Guest guest Posted September 15, 2004 Report Share Posted September 15, 2004 I always feel like I'm waiting for it. Waiting for the next thing to happen. My daughter is pretty regular at 32-35 days but occasionaly she skipped a month or gone closer at 18 days. The " skipping " a month always makes me think it's over, but then it comes back. Maddie had her tonsils out in August and should have had her fever by now. So far so good. No fever yet, but we have not getting excited about it YET. She did have leg pain and was unusually whiny during the expected fever time, but that was it. So we'll see how it goes from here. Good luck, maybe this is a " skipped " month for you. I hope your birthday party goes well and fever free. Tracey mom to Maddie, age 5 & Brent, age 9 League city, TX On Tuesday, September 14, 2004, at 11:40 PM, The Kauffmans wrote: > Hey everyone, I posted a couple of weeks ago regarding whether your > kids > fevers come at regular intervals. We haven't been diagnosed > " officially " > with the cyclic neutropenia but that is our doctor's suspicion. > Dillon's > fever should have come last week if it was following the same schedule > it > has for the last six months......could the last six months of fevers > be just > a coincidence? I'm having a hard time believing that his last six > months of > illness just happened to fall within the same 6-7 week period but now > that > we just passed week 7 I'm starting to doubt that this diagnosis is > going to > be accurate. Is it possible that he could skip a cycle? Dillon's 2nd > birthday is Saturday and I've scheduled his party for that > day....somehow I > wonder if it will strike on Saturday.....I'm just babbling here but > this is > really bothering me and I'm not sure what to expect, or when to expect > it....I just keep hoping we can just get it over with so we can move > on with > the rest of the month. Do you ever feel like you are hovering in mid > air > just waiting to hit the ground (splat)?! > > > Dillon, Age (almost) 2 > Denton, Texas > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2004 Report Share Posted September 15, 2004 I always feel like I'm waiting for it. Waiting for the next thing to happen. My daughter is pretty regular at 32-35 days but occasionaly she skipped a month or gone closer at 18 days. The " skipping " a month always makes me think it's over, but then it comes back. Maddie had her tonsils out in August and should have had her fever by now. So far so good. No fever yet, but we have not getting excited about it YET. She did have leg pain and was unusually whiny during the expected fever time, but that was it. So we'll see how it goes from here. Good luck, maybe this is a " skipped " month for you. I hope your birthday party goes well and fever free. Tracey mom to Maddie, age 5 & Brent, age 9 League city, TX On Tuesday, September 14, 2004, at 11:40 PM, The Kauffmans wrote: > Hey everyone, I posted a couple of weeks ago regarding whether your > kids > fevers come at regular intervals. We haven't been diagnosed > " officially " > with the cyclic neutropenia but that is our doctor's suspicion. > Dillon's > fever should have come last week if it was following the same schedule > it > has for the last six months......could the last six months of fevers > be just > a coincidence? I'm having a hard time believing that his last six > months of > illness just happened to fall within the same 6-7 week period but now > that > we just passed week 7 I'm starting to doubt that this diagnosis is > going to > be accurate. Is it possible that he could skip a cycle? Dillon's 2nd > birthday is Saturday and I've scheduled his party for that > day....somehow I > wonder if it will strike on Saturday.....I'm just babbling here but > this is > really bothering me and I'm not sure what to expect, or when to expect > it....I just keep hoping we can just get it over with so we can move > on with > the rest of the month. Do you ever feel like you are hovering in mid > air > just waiting to hit the ground (splat)?! > > > Dillon, Age (almost) 2 > Denton, Texas > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2004 Report Share Posted September 15, 2004 s fevers had been coming every 16-17 days like clock work for the last 5 months. I fully expected him to be sick over labor day weekend but he wasn't. I had hoped that was the end of it but one week later he became sick. His symptoms were a little bit different this time. Low grade fever Thursday and Friday, 103.5 on all day Saturday. He still had the headache but not as bad. No mouth sores but this time he complained that his eyes hurt. This was a first for him. Good luck Surma mom to Tyler and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2004 Report Share Posted September 15, 2004 s fevers had been coming every 16-17 days like clock work for the last 5 months. I fully expected him to be sick over labor day weekend but he wasn't. I had hoped that was the end of it but one week later he became sick. His symptoms were a little bit different this time. Low grade fever Thursday and Friday, 103.5 on all day Saturday. He still had the headache but not as bad. No mouth sores but this time he complained that his eyes hurt. This was a first for him. Good luck Surma mom to Tyler and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2004 Report Share Posted September 15, 2004 , I frequently feel like I live my life waiting for fevers. And then plan my life around them! Just when I think I have the cycle figured out, it changes. Drew was every 28-30 days like clockwork initially, once we started prednisone over a year ago it went to 6 weeks for awhile, then 4 again, then 2 weeks for a few months, then 10 days (then we stopped the prednisone) and since then it has been kind of irregular. He just had his tonsillectomy 2 weeks ago, so I'm hoping we're one of the lucky ones.... Good luck! mom to Drew, age 2 1/2 town, RI > Hey everyone, I posted a couple of weeks ago regarding whether your kids > fevers come at regular intervals. We haven't been diagnosed " officially " > with the cyclic neutropenia but that is our doctor's suspicion. Dillon's > fever should have come last week if it was following the same schedule it > has for the last six months......could the last six months of fevers be just > a coincidence? I'm having a hard time believing that his last six months of > illness just happened to fall within the same 6-7 week period but now that > we just passed week 7 I'm starting to doubt that this diagnosis is going to > be accurate. Is it possible that he could skip a cycle? Dillon's 2nd > birthday is Saturday and I've scheduled his party for that day....somehow I > wonder if it will strike on Saturday.....I'm just babbling here but this is > really