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Cyclic Neutropenia

Jennifer - posted on 02/05/2009 ( 42 moms have responded )

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Hi Im Jen and have a daughter Hope who was diagnosed with Cyclic Neutropenia. Its one of the rarest forms of Neutropenia with an incidence of 1 per million. Looking for any other moms with kids with the same thing..

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Anna - posted on 12/04/2012

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Hi, Jen (and anybody else interested!!!)

I know this is an old thread, but I'm new to this site and this caught my attention! I am a 34 year old mother of 3...and *I* have Cyclic Neutropenia. I was officially diagnosed around age 9, (late 1980's) so I've grown up living with, learning about, and being quite the "guinea pig" for the understanding and treatment of it. I'm happy to help answer any specific questions you have, or put you in touch with the leading experts in the field that I've known almost my entire life! For reference, I was one of the first 10 humans that Neupogen, or G-CSF as we called it back then, was ever used on; and from what I last heard, I am among a very tiny group who has been on it consitently for this long (23-24 years and counting!)....so I know a LOT about Neupogen, as though I was a child, I was very involved with knowing what was going on and have spent my life being educated about this disorder and the treatment which I helped, by participating in am experimental drug study out of state, get approved by the FDA for the treatment of this condition, but still, very few have been on it long term or nearly as long as I have! So, I'm happy and willing to share my experiences, knowledge, contacts, anything I can with you. As a mother, I feel for ANY mother out there who is facing ANY illness with thier child...espcially one like this where without the help of the internet, you'll probably never meet someone who suffers from it in your entire life! (I only grew up knowing others, nationwide, because of my participation in the drug study to ultimately treat it....also, when I was diagnosed, there WAS no treatment for it, other than constant monitoring of my ANC and isolation...the development of Neupogen, even with its negatives, was a lifesaver!!!) I'm very fortunate all 3 of my children, ages 14, 6, and 4 years, are healthly and do not have this disorder, but again, as a mother, I can only imagine being in your shoes and not knowing where to turn, especially with something so rare! But, I'm probably the "oldest" or longest-running or whatever you call it person you'll find who is alive, well, and knowledgeable about this disorder...I literally grew up with it, and even now as an adult, I still have to manage and monitor it. So please, contact me with any and all questions or concerns you may have about this! I'm not sure how this site works yet, I'm assuming you can send me an in-box type message??? If I'm wrong, hopefully you'll get this and will respond and you are welcome to email me personally. I'm here to help!!! The more I can help others with this the more it makes my life-long struggle with it worth it, if that makes sense!!! Take Care! -Anna

Layla - posted on 06/21/2013

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Hey everyone... could anyone please tell me if they have experienced some of the same symptons that my daughter is experiencing. She (Molly) just turned 3 years old, she has been having periodic fevers with no other symptons. She also has knee, tummy, and throat pain all the time. Her throat would be infammed red and she would be burning up with fever but when she woud go to the doctor her blood counts would be fine. One time it was low but they diagnosed her with Tonsilitis and ended up removing her tonsils. 3 weeks later her throat would still get inflammed and she is still compaining of her knees and tummy hurting. They did a blood count her her and it was 450 so he had her admitted to the hospital. We have been her for a week now and they still cant figure out whats wrong with her. The first thing they told us what that she possibly had Leukemia. Now they have ruled that out and today mentioned to me Cyclic Neutropenia. Does anyone elses children complain of any joints, such as knees or tummy and throat hurting?

Deana - posted on 05/15/2013

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Hi. I have a 3 year old daughter that was recently diagnosed with cyclic neutropenia and is now going through her second set of twice weekly blood tests to determine the severity of her disorder. I am finding myself loosing more and more faith in the medical field every day as they haven't started treating her and she runs fevers of over 105. It is so scary to watch her as she runs these fevers and they continue to tell me to just treat with Motrin and Tylenol and if she is in a low count phase take her to the hospital. She has been running these fevers since she was 11 months old and it has taken until just over the age of 3 to diagnose. Sometimes, I just feel so discouraged and alone as I fight for her and for the doctors to not just brush it off as "fever of unknown origin." I know that running that high of fevers every 3-4 weeks for 3-5 days is not normal!

