Guest guest Posted October 13, 2005 Report Share Posted October 13, 2005 Laurie, Our doctor said the same thing and we're in the middle of the tests. It is a lot of tests, but the doctor made is seem important to find out. We are doing three tests a week for six weeks, but the doctor said to call when he has a fever and maybe we can stop then (so of course, this is the fever he skipped!) Apparently with cyclic neutropenia the neutrophil levels dip for a brief time before the fever, so if you just test when they are sick, you won't catch it. That's why they do so many tests over a long time period. If you do decide to do the tests, I have some tips for you. Choose your lab carefully. The lab where we went for the first test was awful--they held down on a table and never said a word to him. We talked to a supervisor and were referred to a different lab with the most wonderful technician. sits on my lap for the whole procedure. She sings and dances with my kids, blows up her gloves to make balloons for them, and gives them stickers and prizes (even the one who isn't getting tested). The lab is right by a mall with a play area, so we go there after tests whenever we can. I can't say that enjoys the actual tests, but he enjoys everything that surrounds them so much that he has started to ask for blood tests on days he doesn't need them! When I say not today, he says, " Soon? " He has had tests where he didn't cry at all, and others he cries but it's not traumatic. Within a few moments of being done, he is dancing around and picking out his prize. The atmosphere makes all the difference. Another note on the technicians... at the first lab they told us they would need to do a vein puncture every time. This is NOT true. They just weren't comfortable with their own ability to do a finger poke. Our wonderful technician does a finger poke every time and it is quick and easy. 's best finger is the middle one on his left (non-dominant) hand. She warms his hand first, which makes the blood flow faster. Our other secret is EMLA cream. We put this on his finger (or arm for a vein puncture) with an air-tight dressing an hour before the test. It really works. He doesn't react at all to the actual poke. When he does cry it is because he doesn't want to sit and have her hold his hand still to do the test. It doesn't seem to hurt him at all. EMLA is prescription-only in the US (over the counter in Canada). Talk your doctor into prescribing it--it is well worth it! Good luck. - --- magoo3153 <magoo3153@...> wrote: > Anyone have any comments on Cyclic Neutropenia? My ID doc wants to > test for this to rule it out, and it sounds like alot of > blood work. He says hes pretty positive its but wants to > rule > this out. Should we proceed? Im just so new to this that I dont > want > any more unnessasary tests has had too many tests in her > life. > Thanks > Laurie - s mom > > > > __________________________________ Music Unlimited Access over 1 million songs. Try it free. http://music./unlimited/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2005 Report Share Posted October 13, 2005 We are currently testing for this too. But my doc is trying to catch my ds's (4 yrs) fever. We are expecting it this weekend and so we've done 2 tests so far and hoping only to do one more and be done. The reason they do this is that cyclical neutropenia has the same signs as , but can be dangerous (if I understand everything I've read on it) as they are actually getting infections with their fevers and need to be monitored more closely in case of a deadly bacterial infection. We got the cream, but a differnt brand and it is over the counter here (AL) at my grocer's pharmacy called LMX 4. We used it with the first (ball 3 are vein punctures) and he didn't feel a thing. We used it again today and I must of done something wrong cause he did feel it today and cried (not hysterically, but I could tell it hurt). Our hospital has a neat tram that goes back and forth through all the buildings and our treat when we are done is to ride that. By the time we are walking to it, he's forgotten all about the stick and mostly remembers/talks about the cool train ride. Anyway, I'd encourage you to read up on cyclical neutropenia and you will see why most docs want to rule that out....it's important to know. Good luck! Deanna mom to Zachary, 4yrs (undiagnosed fevers) > > Anyone have any comments on Cyclic Neutropenia? My ID doc wants to > test for this to rule it out, and it sounds like alot of > blood work. He says hes pretty positive its but wants to rule > this out. Should we proceed? Im just so new to this that I dont want > any more unnessasary tests has had too many tests in her