Guest guest Posted September 28, 2005 Report Share Posted September 28, 2005 Yes... cyclic neutropenia can present in a similar presentation as other disorders... When you have time go to the file section and check out the information I have.... there is an enormous wealth of info I have gathered throughout the years... You will see the similarities... Usually cyclic neutropenia is the FIRST disorder a physician who sees periodic fevers wants to test for.... The lab work is done every other day for up to 6 weeks.... checking the neutrophil count. Please remember, anyone can get on the list for the genetic research at NIH. It takes months to be called but all is done there for free.... and nothing is billed for so the child will not have a " pre-existing " disorder for the insurance companies to track. Also the genetic markers that Kastner tests for are more inclusive and have a broader range.... than other labs. Just a thought. God Bless Fran 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 October 15, 2005 Report Share Posted October 15, 2005 hi Laurie, my son who's almost 2 had the testing done to rule out the same thing. i was so worried that i actually put it off for a month or so! it think it was the right thing to do especially since our outcome was good. for him it was a finger stick twice a week for 6 weeks. by the third time he didn't even care and just looked forward to the toys he got from the nurses. i think it was worse on my husband and me than on our boy. so far we've been 10 weeks with no fever and we're so thankful to have that condition ruled out. cyclic neutropenia can be very dangerous and can make our kids very vulnerable. do what you think is right but for me, looking back it was a small price to pay for huge peace of mind. write back if you want. Donna, Charlotte, NC. > > 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 16, 2005 Report Share Posted October 16, 2005 We also went through some of the testing for cyclic neutropenia. Our physician recommended it after 8 months of cyclic fevers. Dillon had a febrile seizure during the 8th cyclic fever so our physician sent him for testing and we found that he had a low white blood cell count. We started going every other day until the fever subsided and then we had to start again when his fever returned the following month. Fortunately, we found a good lab (our first lab was horrible and we switched immediately to a kinder, gentler lab) and Dillon's fevers stopped inexplicably after 9 months. As of October 21st Dillon will be fever free for 1 year. I also think its important to test for the cyclic neutropenia, especially if you have at least one blood test that shows a low count.....it can mean during fevers or around the time of the fever your child would be more susceptible to illness. I would certainly want to know! You might look into some of the cremes that some of the people on this site have used to numb the finger or try and time it when your child is asleep (especially if she is a heavy sleeper!). Good luck! Dillon Age 3 Tyler Age 6 Denton, Texas Re: Cyclic Neutropenia hi Laurie, my son who's almost 2 had the testing done to rule out the same thing. i was so worried that i actually put it off for a month or so! it think it was the right thing to do especially since our outcome was good. for him it was a finger stick twice a week for 6 weeks. by the third time he didn't even care and just looked forward to the toys he got from the nurses. i think it was worse on my husband and me than on our boy. so far we've been 10 weeks with no fever and we're so thankful to have that condition ruled out. cyclic neutropenia can be very dangerous and can make our kids very vulnerable. do what you think is right but for me, looking back it was a small price to pay for huge peace of mind. write back if you want. Donna, Charlotte, NC. > > 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 16, 2005 Report Share Posted October 16, 2005 Fran, Is it true that they can do a finget poke and not have to take it from her arm? Thanks Laurie Fran Bulone <fbulone@...> wrote: , 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 October 17, 2005 Report Share Posted October 17, 2005 Not usually A finger poke is not normally enough blood to do the Wbc count as well as a differential. They need a few cc's of blood. What lab told you that? Fran 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 October 17, 2005 Report Share Posted October 17, 2005 Fran, I seen on this site a few people say that thats all they need to do, and not to let them say you need it from the arm. Thanks Laurie Fran Bulone <fbulone@...