Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Marie, Welcome Your journey sounds similar to my son ph when he was an infant. ph too had very high temps and dehydrated... Initially the docs diagnosed him with pneumonia... without any symptoms of pneumonia... and virus'... I kept marking down his day of onset... and realized by the third episode the fevers were cyclic ... every 21 days. We were hospitilized the third fever episode... when he reached 106... and his WBC's were VERY high... as was his SED rate.... which led the ER doc and our pediatrician to spinal taps and MANY lab tests. Everything aside from WBC and Sed rate were normal. Again 3 weeks later we were admitted with 107... for 6 days.... They bombarded his tiny body with antibiotics IV and he DID end up with C-diff AFTER the episode was subsiding... He was even sicker with C-diff! The ID doc told me he thought ph might have a rarer fever disorder or something else and referred us to Shands in Gainesville Florida... We set up an appointment there as ph turned a year old... and ALL tests were repeated AND genetic studies were sent off... We were also transferred up to Gainesville which was about 5 hrs from our home... when he spiked his next temp and we were admitted there for 2 weeks. He was tested for everything from Parvo... to Epstein Barr to the genetic fever disorder as well as bone marrow for leukemia and another spinal tap... In the end everything was negative and we received a PROBABLE diagnosis.... ph is now 5 and we tried Prednisone which made his fevers come closer and closer so we stopped... (It works great on some kids... aborting the fever and NOT allowing the fevers to come sooner with just one dose) We tried Cimetidine for about 5 months and that did NOTHING... Cimetidine is alias for Tagamet and is given for about 4-6 months in the highest dose calculated by your child's weight.... twice a day... continuously! In some children it works over a period of time and stopping the fevers.... Lastly we tried removing his tonsils which is the last alternative and treatment for .... at that point ph's fevers spread some... and were coming about every 38 days.... Since they still come, but only every 2-3 months and last 4 days... and never go higher than 105... so he is much better... We are unsure if this is from the surgery effect or if he is continuing to improve on his own... Dehydration IS A COMMON problem with children like ours who get the fevers at a YOUNG age... The older ph got... the easier to get him to drink... or take Jell-O etc... The older they get they begin to understand the importance of drinking fluids... We have not visited an ER since ph was just about 3... so you do have something to look forward too!! By the way has your child been DNA tested? Browse the file section and read about the other disorders. God Bless, Fran Fran A Bulone Mom to ph 5 yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Marie, Welcome Your journey sounds similar to my son ph when he was an infant. ph too had very high temps and dehydrated... Initially the docs diagnosed him with pneumonia... without any symptoms of pneumonia... and virus'... I kept marking down his day of onset... and realized by the third episode the fevers were cyclic ... every 21 days. We were hospitilized the third fever episode... when he reached 106... and his WBC's were VERY high... as was his SED rate.... which led the ER doc and our pediatrician to spinal taps and MANY lab tests. Everything aside from WBC and Sed rate were normal. Again 3 weeks later we were admitted with 107... for 6 days.... They bombarded his tiny body with antibiotics IV and he DID end up with C-diff AFTER the episode was subsiding... He was even sicker with C-diff! The ID doc told me he thought ph might have a rarer fever disorder or something else and referred us to Shands in Gainesville Florida... We set up an appointment there as ph turned a year old... and ALL tests were repeated AND genetic studies were sent off... We were also transferred up to Gainesville which was about 5 hrs from our home... when he spiked his next temp and we were admitted there for 2 weeks. He was tested for everything from Parvo... to Epstein Barr to the genetic fever disorder as well as bone marrow for leukemia and another spinal tap... In the end everything was negative and we received a PROBABLE diagnosis.... ph is now 5 and we tried Prednisone which made his fevers come closer and closer so we stopped... (It works great on some kids... aborting the fever and NOT allowing the fevers to come sooner with just one dose) We tried Cimetidine for about 5 months and that did NOTHING... Cimetidine is alias for Tagamet and is given for about 4-6 months in the highest dose calculated by your child's weight.... twice a day... continuously! In some children it works over a period of time and stopping the fevers.... Lastly we tried removing his tonsils which is the last alternative and treatment for .... at that point ph's fevers spread some... and were coming about every 38 days.... Since they still come, but