bothering me and I'm not sure what to expect, or when to expect > it....I just keep hoping we can just get it over with so we can move on with > the rest of the month. Do you ever feel like you are hovering in mid air > just waiting to hit the ground (splat)?! > > > Dillon, Age (almost) 2 > Denton, Texas > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2004 Report Share Posted September 15, 2004 , I frequently feel like I live my life waiting for fevers. And then plan my life around them! Just when I think I have the cycle figured out, it changes. Drew was every 28-30 days like clockwork initially, once we started prednisone over a year ago it went to 6 weeks for awhile, then 4 again, then 2 weeks for a few months, then 10 days (then we stopped the prednisone) and since then it has been kind of irregular. He just had his tonsillectomy 2 weeks ago, so I'm hoping we're one of the lucky ones.... Good luck! mom to Drew, age 2 1/2 town, RI > Hey everyone, I posted a couple of weeks ago regarding whether your kids > fevers come at regular intervals. We haven't been diagnosed " officially " > with the cyclic neutropenia but that is our doctor's suspicion. Dillon's > fever should have come last week if it was following the same schedule it > has for the last six months......could the last six months of fevers be just > a coincidence? I'm having a hard time believing that his last six months of > illness just happened to fall within the same 6-7 week period but now that > we just passed week 7 I'm starting to doubt that this diagnosis is going to > be accurate. Is it possible that he could skip a cycle? Dillon's 2nd > birthday is Saturday and I've scheduled his party for that day....somehow I > wonder if it will strike on Saturday.....I'm just babbling here but this is > really bothering me and I'm not sure what to expect, or when to expect > it....I just keep hoping we can just get it over with so we can move on with > the rest of the month. Do you ever feel like you are hovering in mid air > just waiting to hit the ground (splat)?! > > > Dillon, Age (almost) 2 > Denton, Texas > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2004 Report Share Posted September 15, 2004 Hi , I don't want to sound like an expert, because I definately have lots to learn myself! But, my daughter who is going to be 7 next month has been getting her fevers since she was about 10 months. I will tell you what I have seen in my child, and again, I am not an expert, but in my child's case her " cycles " are 4-6 weeks, but sometimes they are closer. In some instances, we have gone as long as 3 to 4 months, although that was rare. What I have learned however and this may or may not be chance is that certain events ie. birthdays, christmas, etc.. can trigger an event for us. My daughter has religiously had a fever on at least 3 consecutive birthdays (3, 4, 5,) so last year I didn't remind her of her birthday party until the night before she went to bed, beacause right or wrong, my doctor said that " stress " or " excessive " excitment can trigger an episode. Fran what do you think of this theory? Also, I was under the impression that neutropenia referred to a low white blood count. So your child may just have . Anyways, I babled so I don't know how much that helped.... Azzie Mother to Kianna almost 7! California The Kauffmans <kchrisk@...> wrote: Hey everyone, I posted a couple of weeks ago regarding whether your kids fevers come at regular intervals. We haven't been diagnosed " officially " with the cyclic neutropenia but that is our doctor's suspicion. Dillon's fever should have come last week if it was following the same schedule it has for the last six months......could the last six months of fevers be just a coincidence? I'm having a hard time believing that his last six months of illness just happened to fall within the same 6-7 week period but now that we just passed week 7 I'm starting to doubt that this diagnosis is going to be accurate. Is it possible that he could skip a cycle? Dillon's 2nd birthday is Saturday and I've scheduled his party for that day....somehow I wonder if it will strike on Saturday.....I'm just babbling here but this is really bothering me and I'm not sure what to expect, or when to expect it....I just keep hoping we can just get it over with so we can move on with the rest of the month. Do you ever feel like you are hovering in mid air just waiting to hit the ground (splat)?! Dillon, Age (almost) 2 Denton, Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2004 Report Share Posted September 15, 2004 Hi , I don't want to sound like an expert, because I definately have lots to learn myself! But, my daughter who is going to be 7 next month has been getting her fevers since she was about 10 months. I will tell you what I have seen in my child, and again, I am not an expert, but in my child's case her " cycles " are 4-6 weeks, but sometimes they are closer. In some instances, we have gone as long as 3 to 4 months, although that was rare. What I have learned however and this may or may not be chance is that certain events ie. birthdays, christmas, etc.. can trigger an event for us. My daughter has religiously had a fever on at least 3 consecutive birthdays (3, 4, 5,) so last year I didn't remind her of her birthday party until the night before she went to bed, beacause right or wrong, my doctor said that " stress " or " excessive " excitment can trigger an episode. Fran what do you think of this theory? Also, I was under the impression that neutropenia referred to a low white blood count. So your child may just have . Anyways, I babled so I don't know how much that helped.... Azzie Mother to Kianna almost 7! California The Kauffmans <kchrisk@...> wrote: Hey everyone, I posted a couple of weeks ago regarding whether your kids fevers come at regular intervals. We haven't been diagnosed " officially " with the cyclic neutropenia but that is our doctor's suspicion. Dillon's fever should have come last week if it was following the same schedule it has for the last six months......could the last six months of fevers be just a coincidence? I'm having a hard time believing that his last six months of illness just happened to fall within the same 6-7 week period but now that we just passed week 7 I'm starting to doubt that this diagnosis is going to be accurate. Is it possible that he could skip a cycle? Dillon's 2nd birthday is Saturday and I've scheduled his party for that day....somehow I wonder if it will strike on Saturday.....I'm just babbling here but this is really bothering me and I'm not sure what to expect, or when to expect it....I just keep hoping we can just get it over with so we can move on with the rest of the month. Do you ever feel like you are