> wrote: Not usually A finger poke is not normally enough blood to do the Wbc count as well as a differential. They need a few cc's of blood. What lab told you that? Fran 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 October 17, 2005 Report Share Posted October 17, 2005 We tried the finger poke method and it did NOT work. I won't let them ever do finger pokes on my daughter for anything anymore. I think they are more painful, when they poke and are squeezing to get enough blood the entire time. Plus her blood always coagulates and they also can never get enough. Tracey On Monday, October 17, 2005, at 12:42 PM, Bisson wrote: > I have a friend who works as a lab tech. you can do the finger poke > and hope and pray that it wont coagulate and they can try to get the > results. most times its not enought blood to do a WBC and the > differential. > mom to Kiara 5 > RE: Cyclic Neutropenia > > > Fran, > > I seen on this site a few people say that thats all they need to do, > and not to let them say you need it from the arm. Thanks > Laurie > > Fran Bulone <fbulone@...> wrote: > Not usually > A finger poke is not normally enough blood to do the Wbc count as > well as a > differential. > They need a few cc's of blood. > What lab told you that? > > > Fran > 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 October 17, 2005 Report Share Posted October 17, 2005 I'm Peytons' grandmother and I work in a lab {medical technologist} a cbc {which includes a white count and a differential} can be done by fingerstick, but a sed rate would require a venipuncture. asked me to respond to this. The plastic tube is coated with EDTA to prevent clotting. Hope this helps. Cookie Grandmother to Peyton --- Fran Bulone <fbulone@...> wrote: > Not usually > A finger poke is not normally enough blood to do the > Wbc count as well as a > differential. > They need a few cc's of blood. > What lab told you that? > > > Fran > Fran A Bulone > Mom to ph 6 yrs old > Waxhaw, NC > Owner & Moderator Group > > > > > [Non-text portions of this message have been > removed] > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2005 Report Share Posted October 17, 2005 Hi, If the lab is able to get a differential from their fingerstick, then go for it! God Bless Fran _____ From: [mailto: ] On Behalf Of laurie Awbery Sent: Monday, October 17, 2005 11:54 AM Subject: RE: Cyclic Neutropenia Fran, I seen on this site a few people say that thats all they need to do, and not to let them say you need it from the arm. Thanks Laurie Fran Bulone <fbulone@...> wrote: Not usually A finger poke is not normally enough blood to do the Wbc count as well as a differential. They need a few cc's of blood. What lab told you that? Fran 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 October 17, 2005 Report Share Posted October 17, 2005 << We tried the finger poke method and it did NOT work. I won't let them ever do finger pokes on my daughter for anything anymore. I think they are more painful, when they poke and are squeezing to get enough blood the entire time. Plus her blood always coagulates and they also can never get enough. Tracey << Hi, Back when ph was tested for cyclic neutropenia, the finger stick was tried... BUT it coagulated for the most part and because the differential was needed they needed a larger speciman. ph definitely did not like the finger stick either. He screamed louder and with the use of EMLA on two usual areas where the stick was done, it was MUCH easier to do the stick. If their was not enough blood in the finger stick or if it cooags... the child needs to be stuck again. In my experience as a Mother first and Registered Nurse second.... it is recommended by most facilities to DO the normal stick vs the finger stick. You as a Mom or Dad or caregiver need to use your own judgement and do what you and the lab technician or RN or whoever.... decides. God Bless Fran 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 October 17, 2005 Report Share Posted October 17, 2005 I have a friend who works as a lab tech. you can do the finger poke and hope and pray that it wont coagulate and they can try to get the results. most times its not enought blood to do a WBC and the differential. mom to Kiara 5 RE: Cyclic Neutropenia Fran, I seen on this site a few people say that thats all they need to do, and not to let them say you need it from the arm. Thanks Laurie Fran Bulone <fbulone@...> wrote: Not usually A finger poke is not normally enough blood to do the Wbc count as well as a differential. They need a few cc's of blood. What lab told you that? Fran 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 October 17, 2005 Report Share Posted October 17, 2005 Thanks for the input guys. I guess Im just stressed about more tests, my daughter is almost 6 and has had more tests then an average adult. And they always come up negative. I guess Im just tired of tests and Im really tired of my Peds Dr never knowing about these 2 diagnoses that is now just being brought to our attention. Thanks again and this is an awesome for a mom not knowing what to do anymore. Thanks for putting some relief in our lives. Laurie mom of almost 6 Fran Bulone <fbulone@...