life. > Thanks > Laurie - s mom > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2005 Report Share Posted October 13, 2005 , I am reading about your information on cyclic neutropenia testing. My son has not yet been diagnosed with anything. His ped. said that we would get the ball rolling when he has his next fever, at which time he would get a blood test for cyclic neutropenia. My questions: do you have to wait for an episode to start the testing? I have read that you need to have the blood tested in times of both wellness and fever, to compare the WBC's. Also, the ped. made it sound like it was a one time test. I am reading that it is an on-going procedure. I'm a bit lost. I appreciate any info on this subject. Thanks! mom of n, 2 --- Klooster <andrea_klooster@...> wrote: > Laurie, > > Our doctor said the same thing and we're in the > middle of the tests. > It is a lot of tests, but the doctor made is seem > important to find > out. We are doing three tests a week for six weeks, > but the doctor > said to call when he has a fever and maybe we can > stop then (so of > course, this is the fever he skipped!) Apparently > with cyclic > neutropenia the neutrophil levels dip for a brief > time before the > fever, so if you just test when they are sick, you > won't catch it. > That's why they do so many tests over a long time > period. > > If you do decide to do the tests, I have some tips > for you. Choose > your lab carefully. The lab where we went for the > first test was > awful--they held down on a table and never > said a word to him. > We talked to a supervisor and were referred to a > different lab with > the most wonderful technician. sits on my lap > for the whole > procedure. She sings and dances with my kids, blows > up her gloves to > make balloons for them, and gives them stickers and > prizes (even the > one who isn't getting tested). The lab is right by a > mall with a play > area, so we go there after tests whenever we can. I > can't say that > enjoys the actual tests, but he enjoys > everything that > surrounds them so much that he has started to ask > for blood tests on > days he doesn't need them! When I say not today, he > says, " Soon? " He > has had tests where he didn't cry at all, and others > he cries but > it's not traumatic. Within a few moments of being > done, he is dancing > around and picking out his prize. The atmosphere > makes all the > difference. > > Another note on the technicians... at the first lab > they told us they > would need to do a vein puncture every time. This is > NOT true. They > just weren't comfortable with their own ability to > do a finger poke. > Our wonderful technician does a finger poke every > time and it is > quick and easy. 's best finger is the middle > one on his left > (non-dominant) hand. She warms his hand first, which > makes the blood > flow faster. > > Our other secret is EMLA cream. We put this on his > finger (or arm for > a vein puncture) with an air-tight dressing an hour > before the test. > It really works. He doesn't react at all to the > actual poke. When he > does cry it is because he doesn't want to sit and > have her hold his > hand still to do the test. It doesn't seem to hurt > him at all. EMLA > is prescription-only in the US (over the counter in > Canada). Talk > your doctor into prescribing it--it is well worth > it! > > Good luck. > > - > > --- magoo3153 <magoo3153@...> wrote: > > > Anyone have any comments on Cyclic Neutropenia? My > ID doc wants to > > test for this to rule it out, and it > sounds like alot of > > blood work. He says hes pretty positive its > but wants to > > rule > > this out. Should we proceed? Im just so new to > this that I dont > > want > > any more unnessasary tests has had too > many tests in her > > life. > > Thanks > > Laurie - s mom > > > > > > > > > > > > > __________________________________ > Music Unlimited > Access over 1 million songs. Try it free. > http://music./unlimited/ > __________________________________ Music Unlimited Access over 1 million songs. Try it free. http://music./unlimited/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2005 Report Share Posted October 13, 2005 , It sounds like different doctors are giving different information about this. Our doctor made a big point out of needing to do the testing BEFORE a fever episode. She has not shown any interest in getting bloodwork done during an actual fever episode. She explained that cyclic neutropenia involves a brief dip in the neutrophil count which happens before a fever begins. She said that if we only tested during a fever, we would be too late. Her protocol is testing three times a week for six weeks. There is a possibility of cutting that short if he has a fever episode before the six weeks are up and they feel that they have enough data to be conclusive. We started the testing right after our appointment with her, which was about a week after he'd had a fever. The doctor who ordered this is Janet Gilsdorf, one of the co-authors of the great article on recurrent fever in children that is included on the files page of the site. The resident we saw initially asked for two tests per week, but Dr. Gilsdorf insisted on three. Yes, it's a lot, but with the EMLA cream and the great technician, it's not too bad. - --- Grade <sjgrade@...