunately the hospital did not study the placenta as they > should > > > have done it. And I can only read that even if there are two > bags in my > > > stomach they can be monozygotic in more than 25% of times. > > > > > > More they grow more they are similar even if I try to do my best > to make > > > differences (they never bear the same clothes …) > > > > > > Unfortunately, in France it is prohibited to make genetic test > to know > > > if they are monozygotic or not (except on the day of birth). You > can > > > only do it if one of the two children has a serious disease. > > > > > > In January 2004 the two girls had a stomatitis with very high > > > temperature (41° C). > > > > > > There were many aphta in all their mouse, tong, and throat. > > > > > > They suffer a lot during more than 3 days. Unfortunately, the > > > pediatrician did not prescribe the right medicine immediately. > > > > > > 3 weeks later Léa had only very high fever more than 40° during > 3 days > > > and 3 nights. > > > > > > The pediatrician did not found anything else he said " the throat > is > > > pinkish but not really red " . > > > > > > It is very difficult to make the fever down. The antipyretic > medicines > > > are not efficient > > > > > > During the crisis she used to be very tired and she trembled all > the > > > night. > > > > > > After the crisis its face was very pale and she continues to be > very > > > tired during several days. She sleeps more during the rests. > > > > > > I feel that she needs 2 or 3 days to recuperate to be back to > normal. > > > > > > 3 weeks later the same crisis appears. > > > > > > You will find here after the date of the crisis. At these dates > she has > > > only very high fever (more than 40°) she is tired but nothing > else. > > > > > > As you can see Léa is currently hill all months but less. > > > > > > Even so, at EACH TIME Léa has 40° fever has also a little > bit of > > > fever but not so much. > > > > > > > > > Léa > > > > > > > > > 23-jan-04 > > > > > > > > > 20-feb-04 > > > > > > > > > 27-march-04 > > > > > > > > > 23-april-04 > > > > > > > > > 13-may-04 > > > > > > > > > 13-june-04 > > > > > > > > > 06-jully-04 > > > 08-jully-04 > > > > > > 25-jully-04 > > > 25-jully-04 > > > > > > 03-sept-04 > > > > > > > > > 09-sept-04 > > > 09-sept-04 > > > > > > At each crisis we have seen the pediatrician who says it is > a " virus " . > > > > > > In February, I decided to ask for lab. test. > > > > > > They show only a CRP = inflammatory disease (sorry, I don't know > to > > > translate) very high. > > > > > > In June I said to the pediatrician that I want to know what > makes my > > > girls in such a bad condition. > > > > > > Between two crises they are healthy. My girls are full of life, > very > > > happy and dynamic. > > > > > > At this moment my pediatrician decided to call a specialist who > talked > > > about the Mediterranean fever. > > > > > > We made again urine and blood analysis, we made an abdominal > scan, a > > > pulmonary radio. > > > > > > Everything was normal except the CRP (inflammatory sign) which > is very > > > very high. > > > > > > After the crisis this CRP become normal. > > > > > > Léa received the genetic testing (TRAPS and another one) and we > decided > > > to give her the treatment (colchicine) for the Mediterranean > fever > > > (therapeutic test). > > > > > > I took this opportunity to ask for the twin genetic test. Which > become > > > positive: Léa and are monozygotic. > > > > > > At the end of the summer time we received the results of the > > > Mediterranean fever which were negative. Then we stopped the > treatment. > > > > > > During the 3 last crises we administrate her cortisone > (CELESTENE). It > > > seems like a miracle: the fever fall from 40° to 37° in one hour. > > > > > > On September 8 we met the specialist in France of the periodic > fevers > > > who said that they both suffer from the (in France we call > it also > > > " Syndrome de Marshall " ). > > > > > > Here is our story. > > > > > > The specialist told me that this disease will disappear before > the 10 > > > years old. Is that correct from your experience? > > > > > > He also said that they should suffer from abdominal and > articular pains. > > > > > > Do all the children suffer from these pains? > > > > > > Does the prednisone bring relief on these pains? > > > > > > He told us about a second treatment: the cimetidine (TAGAMET) is > that > > > efficient? > > > > > > The last thing he talked about was the tonsillectomy. Shall we > have a > > > good recovery hope in case of tonsillectomy? > > > > > > There is no crisis since 6 weeks can this disease stop > so " quickly " ? > > > > > > How do you manage the school absence due to this disease? Can > your > > > children have a normal time at school? > > > > > > Thanking you in advance for your help, and waiting to read you > soon. > > > > > > > > > ce > > > aitzkowitch@9... > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2004 Report Share Posted October 22, 2004 Hi , HIDs is not too easily mistaken for because they don't have too much in common except for the high fevers. HIDs inflamation typically hits the abdominal area so vomiting and diahrea in addition to stomach pain is the norm. Rashes, mouth ulcers, joint pain and a swollen spleen are additional possible symptoms. The tonsils are not involved as in . What symptoms does Blake have? Stomach pain is also part of FMF in addition to joint pain. Since each person presents differently, anything is possible. Keep researching and don't accept any diagnosis you are not comfortable with, > > > Good afternoon, > > > > > > I would like to apologize because my English is very bad and I > hope that > > > you will easily understand