Meagan - posted on 09/12/2013

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I am doing my own research on cyclic neutripenia because I believe this is what my son has. Has had reacurrent fevers since he was 5 months old-now 15 months old. We currently have him on cimdtidine 2 x a day and he has been fever free for 4 weeks now. Question: Will he need to be on this medicine forever or is there another treatment? I just feel so lost and confused because the infectious disease doctor doesn't have answers for me.

HELP
Meagan

Mona - posted on 01/22/2013

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Hi i know a great group of moms on fb that can help you out, our group is called neutropenia moms, tell Nikki i sent you

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Debbie - posted on 09/19/2017

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My son is nine and we found out that he had neutropenia when he was 3 1/2 he has joint pain,stomach issues, and feet and throat and mouth issues, I like this site I find out more here than I do from the doctors

Suzanne - posted on 09/19/2015

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Hi I know it has been a long time but I was wandering did you ever get an answer about the fever situation ?? My now 10months son was diagnosed with neutrapiena at age 2mos he had numbers as low as 450 and last two tests have been done right after a fever of illness and the numbers are are normal range 2000 -2600 they say his illness has nothing to do with the rise but I notice if tested prior to illness they are usually 1000-otr at 700ish... so how would I know if he really is out growing it or if the rise is due to a fever , viral infections and or stomach flu ??
Just wanted to know if you have any answers. ..

Jenny - posted on 09/30/2014

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Actually it's not that rare in my family.. My mom, little brother, 2 of my nephews and my son have all been diagnosed with it. It's tough, but we manage to help keep the infections to a minimum with Elderberry syrup. It's an immune building berry.. you should check it out.

Melissa - posted on 04/29/2014

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I know this is forever and a day later but I just read your post and was wondering if you had any advice/information that could help. My daughter's story sounds just like yours. Febrile seizures and now she is having constant fevers for a little over a year. The doctors have no answers and say oh "It's a virus". They are finally sending her to a rheumatoid doctor and I mentioned it to a friend and she told me about this page. Any advice would be appreciated!!!

Jessicalynnmarielilly - posted on 03/01/2014

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I am hoping for some input. My son was about 6_7 months old and getting frequent colds with fevers and most of the time ear infections. We were back and forth to the sick clinic and er a couple times, and was sent home with antibiotics for ear infection. Finally at 9 months old at his well visit a routine CNBC was done and they saw his and was about 60, they has us repeat it the next day to make sure it wasn't a mistake but unfortunately they came back lower. Eventually a test to check if it was autoimmune was done and was negative, so a different test was donealso for autoimmune which came back showing positive for something positive for an unspecified antibody for autoimmune neutrapenia. So we were told it was autoimmune, but in the meantime he kept getting sick and with fever and admitted, every time with a different virus and once pneumonia and every time and low dropping to 0 at times. So I have been researching and logging every time he was admitted, so far in less than 3 months he was admitted 6 times every 17-22 days, finally after 6th admission they realized how frequent and I mentioned its every 17-22 days, they said its possible autoimmune test was not accurate and maybe its cyclic. Right now cross my fingers its been 22 days since last admission, and they are now planning bone marrow test and genetic test to be done on 3/10.

Jessica - posted on 12/03/2013

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My son started getting fevers at 1 years old, he's now 19 months old. We started doing blood work twice a week, 2 weeks ago because his neutrophil count was 0.36 after a fever. The hematologist assume he has cyclic neutropenia. Yesterday he got a fever which I expected because of the 3 week intervals so we took him to the hospital and to my astonishment his neutrophils weren't down at all, they were at 6.4. My question is what have you found comes first, the fever or the low neutrophil count? I thought that the fever was the response to having low neutrophils but now I'm just confused. Like I mentioned his fevers are exactly 3 weeks apart. Thank you for your time