hovering in mid air just waiting to hit the ground (splat)?! Dillon, Age (almost) 2 Denton, Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2004 Report Share Posted September 15, 2004 Dillon's doctor does suspect cyclic neutropenia because his white blood cell count was low with his last fever (the first fever we tested it with). I'm frustrated because we can't get a firm diagnosis to get referred to a specialist until the next fever. He wants to test him again with his next fever. I know I should be thankful that the fever has not come this month but I would just like to go ahead an get it over with! Oh well... Thanks everyone for your input on this...its nice to know I'm not alone in my frustration. Re: Still waiting Hi , I don't want to sound like an expert, because I definately have lots to learn myself! But, my daughter who is going to be 7 next month has been getting her fevers since she was about 10 months. I will tell you what I have seen in my child, and again, I am not an expert, but in my child's case her " cycles " are 4-6 weeks, but sometimes they are closer. In some instances, we have gone as long as 3 to 4 months, although that was rare. What I have learned however and this may or may not be chance is that certain events ie. birthdays, christmas, etc.. can trigger an event for us. My daughter has religiously had a fever on at least 3 consecutive birthdays (3, 4, 5,) so last year I didn't remind her of her birthday party until the night before she went to bed, beacause right or wrong, my doctor said that " stress " or " excessive " excitment can trigger an episode. Fran what do you think of this theory? Also, I was under the impression that neutropenia referred to a low white blood count. So your child may just have . Anyways, I babled so I don't know how much that helped.... Azzie Mother to Kianna almost 7! California The Kauffmans <kchrisk@...> wrote: Hey everyone, I posted a couple of weeks ago regarding whether your kids fevers come at regular intervals. We haven't been diagnosed " officially " with the cyclic neutropenia but that is our doctor's suspicion. Dillon's fever should have come last week if it was following the same schedule it has for the last six months......could the last six months of fevers be just a coincidence? I'm having a hard time believing that his last six months of illness just happened to fall within the same 6-7 week period but now that we just passed week 7 I'm starting to doubt that this diagnosis is going to be accurate. Is it possible that he could skip a cycle? Dillon's 2nd birthday is Saturday and I've scheduled his party for that day....somehow I wonder if it will strike on Saturday.....I'm just babbling here but this is really bothering me and I'm not sure what to expect, or when to expect it....I just keep hoping we can just get it over with so we can move on with the rest of the month. Do you ever feel like you are hovering in mid air just waiting to hit the ground (splat)?! Dillon, Age (almost) 2 Denton, Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2004 Report Share Posted September 15, 2004 Dillon's doctor does suspect cyclic neutropenia because his white blood cell count was low with his last fever (the first fever we tested it with). I'm frustrated because we can't get a firm diagnosis to get referred to a specialist until the next fever. He wants to test him again with his next fever. I know I should be thankful that the fever has not come this month but I would just like to go ahead an get it over with! Oh well... Thanks everyone for your input on this...its nice to know I'm not alone in my frustration. Re: Still waiting Hi , I don't want to sound like an expert, because I definately have lots to learn myself! But, my daughter who is going to be 7 next month has been getting her fevers since she was about 10 months. I will tell you what I have seen in my child, and again, I am not an expert, but in my child's case her " cycles " are 4-6 weeks, but sometimes they are closer. In some instances, we have gone as long as 3 to 4 months, although that was rare. What I have learned however and this may or may not be chance is that certain events ie. birthdays, christmas, etc.. can trigger an event for us. My daughter has religiously had a fever on at least 3 consecutive birthdays (3, 4, 5,) so last year I didn't remind her of her birthday party until the night before she went to bed, beacause right or wrong, my doctor said that " stress " or " excessive " excitment can trigger an episode. Fran what do you think of this theory? Also, I was under the impression that neutropenia referred to a low white blood count. So your child may just have . Anyways, I babled so I don't know how much that helped.... Azzie Mother to Kianna almost 7! California The Kauffmans <kchrisk@...> wrote: Hey everyone, I posted a couple of weeks ago regarding whether your kids fevers come at regular intervals. We haven't been diagnosed " officially " with the cyclic neutropenia but that is our doctor's suspicion. Dillon's fever should have come last week if it was following the same schedule it has for the last six months......could the last six months of fevers be just a coincidence? I'm having a hard time believing that his last six months of illness just happened to fall within the same 6-7 week period but now that we just passed week 7 I'm starting to doubt that this diagnosis is going to be accurate. Is it possible that he could skip a cycle? Dillon's 2nd birthday is Saturday and I've scheduled his party for that day....somehow I wonder if it will strike on Saturday.....I'm just babbling here but this is really bothering me and I'm not sure what to expect, or when to expect it....I just keep hoping we can just get it over with so we can move on with the rest of the month. Do you ever feel like you are hovering in mid air just waiting to hit the ground (splat)?! Dillon, Age (almost) 2 Denton, Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2004 Report Share Posted September 16, 2004 - you are in Denton right? How hard would it be for you to come to Medical City? We have a great hematologist who just tested Caden for cyclic neutropenia (blood draws 2-3 x's per week for 6 weeks). You can do the draws at a local lab with an order. It sounds horrible but we got Caden some Emla cream (numbs the skin) and he didn't even feel the needle! Dr. Stanton Goldman Pediatric Hematologist/ Oncologist (no, cylic neutropenia has nothing to do with cancer!) 