> wrote: << We tried the finger poke method and it did NOT work. I won't let them ever do finger pokes on my daughter for anything anymore. I think they are more painful, when they poke and are squeezing to get enough blood the entire time. Plus her blood always coagulates and they also can never get enough. Tracey << Hi, Back when ph was tested for cyclic neutropenia, the finger stick was tried... BUT it coagulated for the most part and because the differential was needed they needed a larger speciman. ph definitely did not like the finger stick either. He screamed louder and with the use of EMLA on two usual areas where the stick was done, it was MUCH easier to do the stick. If their was not enough blood in the finger stick or if it cooags... the child needs to be stuck again. In my experience as a Mother first and Registered Nurse second.... it is recommended by most facilities to DO the normal stick vs the finger stick. You as a Mom or Dad or caregiver need to use your own judgement and do what you and the lab technician or RN or whoever.... decides. God Bless Fran 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 October 17, 2005 Report Share Posted October 17, 2005 All of 's tests for cyclic neutropenia have been finger pokes (except the initial bloodwork, which involved more tests, so they did it from his arm). They are doing a CBC with differential every time and all they are taking is a little vial from a finger poke. This is a University of Michigan lab. - --- Fran Bulone <fbulone@...> wrote: > Not usually > A finger poke is not normally enough blood to do the Wbc count as > well as a > differential. > They need a few cc's of blood. > What lab told you that? > > > Fran > 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 October 17, 2005 Report Share Posted October 17, 2005 We have had the opposite experience, so I think it really must depend on the skills of the technician and maybe on the kid, too. 's one vein puncture was really traumatic for him. Even though we used EMLA and he didn't seem to feel the actual poke, the tourniquet bothered him a lot and he hated being held down. With EMLA cream, he doesn't feel the finger poke. His finger bleeds really well with no squeezing. The technician just holds his hand over the vial and it just drips. He doesn't even cry--just watches and helps her count the drops! I don't know if there are different techniques for doing this, but the way our technician does it really works for us. She uses a special little automatic thing to poke his finger. I know she has two kinds of them and one works better than the other. She shakes the vial as she is collecting it so that it doesn't coagulate. If it starts to coagulate on his finger, she wipes it with gauze. The whole thing takes less than a minute. It can matter which finger you use too--'s best one is the middle finger on his left (non-dominant) hand. We have also tried his right hand and his ring finger, but they didn't bleed quite as well. I'd just say find a good technician who treats your child well and try to do whatever is least traumatic for your child. - --- Tracey <Tracey4567@...> wrote: > We tried the finger poke method and it did NOT work. > I won't let them ever do finger pokes on my daughter for anything > anymore. I think they are more painful, when they poke and are > squeezing to get enough blood the entire time. Plus her blood > always coagulates and they also can never get enough. __________________________________ - PC Magazine Editors' Choice 2005 http://mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2005 Report Share Posted October 18, 2005 Before Gabby has tests ordered I also ask her Dr. to do " everything " at one time as to avoid her having tests in 2-3 weeks again. __________________________________ 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 March 27, 2006 Report Share Posted March 27, 2006 Thank you , My son 13, has seen the Rhuematologist just one time. Our Ped. has been scratching her head over 's fevers. She did refer us on to the Rheu. but before that we saw a Infectous diease MD and he diangnosed with , that was 2 years ago however a year ago his fevers have been every 21 days. All three MD's have done lots of blood work of which I am now collecting so I now what they are looking for (i'm still not sure what they are looking at) I mentioned to my ped that this test is more detailed then just a wbc and she wants this info. 's white count has been very low at one time with an elevated ANA however, when we saw the Rhue. his white count was back up again. I'm going on a hunch and a feeling that this needs to be ruled out. We keep waiting for to grow out of this and don't do anything about it and I'm tired of not knowing.........I hope this makes sense????? Thanks again, Gretchen Zabierek <jenniferzabierek@...> wrote: 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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