Denise - posted on 09/06/2013

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Lp aI have a three year old son who has been diagnosed as well. I luve in the South Florida area n i find myself at this point frustrated with the medical system that seems to be extrenely uneducated with this disorder. At this point i am uninsured n its frightening to me that we are on our own. The comments i have read are very similar to the experiences of my son..i have not found anyone to take his case n provide me with assistance for him. This is an ongoing and very alarming situation and i empathize with my boy. He has learned to understand the need to control his fevers, ulcers in mouth, restlessness, lack of apetite, extreme sensitivity to brushing his teeth, reoccuring respiratory problems to include pnemonia..n he is only three...please help me with any information. I have even applied for social security benefits today but fear that without proper knowledge of this i will be denied and he will continue to be underinsured. I have not been able to hold a job because of his condition. i just lost my job Friday because i missed work too many times. PLEASE HELP. My email is denisevalenti@yahoo.com.. I welcome any feedback

Tonia - posted on 08/07/2013

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Yes ! My 3 year old son complains of both his knees AND his tummy! We are doing blood test every week now to see if he has cyclic neutropenia. He was in daycare and always getting sick. Everyone said it was bc he was in daycare. But he never got the flu or a cold. It was always bronchitis or pneumonia ! All the time!! No one else at daycare would get that, just my son.

Gretchen - posted on 05/31/2013

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I am looking for a dentist in the Tampa area who has worked with children with cyclic neutropenia. If any one knows of one please let me know.

Elizabeth - posted on 05/24/2013

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I know this is an old post but I would like to connect with other moms that also have children diagnosed with cyclic neutropenia. My daughter was diagnosed at 9 month old she is 11 now

Amber - posted on 05/07/2013

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My son was diagnosed with this at age 13 months, he is 4 now. OUr hematologist assured us that if we were to have another child that he/she would not be affected. My daughter is 5 months old and she is now also neutropenic so they are all second guessing their initial diagnosis of cyclic neutropenia. Anybody have more than one child diagnosed with this???????

Stephanie - posted on 01/17/2013

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Anna,
Wow, I'm so glad to have your expertise available here. My daughter was added to the registry and we have begun Neupogen about 8 weeks ago. We've gone from daily injections down to 3 days a week. She still continues to have gum bleeding. Last Monday she had a 104 fever and vomited. Her ANC was good. So the doctor believes it was more viral than bacterial. Occasionally she will get really high fevers at night and then the next day she is fine. Did you ever experience this even with Neupogen? We were hoping that at 4 years old she would out grow this, but it sounds like in your case this could be life-long condition.

Steffeny - posted on 01/17/2013

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Hi Ladies! My sons doctor is sending us to a specialist because she believes he has Cyclic Neutropenia as well. Yesterday was the first I have ever heard about that term. I am left wondering what to expect and what questions should I be asking the doctor. We used to go to play groups (for my other child) , but now I'm afraid to take him out. He's only 3 months, so he hasn't been vaccinated against the flu virus yet.

Kookie_jr86 - posted on 11/17/2012

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HI im a mom who right now my 3 month old is being tested for cyclic neutropenia. He was hospitalized at almost a month old with neiserria meningitis and had to stay 3 weeks and have burr holes done they started testing for this because hes had 2 "crisis" already i guess and i'm really confused as to what this means for my son. He had what they thought was late onset inflammation with the treatment of the meningitis and im starting to wonder if this may have something to do with that? Has anyones child had absence of fever with this disorder because the reason they misdiagnosed my sons meningitis initially was because he did not show fevers until about week 2 into treatment which is also when his inflamation picked up?? I dont know if im reaching but im just trying to piece together whats going on with my son. any help would be appreciated

Stephanie - posted on 11/11/2012

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Jessica,

My daughter is four years old. She was only recently diagnosed. Thankfully she has never had a 0 ANC that we are aware of to this point. However, she has also never had an ANC over 450 either. Looking back this diagnosis made so much sense. My daughter has been sick alot in her little life. I feel that she is living on antibiotics. Ear infections, upper respiratory infections, over and over again. It wasn't until last February, when she kept getting a staph infection in the same area and she had red swollen and bleeding gums that I wanted more information. In fact it was my pediatric dentist that called my pediatrian and insisted that we investigate this further. Everytime she has a fever I worry. Last week she had fever of over 104. We are currently seeing a doctor at Arnold Palmer. He has been wonderful. Next week we are hoping to finally begin Neupagen injections. We believe that these injections will increase her ANC. If you are like me, I have looked every where for information. The best site is www.neutropenianet.org, there is a patient handbook you can download.