972-566-6647 Oh and BTW - Caden does NOT have cyclic neutropenia! -- L. s shelleyluan@... (214) 223-7008 Coppell, TX --------- Re: Still waiting > > > Hi , > I don't want to sound like an expert, because I definately have lots to > learn myself! But, my daughter who is going to be 7 next month has been > getting her fevers since she was about 10 months. I will tell you what I > have seen in my child, and again, I am not an expert, but in my child's case > her " cycles " are 4-6 weeks, but sometimes they are closer. In some > instances, we have gone as long as 3 to 4 months, although that was rare. > What I have learned however and this may or may not be chance is that > certain events ie. birthdays, christmas, etc.. can trigger an event for us. > My daughter has religiously had a fever on at least 3 consecutive birthdays > (3, 4, 5,) so last year I didn't remind her of her birthday party until the > night before she went to bed, beacause right or wrong, my doctor said that > " stress " or " excessive " excitment can trigger an episode. Fran what do you > think of this theory? > > Also, I was under the impression that neutropenia referred to a low white > blood count. So your child may just have . Anyways, I babled so I > don't know how much that helped.... > > Azzie > Mother to Kianna almost 7! > California > > The Kauffmans wrote: > Hey everyone, I posted a couple of weeks ago regarding whether your kids > fevers come at regular intervals. We haven't been diagnosed " officially " > with the cyclic neutropenia but that is our doctor's suspicion. Dillon's > fever should have come last week if it was following the same schedule it > has for the last six months......could the last six months of fevers be > just > a coincidence? I'm having a hard time believing that his last six months > of > illness just happened to fall within the same 6-7 week period but now that > we just passed week 7 I'm starting to doubt that this diagnosis is going > to > be accurate. Is it possible that he could skip a cycle? Dillon's 2nd > birthday is Saturday and I've scheduled his party for that day....somehow > I > wonder if it will strike on Saturday.....I'm just babbling here but this > is > really bothering me and I'm not sure what to expect, or when to expect > it....I just keep hoping we can just get it over with so we can move on > with > the rest of the month. Do you ever feel like you are hovering in mid air > just waiting to hit the ground (splat)?! > > > Dillon, Age (almost) 2 > Denton, Texas > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2004 Report Share Posted September 16, 2004 - you are in Denton right? How hard would it be for you to come to Medical City? We have a great hematologist who just tested Caden for cyclic neutropenia (blood draws 2-3 x's per week for 6 weeks). You can do the draws at a local lab with an order. It sounds horrible but we got Caden some Emla cream (numbs the skin) and he didn't even feel the needle! Dr. Stanton Goldman Pediatric Hematologist/ Oncologist (no, cylic neutropenia has nothing to do with cancer!) 972-566-6647 Oh and BTW - Caden does NOT have cyclic neutropenia! -- L. s shelleyluan@... (214) 223-7008 Coppell, TX --------- Re: Still waiting > > > Hi , > I don't want to sound like an expert, because I definately have lots to > learn myself! But, my daughter who is going to be 7 next month has been > getting her fevers since she was about 10 months. I will tell you what I > have seen in my child, and again, I am not an expert, but in my child's case > her " cycles " are 4-6 weeks, but sometimes they are closer. In some > instances, we have gone as long as 3 to 4 months, although that was rare. > What I have learned however and this may or may not be chance is that > certain events ie. birthdays, christmas, etc.. can trigger an event for us. > My daughter has religiously had a fever on at least 3 consecutive birthdays > (3, 4, 5,) so last year I didn't remind her of her birthday party until the > night before she went to bed, beacause right or wrong, my doctor said that > " stress " or " excessive " excitment can trigger an episode. Fran what do you > think of this theory? > > Also, I was under the impression that neutropenia referred to a low white > blood count. So your child may just have . Anyways, I babled so I > don't know how much that helped.... > > Azzie > Mother to Kianna almost 7! > California > > The Kauffmans wrote: > Hey everyone, I posted a couple of weeks ago regarding whether your kids > fevers come at regular intervals. We haven't been diagnosed " officially " > with the cyclic neutropenia but that is our doctor's suspicion. Dillon's > fever should have come last week if it was following the same schedule it > has for the last six months......could the last six months of fevers be > just > a coincidence? I'm having a hard time believing that his last six months > of > illness just happened to fall within the same 6-7 week period but now that > we just passed week 7 I'm starting to doubt that this diagnosis is going > to > be accurate. Is it possible that he could skip a cycle? Dillon's 2nd > birthday is Saturday and I've scheduled his party for that day....somehow > I > wonder if it will strike on Saturday.....I'm just babbling here but this > is > really bothering me and I'm not sure what to expect, or when to expect > it....I just keep hoping we can just get it over with so we can move on > with > the rest of the month. Do you ever feel like you are hovering in mid air > just waiting to hit the ground (splat)?! > > > Dillon, Age (almost) 2 > Denton, Texas > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2004 Report Share Posted September 16, 2004 Can they test for it even when he isn't running a fever? With his last fever cycle Dr. Goff (his pediatrician) tested him on the 3rd day of his fever, the 5th day of his fever and then the day after his fever abated. I didn't know if they had to have a fever cycle to compare it to...and since it doesn't appear that Dillon's fever is coming at any sort of a regular interval this month I'm not sure when it will be back (or if it will be back!). His last fever was followed up by a rash which made us wonder if he had Roseolla. Our pediatrician said that if he did it might explain the low neutrophil count because apparently Roseolla can do that too. That has just made it more difficult to pin this down. I might call this guy and see if he can at least answer some questions for us! Thanks for the info. Dillon, Age (almost) 2 Denton, Texas RE: Still waiting - you are in Denton right? How hard would it be for you to come to Medical City? We have a great hematologist who just tested Caden for cyclic neutropenia (blood draws 2-3 x's per week for 6 weeks). You can do the draws at a local lab with an order. It sounds horrible but we got Caden some Emla cream (numbs the skin) and he didn't even feel the needle! Dr. Stanton Goldman Pediatric Hematologist/ Oncologist (no, cylic neutropenia has nothing to do with cancer!) 