only every 2-3 months and last 4 days... and never go higher than 105... so he is much better... We are unsure if this is from the surgery effect or if he is continuing to improve on his own... Dehydration IS A COMMON problem with children like ours who get the fevers at a YOUNG age... The older ph got... the easier to get him to drink... or take Jell-O etc... The older they get they begin to understand the importance of drinking fluids... We have not visited an ER since ph was just about 3... so you do have something to look forward too!! By the way has your child been DNA tested? Browse the file section and read about the other disorders. God Bless, Fran Fran A Bulone Mom to ph 5 yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Wow! Sounds exactly like my son. No he has not been DNA tested. How is this done? What can be told by it? Is there any doctors in Texas that are a specialist to ? and is it a syndrome or disease? Oh and how do you explain to others what he has? I mean when I told my pediatrician office what they said he had they asked me to please spell it out. Ha! I said okay got a big piece of paper. I still get tongue tied on the name. I think the topic on munchosin(however you spell it) and pychosomatic illness were interestign because when he is not having fever he is normal. He is even on the chubby side. It scares the nurses in the hospital to see him go from bouncing in crib chewing on IV tubes and grabbing at their badges to laying so still and so weak he doesn't even fight or whimper when they do an anal temp. I have seen one lab tech and nurse cry. Its just so hard when they have to stick him over and over again to try to find a vein. The thing I keep hearing from people when I tell them how high his fever is they say " Shouldn't he be dead or does he have brain damage " I just say not yet. People can be cruel but I think it just stuns people to knwo fevers can get that high. I remember his 2nd cycle a nurse came in teh room and said his fever was 103. I said Great! she gave me the dirtiest look. I told her he had been having 106 and and 103 meant it was going down. She them understood. My son also does something weird. When his cycle is almost over he start to run low temps 95 - 97 degrees. I wonder if it is his body or just because the room is cool. Anyone else seen this? Marie > Marie, > Welcome > Your journey sounds similar to my son ph when he was an infant. > ph too had very high temps and dehydrated... > > Initially the docs diagnosed him with pneumonia... without any symptoms of > pneumonia... and virus'... > I kept marking down his day of onset... and realized by the third episode > the fevers were cyclic ... every 21 days. > > We were hospitilized the third fever episode... when he reached 106... and > his WBC's were VERY high... as was his SED rate.... which led the ER doc and > our pediatrician to spinal taps and MANY lab tests. > > Everything aside from WBC and Sed rate were normal. > > Again 3 weeks later we were admitted with 107... for 6 days.... They > bombarded his tiny body with antibiotics IV and he DID end up with C-diff > AFTER the episode was subsiding... He was even sicker with C-diff! > > The ID doc told me he thought ph might have a rarer fever disorder or > something else and referred us to Shands in Gainesville Florida... We set up > an appointment there as ph turned a year old... and ALL tests were > repeated AND genetic studies were sent off... We were also transferred up to > Gainesville which was about 5 hrs from our home... when he spiked his next > temp and we were admitted there for 2 weeks. > > He was tested for everything from Parvo... to Epstein Barr to the genetic > fever disorder as well as bone marrow for leukemia and another spinal tap... > > In the end everything was negative and we received a PROBABLE > diagnosis.... > > ph is now 5 and we tried Prednisone which made his fevers come closer > and closer so we stopped... (It works great on some kids... aborting the > fever and NOT allowing the fevers to come sooner with just one dose) > > We tried Cimetidine for about 5 months and that did NOTHING... Cimetidine is > alias for Tagamet and is given for about 4-6 months in the highest dose > calculated by your child's weight.... twice a day... continuously! In some > children it works over a period of time and stopping the fevers.... > Lastly we tried removing his tonsils which is the last alternative and > treatment for .... at that point ph's fevers spread some... and > were coming about every 38 days.... Since they still come, but only every > 2-3 months and last 4 days... and never go higher than 105... so he is much > better... We are unsure if this is from the surgery effect or if he is > continuing to improve on his own... > > Dehydration IS A COMMON problem with children like ours who get the fevers > at a YOUNG age... The older ph got... the easier to get him to drink... > or take Jell-O etc... The older they get they begin to understand the > importance of drinking fluids... > > We have not visited an ER since ph was just about 