Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 Nick started at 18 months and at our clinic the youngest ever there was 15 months. Good luck and I hope that you get some answers soon! Amy, mom to: , 21 months old. CVID, MSPI, GERD, Asthma.. On claritin, flovent, xopenex, and IVIG sub Q every two weeks (Carimune NF) visit Nick's website: http://www3.caringbridge.org/ne/nicholasb/<http://www3.caringbridge.org/ne/nicho\ lasb/> Neutropenia Hi! We *MAY* be getting somewhere with finding out what is going on with . His latest blood tests have been helpful! It looks as though he is going to be tested further for neutropenia. His neutrophils have been low in all of his bloodwork -- even when he's not been sick. I'm so hopeful that we'll get to the bottom of this soon, so we can start to get him better. This is just so miserable for him (and us!). Our pediatrician also mentioned IVIG, but said she thought his immunologist would probably think he was too young. What is the youngest any of your children have been started on IVIG? Thanks! Connie - Mommy to (19 months with low IgG and who knows what else) This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. To unsubscribe -unsubscribegroups (DOT) To search group archives go to: /messages<PedP\ ID/messages> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2004 Report Share Posted October 24, 2004 hey, and how is it going??? it is really getting cold here.. how bout out there? anyway, conan goes this friday for IVIG and after reading some of the posts , I am a complete wreck.. Some of the older kids have a horrible time... Just soooooo stresssed I can't even think... IM me, if you are on line tomorrow morining..... kathleen Neutropenia Hi! We *MAY* be getting somewhere with finding out what is going on with . His latest blood tests have been helpful! It looks as though he is going to be tested further for neutropenia. His neutrophils have been low in all of his bloodwork -- even when he's not been sick. I'm so hopeful that we'll get to the bottom of this soon, so we can start to get him better. This is just so miserable for him (and us!). Our pediatrician also mentioned IVIG, but said she thought his immunologist would probably think he was too young. What is the youngest any of your children have been started on IVIG? Thanks! Connie - Mommy to (19 months with low IgG and who knows what else) This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. To unsubscribe -unsubscribegroups (DOT) To search group archives go to: /messages<PedP\ ID/messages></messages<http://groups..c\ om/group//messages>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2004 Report Share Posted October 24, 2004 hey, and how is it going??? it is really getting cold here.. how bout out there? anyway, conan goes this friday for IVIG and after reading some of the posts , I am a complete wreck.. Some of the older kids have a horrible time... Just soooooo stresssed I can't even think... IM me, if you are on line tomorrow morining..... kathleen Neutropenia Hi! We *MAY* be getting somewhere with finding out what is going on with . His latest blood tests have been helpful! It looks as though he is going to be tested further for neutropenia. His neutrophils have been low in all of his bloodwork -- even when he's not been sick. I'm so hopeful that we'll get to the bottom of this soon, so we can start to get him better. This is just so miserable for him (and us!). Our pediatrician also mentioned IVIG, but said she thought his immunologist would probably think he was too young. What is the youngest any of your children have been started on IVIG? Thanks! Connie - Mommy to (19 months with low IgG and who knows what else) This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. To unsubscribe -unsubscribegroups (DOT) To search group archives go to: /messages<PedP\ ID/messages></messages<http://groups..c\ om/group//messages>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2007 Report Share Posted April 25, 2007 I do not know about the rest of the numbers but can tell you that the IgG levels are within normal ranges because my son had a lower number than that. Cassie www.marykay.com/cassieredinger Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2007 Report Share Posted April 25, 2007 I have info on neutropenia www.shwachman.50megs.com <http://www.shwachman.50megs.com/> click on the neutropenia link to the left. Platelets can be high due to infection. my boys have high platelets (sometimes in the 500s ) and no one is ever concerned. We've been told that they have to be REALLY high before they become concerned. Peace be with you, Pattie The Will of God will never take you where the Grace of God won't be with you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2007 Report Share Posted April 25, 2007 , According to my heme, Pneumococcal titers are difficult to interpret. I think Ursula or Dale will chime in. There are reference ranges to these titers. I don't see that they are listed, but I think you want a 2-4 fold increase from a prevaccination titer. Random draws are more difficult to interpret, but could me that she makes a response and doesn't keep it. Have you checked out www.primaryimmune.org ? That is the IDF web site. Not making a protective titer, falls under the diagnosis of selective antibody deficiency. lschatz@... Quoting fourseidels <fourseidels@...