972-566-6647 Oh and BTW - Caden does NOT have cyclic neutropenia! -- L. s shelleyluan@... (214) 223-7008 Coppell, TX --------- Re: Still waiting > > > Hi , > I don't want to sound like an expert, because I definately have lots to > learn myself! But, my daughter who is going to be 7 next month has been > getting her fevers since she was about 10 months. I will tell you what I > have seen in my child, and again, I am not an expert, but in my child's case > her " cycles " are 4-6 weeks, but sometimes they are closer. In some > instances, we have gone as long as 3 to 4 months, although that was rare. > What I have learned however and this may or may not be chance is that > certain events ie. birthdays, christmas, etc.. can trigger an event for us. > My daughter has religiously had a fever on at least 3 consecutive birthdays > (3, 4, 5,) so last year I didn't remind her of her birthday party until the > night before she went to bed, beacause right or wrong, my doctor said that > " stress " or " excessive " excitment can trigger an episode. Fran what do you > think of this theory? > > Also, I was under the impression that neutropenia referred to a low white > blood count. So your child may just have . Anyways, I babled so I > don't know how much that helped.... > > Azzie > Mother to Kianna almost 7! > California > > The Kauffmans wrote: > Hey everyone, I posted a couple of weeks ago regarding whether your kids > fevers come at regular intervals. We haven't been diagnosed " officially " > with the cyclic neutropenia but that is our doctor's suspicion. Dillon's > fever should have come last week if it was following the same schedule it > has for the last six months......could the last six months of fevers be > just > a coincidence? I'm having a hard time believing that his last six months > of > illness just happened to fall within the same 6-7 week period but now that > we just passed week 7 I'm starting to doubt that this diagnosis is going > to > be accurate. Is it possible that he could skip a cycle? Dillon's 2nd > birthday is Saturday and I've scheduled his party for that day....somehow > I > wonder if it will strike on Saturday.....I'm just babbling here but this > is > really bothering me and I'm not sure what to expect, or when to expect > it....I just keep hoping we can just get it over with so we can move on > with > the rest of the month. Do you ever feel like you are hovering in mid air > just waiting to hit the ground (splat)?! > > > Dillon, Age (almost) 2 > Denton, Texas > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2004 Report Share Posted September 16, 2004 Can they test for it even when he isn't running a fever? With his last fever cycle Dr. Goff (his pediatrician) tested him on the 3rd day of his fever, the 5th day of his fever and then the day after his fever abated. I didn't know if they had to have a fever cycle to compare it to...and since it doesn't appear that Dillon's fever is coming at any sort of a regular interval this month I'm not sure when it will be back (or if it will be back!). His last fever was followed up by a rash which made us wonder if he had Roseolla. Our pediatrician said that if he did it might explain the low neutrophil count because apparently Roseolla can do that too. That has just made it more difficult to pin this down. I might call this guy and see if he can at least answer some questions for us! Thanks for the info. Dillon, Age (almost) 2 Denton, Texas RE: Still waiting - you are in Denton right? How hard would it be for you to come to Medical City? We have a great hematologist who just tested Caden for cyclic neutropenia (blood draws 2-3 x's per week for 6 weeks). You can do the draws at a local lab with an order. It sounds horrible but we got Caden some Emla cream (numbs the skin) and he didn't even feel the needle! Dr. Stanton Goldman Pediatric Hematologist/ Oncologist (no, cylic neutropenia has nothing to do with cancer!) 972-566-6647 Oh and BTW - Caden does NOT have cyclic neutropenia! -- L. s shelleyluan@... (214) 223-7008 Coppell, TX --------- Re: Still waiting > > > Hi , > I don't want to sound like an expert, because I definately have lots to > learn myself! But, my daughter who is going to be 7 next month has been > getting her fevers since she was about 10 months. I will tell you what I > have seen in my child, and again, I am not an expert, but in my child's case > her " cycles " are 4-6 weeks, but sometimes they are closer. In some > instances, we have gone as long as 3 to 4 months, although that was rare. > What I have learned however and this may or may not be chance is that > certain events ie. birthdays, christmas, etc.. can trigger an event for us. > My daughter has religiously had a fever on at least 3 consecutive birthdays > (3, 4, 5,) so last year I didn't remind her of her birthday party until the > night before she went to bed, beacause right or wrong, my doctor said that > " stress " or " excessive " excitment can trigger an episode. Fran what do you > think of this theory? > > Also, I was under the impression that neutropenia referred to a low white > blood count. So your child may just have . Anyways, I babled so I > don't know how much that helped.... > > Azzie > Mother to Kianna almost 7! > California > > The Kauffmans wrote: > Hey everyone, I posted a couple of weeks ago regarding whether your kids > fevers come at regular intervals. We haven't been diagnosed " officially " > with the cyclic neutropenia but that is our doctor's suspicion. Dillon's > fever should have come last week if it was following the same schedule it > has for the last six months......could the last six months of fevers be > just > a coincidence? I'm having a hard time believing that his last six months > of > illness just happened to fall within the same 6-7 week period but now that > we just passed week 7 I'm starting to doubt that this diagnosis is going > to > be accurate. Is it possible that he could skip a cycle? Dillon's 2nd > birthday is Saturday and I've scheduled his party for that day....somehow > I > wonder if it will strike on Saturday.....I'm just babbling here but this > is > really bothering me and I'm not sure what to expect, or when to expect > it....I just keep hoping we can just get it over with so we can move on > with > the rest of the month. Do you ever feel like you are hovering in mid air > just waiting to hit the ground (splat)?! > > > Dillon, Age (almost) 2 > Denton, Texas > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2004 Report Share Posted September 16, 2004 Yes - from what I understand they NEED to do the bloodwork when they are not sick in order to determine what the child's " normal " neutrophil counts are. Doing it just during fever episodes isn't going to get them anywhere because you have no basis for