> wrote: > , > > I am reading about your information on cyclic > neutropenia testing. My son has not yet been > diagnosed with anything. His ped. said that we would > get the ball rolling when he has his next fever, at > which time he would get a blood test for cyclic > neutropenia. My questions: do you have to wait for > an episode to start the testing? I have read that you > need to have the blood tested in times of both > wellness and fever, to compare the WBC's. Also, the > ped. made it sound like it was a one time test. I am > reading that it is an on-going procedure. I'm a bit > lost. I appreciate any info on this subject. > > Thanks! > > > mom of n, 2 > > --- Klooster <andrea_klooster@...> wrote: > > > Laurie, > > > > Our doctor said the same thing and we're in the > > middle of the tests. > > It is a lot of tests, but the doctor made is seem > > important to find > > out. We are doing three tests a week for six weeks, > > but the doctor > > said to call when he has a fever and maybe we can > > stop then (so of > > course, this is the fever he skipped!) Apparently > > with cyclic > > neutropenia the neutrophil levels dip for a brief > > time before the > > fever, so if you just test when they are sick, you > > won't catch it. > > That's why they do so many tests over a long time > > period. > > > > If you do decide to do the tests, I have some tips > > for you. Choose > > your lab carefully. The lab where we went for the > > first test was > > awful--they held down on a table and never > > said a word to him. > > We talked to a supervisor and were referred to a > > different lab with > > the most wonderful technician. sits on my lap > > for the whole > > procedure. She sings and dances with my kids, blows > > up her gloves to > > make balloons for them, and gives them stickers and > > prizes (even the > > one who isn't getting tested). The lab is right by a > > mall with a play > > area, so we go there after tests whenever we can. I > > can't say that > > enjoys the actual tests, but he enjoys > > everything that > > surrounds them so much that he has started to ask > > for blood tests on > > days he doesn't need them! When I say not today, he > > says, " Soon? " He > > has had tests where he didn't cry at all, and others > > he cries but > > it's not traumatic. Within a few moments of being > > done, he is dancing > > around and picking out his prize. The atmosphere > > makes all the > > difference. > > > > Another note on the technicians... at the first lab > > they told us they > > would need to do a vein puncture every time. This is > > NOT true. They > > just weren't comfortable with their own ability to > > do a finger poke. > > Our wonderful technician does a finger poke every > > time and it is > > quick and easy. 's best finger is the middle > > one on his left > > (non-dominant) hand. She warms his hand first, which > > makes the blood > > flow faster. > > > > Our other secret is EMLA cream. We put this on his > > finger (or arm for > > a vein puncture) with an air-tight dressing an hour > > before the test. > > It really works. He doesn't react at all to the > > actual poke. When he > > does cry it is because he doesn't want to sit and > > have her hold his > > hand still to do the test. It doesn't seem to hurt > > him at all. EMLA > > is prescription-only in the US (over the counter in > > Canada). Talk > > your doctor into prescribing it--it is well worth > > it! > > > > Good luck. > > > > - > > > > --- magoo3153 <magoo3153@...