me. > > > > > > I am glad to have found your group because when the diagnostic > have been > > > done I used to feel lonely. > > > > > > I am French, I live in Paris with my husband and our 3 children. > > > > > > will be 6 years old in January and my twin little girls > ( > > > and Léa) are now 2 years old. > > > > > > During my pregnancy the Physicians told me that the girls were > dizigotic > > > but when they arrived, the doubt was coming because they were so > > > similar. > > > > > > Léa and are born with the same weight (2.410 kg and 2.440 > kg) and > > > the same size (less than 0.5 cm of difference). > > > > > > There face is the same, the colour of their eyes and hair > exactly the > > > same … > > > > > > Unfortunately the hospital did not study the placenta as they > should > > > have done it. And I can only read that even if there are two > bags in my > > > stomach they can be monozygotic in more than 25% of times. > > > > > > More they grow more they are similar even if I try to do my best > to make > > > differences (they never bear the same clothes …) > > > > > > Unfortunately, in France it is prohibited to make genetic test > to know > > > if they are monozygotic or not (except on the day of birth). You > can > > > only do it if one of the two children has a serious disease. > > > > > > In January 2004 the two girls had a stomatitis with very high > > > temperature (41° C). > > > > > > There were many aphta in all their mouse, tong, and throat. > > > > > > They suffer a lot during more than 3 days. Unfortunately, the > > > pediatrician did not prescribe the right medicine immediately. > > > > > > 3 weeks later Léa had only very high fever more than 40° during > 3 days > > > and 3 nights. > > > > > > The pediatrician did not found anything else he said " the throat > is > > > pinkish but not really red " . > > > > > > It is very difficult to make the fever down. The antipyretic > medicines > > > are not efficient > > > > > > During the crisis she used to be very tired and she trembled all > the > > > night. > > > > > > After the crisis its face was very pale and she continues to be > very > > > tired during several days. She sleeps more during the rests. > > > > > > I feel that she needs 2 or 3 days to recuperate to be back to > normal. > > > > > > 3 weeks later the same crisis appears. > > > > > > You will find here after the date of the crisis. At these dates > she has > > > only very high fever (more than 40°) she is tired but nothing > else. > > > > > > As you can see Léa is currently hill all months but less. > > > > > > Even so, at EACH TIME Léa has 40° fever has also a little > bit of > > > fever but not so much. > > > > > > > > > Léa > > > > > > > > > 23-jan-04 > > > > > > > > > 20-feb-04 > > > > > > > > > 27-march-04 > > > > > > > > > 23-april-04 > > > > > > > > > 13-may-04 > > > > > > > > > 13-june-04 > > > > > > > > > 06-jully-04 > > > 08-jully-04 > > > > > > 25-jully-04 > > > 25-jully-04 > > > > > > 03-sept-04 > > > > > > > > > 09-sept-04 > > > 09-sept-04 > > > > > > At each crisis we have seen the pediatrician who says it is > a " virus " . > > > > > > In February, I decided to ask for lab. test. > > > > > > They show only a CRP = inflammatory disease (sorry, I don't know > to > > > translate) very high. > > > > > > In June I said to the pediatrician that I want to know what > makes my > > > girls in such a bad condition. > > > > > > Between two crises they are healthy. My girls are full of life, > very > > > happy and dynamic. > > > > > > At this moment my pediatrician decided to call a specialist who > talked > > > about the Mediterranean fever. > > > > > > We made again urine and blood analysis, we made an abdominal > scan, a > > > pulmonary radio. > > > > > > Everything was normal except the CRP (inflammatory sign) which > is very > > > very high. > > > > > > After the crisis this CRP become normal. > > > > > > Léa received the genetic testing (TRAPS and another one) and we > decided > > > to give her the treatment (colchicine) for the Mediterranean > fever > > > (therapeutic test). > > > > > > I took this opportunity to ask for the twin genetic test. Which > become > > > positive: Léa and are monozygotic. > > > > > > At the end of the summer time we received the results of the > > > Mediterranean fever which were negative. Then we stopped the > treatment. > > > > > > During the 3 last crises we administrate her cortisone > (CELESTENE). It > > > seems like a miracle: the fever fall from 40° to 37° in one hour. > > > > > > On September 8 we met the specialist in France of the periodic > fevers > > > who said that they both suffer from the (in France we call > it also > > > " Syndrome de Marshall " ). > > > > > > Here is our story. > > > > > > The specialist told me that this disease will disappear before > the 10 > > > years old. Is that correct from your experience? > > > > > > He also said that they should suffer from abdominal and > articular pains. > > > > > > Do all the children suffer from these pains? > > > > > > Does the prednisone bring relief on these pains? > > > > > > He told us about a second treatment: the cimetidine (TAGAMET) is > that > > > efficient? > > > > > > The last thing he talked about was the tonsillectomy. Shall we > have a > > > good recovery hope in case of tonsillectomy? > > > > > > There is no crisis since 6 weeks can this disease stop > so " quickly " ? > > > > > > How do you manage the school absence due to this disease? Can > your > > > children have a normal time at school? > > > > > > Thanking you in advance for your help, and waiting to read you > soon. > > > > > > > > > ce > > > aitzkowitch@9... > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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