how far the count differs from normal. Make sense? I would give him a call, he is a wonderful person and is GREAT with the kids!!! Glad I could possibly help! -- L. s shelleyluan@... (214) 223-7008 --------- Re: Still waiting > > > > > > Hi , > > I don't want to sound like an expert, because I definately have lots to > > learn myself! But, my daughter who is going to be 7 next month has been > > getting her fevers since she was about 10 months. I will tell you what I > > have seen in my child, and again, I am not an expert, but in my child's > case > > her " cycles " are 4-6 weeks, but sometimes they are closer. In some > > instances, we have gone as long as 3 to 4 months, although that was > rare. > > What I have learned however and this may or may not be chance is that > > certain events ie. birthdays, christmas, etc.. can trigger an event for > us. > > My daughter has religiously had a fever on at least 3 consecutive > birthdays > > (3, 4, 5,) so last year I didn't remind her of her birthday party until > the > > night before she went to bed, beacause right or wrong, my doctor said > that > > " stress " or " excessive " excitment can trigger an episode. Fran what do > you > > think of this theory? > > > > Also, I was under the impression that neutropenia referred to a low > white > > blood count. So your child may just have . Anyways, I babled so I > > don't know how much that helped.... > > > > Azzie > > Mother to Kianna almost 7! > > California > > > > The Kauffmans wrote: > > Hey everyone, I posted a couple of weeks ago regarding whether your kids > > fevers come at regular intervals. We haven't been diagnosed " officially " > > with the cyclic neutropenia but that is our doctor's suspicion. Dillon's > > fever should have come last week if it was following the same schedule > it > > has for the last six months......could the last six months of fevers be > > just > > a coincidence? I'm having a hard time believing that his last six months > > of > > illness just happened to fall within the same 6-7 week period but now > that > > we just passed week 7 I'm starting to doubt that this diagnosis is going > > to > > be accurate. Is it possible that he could skip a cycle? Dillon's 2nd > > birthday is Saturday and I've scheduled his party for that > day....somehow > > I > > wonder if it will strike on Saturday.....I'm just babbling here but this > > is > > really bothering me and I'm not sure what to expect, or when to expect > > it....I just keep hoping we can just get it over with so we can move on > > with > > the rest of the month. Do you ever feel like you are hovering in mid air > > just waiting to hit the ground (splat)?! > > > > > > Dillon, Age (almost) 2 > > Denton, Texas > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2004 Report Share Posted September 16, 2004 Yes - from what I understand they NEED to do the bloodwork when they are not sick in order to determine what the child's " normal " neutrophil counts are. Doing it just during fever episodes isn't going to get them anywhere because you have no basis for how far the count differs from normal. Make sense? I would give him a call, he is a wonderful person and is GREAT with the kids!!! Glad I could possibly help! -- L. s shelleyluan@... (214) 223-7008 --------- Re: Still waiting > > > > > > Hi , > > I don't want to sound like an expert, because I definately have lots to > > learn myself! But, my daughter who is going to be 7 next month has been > > getting her fevers since she was about 10 months. I will tell you what I > > have seen in my child, and again, I am not an expert, but in my child's > case > > her " cycles " are 4-6 weeks, but sometimes they are closer. In some > > instances, we have gone as long as 3 to 4 months, although that was > rare. > > What I have learned however and this may or may not be chance is that > > certain events ie. birthdays, christmas, etc.. can trigger an event for > us. > > My daughter has religiously had a fever on at least 3 consecutive > birthdays > > (3, 4, 5,) so last year I didn't remind her of her birthday party until > the > > night before she went to bed, beacause right or wrong, my doctor said > that > > " stress " or " excessive " excitment can trigger an episode. Fran what do > you > > think of this theory? > > > > Also, I was under the impression that neutropenia referred to a low > white > > blood count. So your child may just have . Anyways, I babled so I > > don't know how much that helped.... > > > > Azzie > > Mother to Kianna almost 7! > > California > > > > The Kauffmans wrote: > > Hey everyone, I posted a couple of weeks ago regarding whether your kids > > fevers come at regular intervals. We haven't been diagnosed " officially " > > with the cyclic neutropenia but that is our doctor's suspicion. Dillon's > > fever should have come last week if it was following the same schedule > it > > has for the last six months......could the last six months of fevers be > > just > > a coincidence? I'm having a hard time believing that his last six months > > of > > illness just happened to fall within the same 6-7 week period but now > that > > we just passed week 7 I'm starting to doubt that this diagnosis is going > > to > > be accurate. Is it possible that he could skip a cycle? Dillon's 2nd > > birthday is Saturday and I've scheduled his party for that > day....somehow > > I > > wonder if it will strike on Saturday.....I'm just babbling here but this > > is > > really bothering me and I'm not sure what to expect, or when to expect > > it....I just keep hoping we can just get it over with so we can move on > > with > > the rest of the month. Do you ever feel like you are hovering in mid air > > just waiting to hit the ground (splat)?! > > > > > > Dillon, Age (almost) 2 > > Denton, Texas > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2004 Report Share Posted September 16, 2004 After Kiaras tonsillectomy we had a few great months!. now its not bad fevers but still happening and then in august with the removal of the appendix.. she hasnt had a fever since either Re: Still waiting , I frequently feel like I live my life waiting for fevers. And then plan my life around them! Just when I think I have the cycle figured out, it changes. Drew was every 28-30 days like clockwork initially, once we started prednisone over a year ago it went to 6 weeks for awhile, then 4 again, then 2 weeks for a few months, then 10 days (then we stopped the prednisone) and since then it has been kind of irregular. He just had his tonsillectomy 2 weeks ago, so I'm hoping we're one of the lucky ones.... Good luck! mom to Drew, age 2 1/2 town, RI > Hey everyone, I posted a couple of weeks ago regarding whether your kids > fevers come at regular intervals. We haven't been