> wrote: > > > > > Anyone have any comments on Cyclic Neutropenia? My > > ID doc wants to > > > test for this to rule it out, and it > > sounds like alot of > > > blood work. He says hes pretty positive its > > but wants to > > > rule > > > this out. Should we proceed? Im just so new to > > this that I dont > > > want > > > any more unnessasary tests has had too > > many tests in her > > > life. > > > Thanks > > > Laurie - s mom > > > > > > > > > > > > > > > > > > > > > > __________________________________ > > Music Unlimited > > Access over 1 million songs. Try it free. > > http://music./unlimited/ > > > > > > > __________________________________ > Music Unlimited > Access over 1 million songs. Try it free. > http://music./unlimited/ > __________________________________ Start your day with - Make it your home page! http://www./r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2005 Report Share Posted October 14, 2005 , Thanks for answering my questions. I am beginning to think that our Dr. is clueless about this whole thing and just figured a blood test during an episode is a good place to start. I am wondering if anyone else has done this, or if all bloodwork is done in periods of wellness. I think I will have to talk to her again about it, but it's such a delicate situation to tell a Dr. that they're going about it all wrong! I hate knowing more than the docs. It just shouldn't be that way!! --- Klooster <andrea_klooster@...> wrote: > , > > It sounds like different doctors are giving > different information > about this. Our doctor made a big point out of > needing to do the > testing BEFORE a fever episode. She has not shown > any interest in > getting bloodwork done during an actual fever > episode. She explained > that cyclic neutropenia involves a brief dip in the > neutrophil count > which happens before a fever begins. She said that > if we only tested > during a fever, we would be too late. Her protocol > is testing three > times a week for six weeks. There is a possibility > of cutting that > short if he has a fever episode before the six weeks > are up and they > feel that they have enough data to be conclusive. We > started the > testing right after our appointment with her, which > was about a week > after he'd had a fever. > > The doctor who ordered this is Janet Gilsdorf, one > of the co-authors > of the great article on recurrent fever in children > that is included > on the files page of the site. The resident we > saw initially > asked for two tests per week, but Dr. Gilsdorf > insisted on three. > Yes, it's a lot, but with the EMLA cream and the > great technician, > it's not too bad. > > - > > --- Grade <sjgrade@...> wrote: > > > , > > > > I am reading about your information on cyclic > > neutropenia testing. My son has not yet been > > diagnosed with anything. His ped. said that we > would > > get the ball rolling when he has his next fever, > at > > which time he would get a blood test for cyclic > > neutropenia. My questions: do you have to wait > for > > an episode to start the testing? I have read that > you > > need to have the blood tested in times of both > > wellness and fever, to compare the WBC's. Also, > the > > ped. made it sound like it was a one time test. I > am > > reading that it is an on-going procedure. I'm a > bit > > lost. I appreciate any info on this subject. > > > > Thanks! > > > > > > mom of n, 2 > > > > --- Klooster <andrea_klooster@...> > wrote: > > > > > Laurie, > > > > > > Our doctor said the same thing and we're in the > > > middle of the tests. > > > It is a lot of tests, but the doctor made is > seem > > > important to find > > > out. We are doing three tests a week for six > weeks, > > > but the doctor > > > said to call when he has a fever and maybe we > can > > > stop then (so of > > > course, this is the fever he skipped!) > Apparently > > > with cyclic > > > neutropenia the neutrophil levels dip for a > brief > > > time before the > > > fever, so if you just test when they are sick, > you > > > won't catch it. > > > That's why they do so many tests over a long > time > > > period. > > > > > > If you do decide to do the tests, I have some > tips > > > for you. Choose > > > your lab carefully. The lab where we went for > the > > > first test was > > > awful--they held down on a table and > never > > > said a word to him. > > > We talked to a supervisor and were referred to a > > > different lab with > > > the most wonderful technician. sits on my > lap > > > for the whole > > > procedure. She sings and dances with my kids, > blows > > > up her gloves to > > > make balloons for them, and gives them stickers > and > > > prizes (even the > > > one who isn't getting tested). The lab is right > by a > > > mall with a play > > > area, so we go there after tests whenever we > can. I > > > can't say that > > > enjoys the actual tests, but he enjoys > > > everything that > > > surrounds them so much that he has started to > ask > > > for blood tests on > > > days he doesn't need them! When I say not today, > he > > > says, " Soon? " He > > > has had tests where he didn't cry at all, and > others > > > he cries but > > > it's not traumatic. Within a few moments of > being > > > done, he is dancing > > > around and picking out his prize. The atmosphere > > > makes all the > > > difference. > > > > > > Another note on the technicians... at the first > lab > > > they told us they > > > would need to do a vein puncture every time. > This is > > > NOT true. They > > > just weren't comfortable with their own ability > to > > > do a finger poke. > > > Our wonderful technician does a finger poke > every > > > time and it is > > > quick and easy. 