3... so you do have > something to look forward too!! > > By the way has your child been DNA tested? > Browse the file section and read about the other disorders. > God Bless, > Fran > Fran A Bulone > Mom to ph 5 yrs old > Waxhaw, NC > > Owner & Moderator Group > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2004 Report Share Posted August 23, 2004 Wow! Sounds exactly like my son. No he has not been DNA tested. How is this done? What can be told by it? Is there any doctors in Texas that are a specialist to ? and is it a syndrome or disease? Oh and how do you explain to others what he has? I mean when I told my pediatrician office what they said he had they asked me to please spell it out. Ha! I said okay got a big piece of paper. I still get tongue tied on the name. I think the topic on munchosin(however you spell it) and pychosomatic illness were interestign because when he is not having fever he is normal. He is even on the chubby side. It scares the nurses in the hospital to see him go from bouncing in crib chewing on IV tubes and grabbing at their badges to laying so still and so weak he doesn't even fight or whimper when they do an anal temp. I have seen one lab tech and nurse cry. Its just so hard when they have to stick him over and over again to try to find a vein. The thing I keep hearing from people when I tell them how high his fever is they say " Shouldn't he be dead or does he have brain damage " I just say not yet. People can be cruel but I think it just stuns people to knwo fevers can get that high. I remember his 2nd cycle a nurse came in teh room and said his fever was 103. I said Great! she gave me the dirtiest look. I told her he had been having 106 and and 103 meant it was going down. She them understood. My son also does something weird. When his cycle is almost over he start to run low temps 95 - 97 degrees. I wonder if it is his body or just because the room is cool. Anyone else seen this? Marie > Marie, > Welcome > Your journey sounds similar to my son ph when he was an infant. > ph too had very high temps and dehydrated... > > Initially the docs diagnosed him with pneumonia... without any symptoms of > pneumonia... and virus'... > I kept marking down his day of onset... and realized by the third episode > the fevers were cyclic ... every 21 days. > > We were hospitilized the third fever episode... when he reached 106... and > his WBC's were VERY high... as was his SED rate.... which led the ER doc and > our pediatrician to spinal taps and MANY lab tests. > > Everything aside from WBC and Sed rate were normal. > > Again 3 weeks later we were admitted with 107... for 6 days.... They > bombarded his tiny body with antibiotics IV and he DID end up with C-diff > AFTER the episode was subsiding... He was even sicker with C-diff! > > The ID doc told me he thought ph might have a rarer fever disorder or > something else and referred us to Shands in Gainesville Florida... We set up > an appointment there as ph turned a year old... and ALL tests were > repeated AND genetic studies were sent off... We were also transferred up to > Gainesville which was about 5 hrs from our home... when he spiked his next > temp and we were admitted there for 2 weeks. > > He was tested for everything from Parvo... to Epstein Barr to the genetic > fever disorder as well as bone marrow for leukemia and another spinal tap... > > In the end everything was negative and we received a PROBABLE > diagnosis.... > > ph is now 5 and we tried Prednisone which made his fevers come closer > and closer so we stopped... (It works great on some kids... aborting the > fever and NOT allowing the fevers to come sooner with just one dose) > > We tried Cimetidine for about 5 months and that did NOTHING... Cimetidine is > alias for Tagamet and is given for about 4-6 months in the highest dose > calculated by your child's weight.... twice a day... continuously! In some > children it works over a period of time and stopping the fevers.... > Lastly we tried removing his tonsils which is the last alternative and > treatment for .... at that point ph's fevers spread some... and > were coming about every 38 days.... Since they still come, but only every > 2-3 months and last 4 days... and never go higher than 105... so he is much > better... We are unsure if this is from the surgery effect or if he is > continuing to improve on his own... > > Dehydration IS A COMMON problem with children like ours who get the fevers > at a YOUNG age... The older ph got... the easier to get him to drink... > or take Jell-O etc... The older they get they begin to understand the > importance of drinking fluids... > > We have not visited an ER since ph was just about 3... so you do have > something to look forward too!! > > By the way has your child been DNA tested? > Browse the file section and read about the other disorders. > God Bless, > Fran > Fran A Bulone > Mom to ph 5 yrs old > Waxhaw, NC > > Owner & Moderator Group > > > > Quote Link to comment Share on other sites More sharing options...
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