diagnosed " officially " > with the cyclic neutropenia but that is our doctor's suspicion. Dillon's > fever should have come last week if it was following the same schedule it > has for the last six months......could the last six months of fevers be just > a coincidence? I'm having a hard time believing that his last six months of > illness just happened to fall within the same 6-7 week period but now that > we just passed week 7 I'm starting to doubt that this diagnosis is going to > be accurate. Is it possible that he could skip a cycle? Dillon's 2nd > birthday is Saturday and I've scheduled his party for that day....somehow I > wonder if it will strike on Saturday.....I'm just babbling here but this is > really bothering me and I'm not sure what to expect, or when to expect > it....I just keep hoping we can just get it over with so we can move on with > the rest of the month. Do you ever feel like you are hovering in mid air > just waiting to hit the ground (splat)?! > > > Dillon, Age (almost) 2 > Denton, Texas > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2004 Report Share Posted September 16, 2004 After Kiaras tonsillectomy we had a few great months!. now its not bad fevers but still happening and then in august with the removal of the appendix.. she hasnt had a fever since either Re: Still waiting , I frequently feel like I live my life waiting for fevers. And then plan my life around them! Just when I think I have the cycle figured out, it changes. Drew was every 28-30 days like clockwork initially, once we started prednisone over a year ago it went to 6 weeks for awhile, then 4 again, then 2 weeks for a few months, then 10 days (then we stopped the prednisone) and since then it has been kind of irregular. He just had his tonsillectomy 2 weeks ago, so I'm hoping we're one of the lucky ones.... Good luck! mom to Drew, age 2 1/2 town, RI > Hey everyone, I posted a couple of weeks ago regarding whether your kids > fevers come at regular intervals. We haven't been diagnosed " officially " > with the cyclic neutropenia but that is our doctor's suspicion. Dillon's > fever should have come last week if it was following the same schedule it > has for the last six months......could the last six months of fevers be just > a coincidence? I'm having a hard time believing that his last six months of > illness just happened to fall within the same 6-7 week period but now that > we just passed week 7 I'm starting to doubt that this diagnosis is going to > be accurate. Is it possible that he could skip a cycle? Dillon's 2nd > birthday is Saturday and I've scheduled his party for that day....somehow I > wonder if it will strike on Saturday.....I'm just babbling here but this is > really bothering me and I'm not sure what to expect, or when to expect > it....I just keep hoping we can just get it over with so we can move on with > the rest of the month. Do you ever feel like you are hovering in mid air > just waiting to hit the ground (splat)?! > > > Dillon, Age (almost) 2 > Denton, Texas > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2004 Report Share Posted September 16, 2004 Just wanted to add that Caden had a 6 month stretch of no fevers after his tonsillectomy. Unfortunately, they came back with a vengeance. However, we are now on week 7 since last fever so maybe they are getting farther apart! -- L. s shelleyluan@... (214) 223-7008 --------- Re: Still waiting > > > , > I frequently feel like I live my life waiting for fevers. And then > plan my life around them! Just when I think I have the cycle > figured out, it changes. Drew was every 28-30 days like clockwork > initially, once we started prednisone over a year ago it went to 6 > weeks for awhile, then 4 again, then 2 weeks for a few months, then > 10 days (then we stopped the prednisone) and since then it has been > kind of irregular. He just had his tonsillectomy 2 weeks ago, so > I'm hoping we're one of the lucky ones.... > Good luck! > > mom to Drew, age 2 1/2 > town, RI > > > > Hey everyone, I posted a couple of weeks ago regarding whether > your kids > > fevers come at regular intervals. We haven't been > diagnosed " officially " > > with the cyclic neutropenia but that is our doctor's suspicion. > Dillon's > > fever should have come last week if it was following the same > schedule it > > has for the last six months......could the last six months of > fevers be just > > a coincidence? I'm having a hard time believing that his last six > months of > > illness just happened to fall within the same 6-7 week period but > now that > > we just passed week 7 I'm starting to doubt that this diagnosis is > going to > > be accurate. Is it possible that he could skip a cycle? > Dillon's 2nd > > birthday is Saturday and I've scheduled his party for that > day....somehow I > > wonder if it will strike on Saturday.....I'm just babbling here > but this is > > really bothering me and I'm not sure what to expect, or when to > expect > > it....I just keep hoping we can just get it over with so we can > move on with > > the rest of the month. Do you ever feel like you are hovering in > mid air > > just waiting to hit the ground (splat)?! > > > > > > Dillon, Age (almost) 2 > > Denton, Texas > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2004 Report Share Posted September 16, 2004 Just wanted to add that Caden had a 6 month stretch of no fevers after his tonsillectomy. Unfortunately, they came back with a vengeance. However, we are now on week 7 since last fever so maybe they are getting farther apart! -- L. s shelleyluan@... (214) 223-7008 --------- Re: Still waiting > > > , > I frequently feel like I live my life waiting for fevers. And then > plan my life around them! Just when I think I have the cycle > figured out, it changes. Drew was every 28-30 days like clockwork > initially, once we started prednisone over a year ago it went to 6 > weeks for awhile, then 4 again, then 2 weeks for a few months, then > 10 days (then we stopped the prednisone) and since then it has been > kind of irregular. He just had his tonsillectomy 2 weeks ago, so > I'm hoping we're one of the lucky ones.... > Good luck! > > mom to Drew, age 2 1/2 > town, RI > > > > Hey everyone, I posted a couple of weeks ago regarding whether > your kids > > fevers come at regular intervals. We haven't been > diagnosed " officially " > > with the cyclic neutropenia but that is our doctor's suspicion. > Dillon's > > fever should have come last week if it was following the same > schedule it > > has for the last six months......could the last six months of > fevers be just > > a coincidence? I'm having a hard time believing that his last six > months of > > illness just happened to fall within the same 6-7 week period but > now that > > we just