>: > I have been reading your posts for over a year now, trying to get all the > information I could. I have a 10 yr. old daughter who has struggled with > immune issues for several years. She also has Eosinophilic Gastroenteritis, > asthma, and partial seizures. > She was tested a year ago for immune deficiency, results were poor, they > gave her a booster and the results improved so they said WAIT and see. > She continued to be ill quite frequently so we retested a couple of months > ago and I am not sure what these results mean. Can anyone give me any > insight? > Neutrophil count low > Platelet count high > IGG at 613 the (bottom of normal) > 50% serotype response to Pneumococcal vaccine > #1- 0.7 > #4- 0.5 > #6- 2.1 > #8- 0.8 > #9- 0.7 > #12- 0.2 > #14- 2.9 > #19- 1.4 > #23- 4.4 > #51- 0.7 > All of the above are below or well below normal. > This concerns me, but I really don't know what I am looking for. Any help > would be appreciated. > > > > > 's Journey > www.caringbridge.org/visit/jessica16 > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2007 Report Share Posted April 25, 2007 Thank you for sending me your web site. The neutropenia link was helpful. has had several tooth " buds " that have disappeared, so now she doesn't have any permanet teeth in those areas. I didn't realize teeth were an issue until I read your information. Pattie Curran <catholicmomof3@...> wrote: I have info on neutropenia www.shwachman.50megs.com <http://www.shwachman.50megs.com/> click on the neutropenia link to the left. Platelets can be high due to infection. my boys have high platelets (sometimes in the 500s ) and no one is ever concerned. We've been told that they have to be REALLY high before they become concerned. Peace be with you, Pattie The Will of God will never take you where the Grace of God won't be with you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2007 Report Share Posted April 25, 2007 Thank you for responding. I do have the ranges and the ones I listed are well below the " normal " range. I will check out the web site you sent. lmschatz@... wrote: , According to my heme, Pneumococcal titers are difficult to interpret. I think Ursula or Dale will chime in. There are reference ranges to these titers. I don't see that they are listed, but I think you want a 2-4 fold increase from a prevaccination titer. Random draws are more difficult to interpret, but could me that she makes a response and doesn't keep it. Have you checked out www.primaryimmune.org ? That is the IDF web site. Not making a protective titer, falls under the diagnosis of selective antibody deficiency. lschatz@... Quoting fourseidels <fourseidels@...>: > I have been reading your posts for over a year now, trying to get all the > information I could. I have a 10 yr. old daughter who has struggled with > immune issues for several years. She also has Eosinophilic Gastroenteritis, > asthma, and partial seizures. > She was tested a year ago for immune deficiency, results were poor, they > gave her a booster and the results improved so they said WAIT and see. > She continued to be ill quite frequently so we retested a couple of months > ago and I am not sure what these results mean. Can anyone give me any > insight? > Neutrophil count low > Platelet count high > IGG at 613 the (bottom of normal) > 50% serotype response to Pneumococcal vaccine > #1- 0.7 > #4- 0.5 > #6- 2.1 > #8- 0.8 > #9- 0.7 > #12- 0.2 > #14- 2.9 > #19- 1.4 > #23- 4.4 > #51- 0.7 > All of the above are below or well below normal. > This concerns me, but I really don't know what I am looking for. Any help > would be appreciated. > > > > > 's Journey > www.caringbridge.org/visit/jessica16 > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2007 Report Share Posted April 25, 2007 I can send you a PDF article on neutropenia and dental issues. Just let me know if you'd like to read it & I will zap it to you. Peace of Christ be with you, Pattie " We cannot all do great things, but we can do small things with great love. " ~Mother Thank you for sending me your web site. The neutropenia link was helpful. has had several tooth " buds " that have disappeared, so now she doesn't have any permanet teeth in those areas. I didn't realize teeth were an issue until I read your information. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2007 Report Share Posted April 25, 2007 , also had significant issues with neutropenia. They seem to have resolved, but he still has episodes of an ANC in the 900 to 1200 range. His first dx was cyclic neutropenia.... 's dx is unclear. We know he has hypogammaglobinemia, not super low, but dropping numbers with a subclass deficiency. He only made a protective response to 2 of 12 pneumococcal bugs, and that was after 4 doses of prevnar. WE know his NK cells showed no function on 3 consecutive lab draws within 6 months which does give him a functional NK cell defect. The last two draws in the last two years were normal, but they were done during a period of health....so, the jury is still out on that. When the numbers are " classically " fitting the diagnosis things are clearer. I am a firm believer in clinical picture with labs to support...but you cannot base diagnosis just on numbers. And I believe in quality of life.... Arm yourself with information. Log your lab results....Ask as many questions as possible...no question is dumb. www.baxter.com has information as well on newly dx patients and a tutorial that goes over the immune system. www.info4pi.org is the jeffrey modell foundation website as well I am not online much. Work fulltime and parttime and am taking an online course. I'll be at work tomorrow until 1. My husband is having surgery and am quite concerned. My work email is lschatz@... if you have questions. Email me there and I can send you my cell # as well. Hang in there. S. Mom to , PID, NOS. Quoting fourseidels <fourseidels@...