's best finger is the > middle > > > one on his left > > > (non-dominant) hand. She warms his hand first, > which > > > makes the blood > > > flow faster. > > > > > > Our other secret is EMLA cream. We put this on > his > > > finger (or arm for > > > a vein puncture) with an air-tight dressing an > hour > > > before the test. > > > It really works. He doesn't react at all to the > > > actual poke. When he > > > does cry it is because he doesn't want to sit > and > > > have her hold his > > > hand still to do the test. It doesn't seem to > hurt > > > him at all. EMLA > > > is prescription-only in the US (over the counter > in > > > Canada). Talk > > > your doctor into prescribing it--it is well > worth > > > it! > > > > > > Good luck. > > > > > > - > > > > > > --- magoo3153 <magoo3153@...> wrote: > > > > > > > Anyone have any comments on Cyclic > Neutropenia? My > > > ID doc wants to > > > > test for this to rule it out, and it > > > sounds like alot of > > > > blood work. He says hes pretty positive its > > > > but wants to > > > > rule > > > > this out. Should we proceed? Im just so new > to > > > this that I dont > === message truncated === __________________________________ - PC Magazine Editors' Choice 2005 http://mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2005 Report Share Posted October 14, 2005 , The description gave regarding cyclic neutropenia testing is correct. The testing should be done over 6 weeks... usually starting after a fever episode... which would then give enough time of testing three times a week.... thus allowing the child to actually begin an episode.... the child with cyclic neutropenia will show a significant DECREASE in neutrophils during the testing..... One day or so after the neutropenia appears, patients have malaise, headache, and symptoms of a mild infection. After 1 or 2 days, aphtous ulcers appear and are associated with tender cervical adenopathy and fever. Abdominal pain and diarrhea may also occur. As the neutrophil count returns to normal, the symptoms abate. The cycles are distinct with Cyclic Neutropenia. Even MORE so than . Episodes of fever, stomatitis, pharyngitis, furunculosis, or other cutaneous lesions are seen with precise rhythm and clinical uniformity. The periodicity remains constant and is remarkably consistent among patients. During the neutropenic episodes, the neutrophil count fall below 500/mm3. All patients have cycling of monocyte counts, with monocyte cycles of the same length as, but reciprocal to, neutrophil cycles. Not sure how this chart will show up here... on a post... but our link section has this link... you can read the comparrison... chart if you have not done so already. http://home.coqui.net/myrna/peri2.htm Characteristic Cyclic Neutropenia Rythmycity Fixed (20-22 days) Not fixed Symptoms Fever, stomatitis, pharyngitis, cutaneous and subcutaneous infections High fever, pharyngitis, lymphadenopathy, splenomegaly Susceptibility to Infections Positive Negative Laboratory Cyclin neutropenia Intact immune function Treatment G-CSF Cimetidine Sequelae Sepsis, intestinal perforation No reported sequelae Fran A Bulone Mom to ph 6 yrs old Waxhaw, NC Owner & Moderator Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2006 Report Share Posted March 27, 2006 I need to find info re:neutropenia and the 3 days a week blood test. My pediatrician is very interested and I would like to find the info for her. Thanks, Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2006 Report Share Posted March 27, 2006 Gretchen, My son, Henry, had the blood tests for cyclic neutropenia. His general pediatrician scheduled him for twice/week. Three weeks into the testing, the diagnostic specialist informed us that we should have been going three times/week for 8 weeks. Rather than start over, he allowed us to continue at 2x/week but for 12 weeks instead. What kind of info are you and your ped looking for? Maybe I have something or can get something that can help you. Mother to Henry, , age 1 gretchendanson <gretchendanson@...> wrote: I need to find info re:neutropenia and the 3 days a week blood test. My pediatrician is very interested and I would like to find the info for her. Thanks, Gretchen Quote Link to comment Share on other sites More sharing options...
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