passed week 7 I'm starting to doubt that this diagnosis is > going to > > be accurate. Is it possible that he could skip a cycle? > Dillon's 2nd > > birthday is Saturday and I've scheduled his party for that > day....somehow I > > wonder if it will strike on Saturday.....I'm just babbling here > but this is > > really bothering me and I'm not sure what to expect, or when to > expect > > it....I just keep hoping we can just get it over with so we can > move on with > > the rest of the month. Do you ever feel like you are hovering in > mid air > > just waiting to hit the ground (splat)?! > > > > > > Dillon, Age (almost) 2 > > Denton, Texas > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2008 Report Share Posted December 13, 2008 hi everyone. i've been reading your post and following with interest. i just thought i let you all know what dakota and i have been up to. in a word...waiting. we are still awaiting approval from our insurance company to allow us to see dr rice at cc. it's so frustrating. the only good thing to come from all this waiting is i'm working without interuption and dakota is attending school. dakota is also gaining weight with his tube feeding. when we do finally get to the point of surgery maybe he'll have a few pound on him so any weight loss he may experience won't be to drastic...angela Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2008 Report Share Posted December 14, 2008 tonia- I've e mailed doc rice just before turkey day and haven't got a reponse. I asked him if he would consider writing a letter to my insurance company. guess the answer is no. I've actually entered a contest on a local radio station here. it's make a wish type contest. I wished we could have surgery with dr rice in cleveland. so far I ha Re: still waiting - Hi its Tonia Glad to hear Dakota is gaining some weight and is still strong enough to continue going to school.Hes a tuff kid! I really hope you all hear something soon! Have you talked with Dr Rice yet about Dakota at all? Ihavent been on alot lately but didnt know if I missed that some where. Stay on that insurance company and push them to get this done asap-its been long enough already.Keeping you guys in my thoughts. Tonia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2008 Report Share Posted December 14, 2008 I hate when I hit the wong button. let me drink some more coffee. anyway. per the contest.. haven't heard anything there either. I can't wait to meet you all in richmond. are you ready for christmas???? went shopping yesterday I guess I kinda lost it in the mall. all those " normal " teenagers shoping with their friends. it just got to me that my kid has this damn tube and can't hang out at the food court..anyway I guess I was feeling sorry for myself. a friend of mines kid drowned last summer. he was 15. I need to be grateful mine is here with me, it's just, some days... I read what you wrote about the insurance for the dude in tenn. in va if you dial 211 your get connected with programs that help. we of course make just enough not to quailify for anything. but maybe tenn has a similar program. I think it connects with the united way. maybe worth checking out...angela Re: still waiting - Hi its Tonia Glad to hear Dakota is gaining some weight and is still strong enough to continue going to school.Hes a tuff kid! I really hope you all hear something soon! Have you talked with Dr Rice yet about Dakota at all? Ihavent been on alot lately but didnt know if I missed that some where. Stay on that insurance company and push them to get this done asap-its been long enough already.Keeping you guys in my thoughts. Tonia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2008 Report Share Posted December 14, 2008 Hey Girl- I know what your feeling about the food court thing.Samething happened to me with .My biggie was when he couldnt take his band trip to New York that he waited on 2 years.We also lost all our money on top of him not being able to go. Just know that in time Dakota will be like the rest. OMG IM SO EXCITED YOU GUYS ARE COMING ON THE 16TH!!!!!!I cnat wait to meet everyone inperson to put a face with all these cals and posts : ) Tonia > > > > > > hi everyone. i've been reading your post and following with > > interest. i > > > just thought i let you all know what dakota and i have been up > to. > > in a > > > word...waiting. we are still awaiting approval from our insurance > > > company to allow us to see dr rice at cc. it's so frustrating. > the > > only > > > good thing to come from all this waiting is i'm working without > > > interuption and dakota is attending school. dakota is also > gaining > > > weight with his tube feeding. when we do finally get to the point > of > > > surgery maybe he'll have a few pound on him so any weight loss he > > may > > > experience won't be to drastic...angela > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2010 Report Share Posted June 24, 2010 Hi , Noelle was first diagnosed at 11 months also with a 39 degree curve. Her first birthday was also a very special one! Her MRI was done at 13 months and we actually started casting at 18 months. We saw her current ortho when she was 14 months old and her curve improved some before it worsened so we held off on casting at first in case she resolved on her own. The first casting is so nerve-wracking but the truth is that a few weeks shouldn't make a very big difference in most cases. I hope that you will be able to enjoy the birthday celebration and that you are able to get in earlier so that you have that peace of mind. Let me know if I can be of any help.... - Noelle's mommy, 3 years oldRochester NYCasted 8 times for 1 1/2 years and in first brace!reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III From: Dobbs <ohana_is_love@...>Subject: Still Waitinginfantile scoliosis treatment Date: Tuesday, June 22, 2010, 2:44 PM Hi everyone, Just an update on our Kaity, We're still waiting to see the Neurosurgen about her Chairi, she can't see the Dr. until the 30th of June. I can't get her in any sooner either, and I'm nervous about her curve getting worse too. But Dr. S at Chicago wants that apt. to take place before he will cast her. I am hoping that they can just keep an eye on the Chairi, and avoid anything else. So she can get casted right away in July. *fingers crossed* Kaity seems to be doing fine, still her happy normal self. She's pulling herself up on everything.. and doing her best to get around. Talking more and more everyday. :') Her 1st birthday is this Saturday, and we plan to make it a very special one Mommy to Isaac ( 3 1/2) and Kaitlyn ( 11 1/2 months) 39 deg* Quote Link to comment Share on other sites More sharing options...
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