>: > Thank you for responding. I do have the ranges and the ones I listed are well > below the " normal " range. I will check out the web site you sent. > > > > > lmschatz@... wrote: > , > > According to my heme, Pneumococcal titers are difficult to interpret. I > think Ursula or Dale will chime in. There are reference ranges to these > titers. I don't see that they are listed, but I think you want a 2-4 fold > increase from a prevaccination titer. Random draws are more difficult to > interpret, but could me that she makes a response and doesn't keep it. > > Have you checked out www.primaryimmune.org ? > > That is the IDF web site. Not making a protective titer, falls under the > diagnosis of selective antibody deficiency. > > > > lschatz@... > > Quoting fourseidels <fourseidels@...>: > > > I have been reading your posts for over a year now, trying to get all the > > information I could. I have a 10 yr. old daughter who has struggled with > > immune issues for several years. She also has Eosinophilic > Gastroenteritis, > > asthma, and partial seizures. > > She was tested a year ago for immune deficiency, results were poor, they > > gave her a booster and the results improved so they said WAIT and see. > > She continued to be ill quite frequently so we retested a couple of months > > ago and I am not sure what these results mean. Can anyone give me any > > insight? > > Neutrophil count low > > Platelet count high > > IGG at 613 the (bottom of normal) > > 50% serotype response to Pneumococcal vaccine > > #1- 0.7 > > #4- 0.5 > > #6- 2.1 > > #8- 0.8 > > #9- 0.7 > > #12- 0.2 > > #14- 2.9 > > #19- 1.4 > > #23- 4.4 > > #51- 0.7 > > All of the above are below or well below normal. > > This concerns me, but I really don't know what I am looking for. Any help > > would be appreciated. > > > > > > > > > > 's Journey > > www.caringbridge.org/visit/jessica16 > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2007 Report Share Posted April 26, 2007 Pattie, Thank you for offering to send the articles. I would love to have them. I am trying to gather all the information that I can. Pattie Curran <catholicmomof3@...> wrote: I can send you a PDF article on neutropenia and dental issues. Just let me know if you'd like to read it & I will zap it to you. Peace of Christ be with you, Pattie " We cannot all do great things, but we can do small things with great love. " ~Mother Thank you for sending me your web site. The neutropenia link was helpful. has had several tooth " buds " that have disappeared, so now she doesn't have any permanet teeth in those areas. I didn't realize teeth were an issue until I read your information. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2009 Report Share Posted December 6, 2009 Our ANC concern point is 750. Macey had cyclic neutropenia when she was younger. Under a 1000 concerns me but 750 is where we start precautions. Are his numbers equaling his symptoms and illnesses? 313 is low but if he stays well then that might be " his " number. Which T-cell test was 454? CD4 or CD8? Ursula Mom to (17) and Macey (14,CVID) http://www.caringbridge.org/visit/maceyholleman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2009 Report Share Posted December 6, 2009 Our ANC concern point is 750. Macey had cyclic neutropenia when she was younger. Under a 1000 concerns me but 750 is where we start precautions. Are his numbers equaling his symptoms and illnesses? 313 is low but if he stays well then that might be " his " number. Which T-cell test was 454? CD4 or CD8? Ursula Mom to (17) and Macey (14,CVID) http://www.caringbridge.org/visit/maceyholleman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2012 Report Share Posted January 19, 2012 Does anybody have any expierence of this ? Despite the name its actually the term for constant Low white blood cells. Which i have and i believe could be contributing to the fungal infection. Now i went to my gp today to get a referal to a gastrologist, but i thought i would get a copy of my patient notes and on them it says i have neutropenia. But noone has ever dicussed this with me before so i knew very little about it. I asked my gp is there any way i could raise my white blood cells, she says no there is not. My first google search brings up these treatments -antibiotic and/or antifungal medications to help fight infections; -administration of white blood cells growth factors (such as recombinant granulocyte colony-stimulating factor (G-CSF, filgrastim) in some cases of severe neutropenia; granulocyte transfusions; or -corticosteroid therapy or intravenous immune globulin for some cases of immune-mediated neutropenia. http://www.medicinenet.com/neutropenia/page3.htm#treated Im really angry if im honest how can a doctor tell me there is no treatment? Also my FT3 was 29 like Nicks as i mistakenly took my T3 right before before the test as i thought we had agreed to leave my thyroid labs until my next appointment. I try to tell her that took my T3 1 hour before the test by accident, then she says that it does not matter as you take a 24 hour dose. She thinks T4 is the same as T3 we have already had this argument before. ( What would you advise about my Neutropenia? I have my endo appointment on monday should i just discuss it there, or would it be wise to make another gp appointment? Thanks and i dont knoww what i would do without this group. Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2012 Report Share Posted January 19, 2012 Hi Steve i'm not too bad , some days are better than others. you know how it is. thanks for asking chris > > Indeed Chris > > How are you health wise at the minute, not seen you posting all that much recently ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2012 Report Share Posted January 19, 2012 hi steve just a thought but what is your copper like ...i have read that low (or bio-unavailable) copper can have a HUGE impact on candida ...i believe i have also read that the candida copper connection can be a cause of low white blood cells ...unfortunately i cannot re-find a reference to back that up (sorry). have you had copper levels tested? what about ceruloplasmin (the copper transporter) ...copper, zinc and iron are the three corners of a triangle and they need to be in proper ratio to one another ...i seem to recall you have had some iron issues too? http://www.greatplainslaboratory.com/home/eng/ceruloplasmin.asp trish > > Does anybody have any expierence of this ? > > Despite the name its actually the term for constant Low white blood cells. Which i have and i believe could be contributing to the fungal infection. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2012 Report Share Posted January 19, 2012 Simply Steve, Neutropenia is caused through some form of infection - somewhere in the body, but it doesn't tell you exactly where. Identify the infection, treat it to the best of your ability, once treated, the white cells will increase and your neutropenia will likely disappear. What level of white cells have you and what is the reference range? Have you no chance of running a mile from this idiotic doctor who doesn't know the difference between T4 and T3 - have a word with your local Primary Care Trust who will find you somebody else in your area - and somebody who probably actually cares about their patients. Luv - Sheila Despite the name its actually the term for constant Low white blood cells. Which i have and i believe could be contributing to the fungal infection. Now i went to my gp today to get a referal to a gastrologist, but i thought i would get a copy of my patient notes and on them it says i have neutropenia. But noone has ever dicussed this with me before so i knew very little about it. I asked my gp is there any way i could raise my white blood cells, she says no there is not. http://www.medicinenet.com/neutropenia/page3.htm#treated Im really angry if im honest how can a doctor tell me there is no treatment? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2012 Report Share Posted January 20, 2012 Anita - read about Neutropenia here http://www.medicinenet.com/neutropenia/article.htm Luv - Sheila When I suggested that it could be the hypothyroidism or Candida, he dismisses it and says he doesn't know the reason but he is definitely not concerned! I feel like crying, they just don't care that we are sick!! Anita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2012 Report Share Posted January 24, 2012 I spoke to my endo about it yday and he said it was nothing to worry about, but we did have quite a big disuccion about it. He said as mine are not low on every single test some of them are in range but near bottom that it was acceptale and that my body was just fighting a " hidden " virus as the time of the blood test. - How much of that is true i dont know. Now that i am off HC/Florinef he had no objection for me getting a full blood count this week and then in 3 weeks time - To check if they both come back low or within range. Steve > > Thanks Sheila, I have read this but my GP is still ignorant and thinks my test results are OK! Maybe I will print off a copy and give it to him! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2012 Report Share Posted January 24, 2012 Show him everything that you can Anita, and if he fails to take any notice of what his patient is telling him, find another doctor, but not before telling the Head of Practice that you have lost all faith in this particular doctor. I have found that there are many doctors who don't know everything, which is natural, but rather than do a bit of research, they will throw it back on the patient trying to make them believe there is nothing wrong with them - and it is up to us to stop this happening anymore. Luv - Sheila Thanks Sheila, I have read this but my GP is still ignorant and thinks my test results are OK! Maybe I will print off a copy and give it to him! I started taking the ferrous fumarate and feel better!! The dizziness is much less, my head is less foggy, I'm more alert and awake, get going easier and quicker in the morning, have more energy! And this is after 4 days of taking it! Started the B12 nuggets too. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2012 Report Share Posted January 24, 2012 Hi Steve, My levels are very similar to yours and my WBC has been low like this for the past 7 or 8 years following Epstein Barr Virus. I have suffered with lots of infections over the years that are slow to clear up. I would definately insist on being referred to a haematologist. I was and they gave me iron ifusions for my low iron and they did talk about doing a bone marrow biopsy to test my cells further. I was then passed on to a gastro to check out possible causes of my ongoing anemia. All the gastro tests came back clear (this took years on NHS!) and I am going back to see a haematologist tomorrow. I'm really exhausted tonight, but I will report back more tomorrow. Take care, x > > Yeh im thinking its because my body is fighting the candida infection and failing would this fit low WBC ? > > My actual results are > lympocyte count 0.6 (1.5-40.) > WBC 3.0 (4.0-11.0) > Quote Link to comment Share on other sites More sharing options...
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