Jessica - posted on 11/10/2012

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Hi Im very happy to know this group exist. I have a recent experience with this "nuetropenia". here is my story ... My 14 month old began to suffer fevers since August. She has always been a sick baby baby bieng that she was a 32 weeker I thought comon colds, allergies, rashes, caughs... etc was normal. From our first fever in August its been exhausting... Viral infections, sty,bronchitis, e-coli........ sinus infections...etc. She has had fevers every 5-7 days that last 4 days. Tired of ER visits and doctor visits I finally switched pediatrician and demanded a blood test. her ANC is at 0 and has been since 10/24 she was in hospital for 5 days(para Influenza #3) and had daily ANC checks her WBC never went over 0.49(Highest) the crazy thing is that in hospital she did not run any fever. We came home 11/2 and have been in confinement. Until further appt.......(this is soo hard!!) Her most recent test showed SSA Ro antibody so now we are in line to see rheumotologist. Does anyboy ave similar story? Im wondering what the next step is. I have a 9 year old that has been kept away from home because I have a baby with 0 ANC... Im thinking when and how will my life ever get back together???

Jennifer - posted on 10/20/2012

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Hi Moms, Yet another "Jennifer" (!) here who found this site/postings while doing searches for our youngest son's "Cyclic Neutropenia." I am a pediatric nurse & mother of 3 boys, the "baby" being 2 1/2 and fighting these cycles of high fevers of unknown (ie: viral) origin for the past 18 months or so. He has only had 2 diagnosable bacterial infections--ears--in his life & they were mild. All of the rest of his trips to the pediatrician have been along the line of "treat the discomfort of the fevers and keep him hydrated." He did have a febrile seizure right after age 1 due to a viral infection, which seemed to herald in these cycles. Both his pediatrician and the ones I work with all agree it is something he will outgrow. Aside from being slightly anemic, he is a healthy kiddo. It is very frustrating, as I am sure you will all agree, to have to go through bottles of Motrin & Tylenol so quickly & constantly fear another febrile seizure. So far there have not been any suggestions to do biopsies, frequent/regular lab work, etc, which I am not sure I would do to him anyway. He is actually in the midst of an on-cycle now & we are trying to keep him below 103, home-bound, hydrated & occupied...NOT easy with a toddler! So, hello to all of you dealing with this as well & a big thank you to Nick Jr. cartoons!!! ;-)

Stephanie - posted on 10/19/2012

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Finally . . . I found a place to speak to other mom's going through the same thing. My 4 year old daughter has been going through this diagnosis for the last 8 months. We have done the twice weekly six week blood tests, ELA2 gene test, and the bone marrow biopsy. The great news is her bone marrow came back perfect and her ELA2 came back negative. Our Dr. believes that there is a very good chance that she will out grow neutropenia. Her ANC count averages in the 200 range. It has never gone over 420. We first learned of this possible diagnosis after Hailee had a repeated staph infection that had to be lanced three times. I was upset about her constantly being put on antibiotics all the time for various ear infections, upper respiratory infections, staph infections, etc. I began writing everything down. The other issue Hailee still has is red swollen and bleeding gums. After several visits to my pediatric dentist, he said that this is medical issue. Three year olds don't get gingivitis. He is the one that finally called my pediatrician and insisted that we get blood work. We were then sent to a hematologist at Arnold Palmer Hospital who began our journey through neutropenia. Because Hailee does get infections easily and often, our dr. Is going to prescribe injections. We are waiting for his office to call us. Although I'm not looking forward to giving her injections. I am looking forward to her getting better.

Kristen - posted on 10/15/2012

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No kind of treatment or anything. Just the 4-6 mo visits for blood draws to check the neutrophil counts. Conor was about 12 mo at the time of the biopsy and he handled it really well. I was definitely thankful we did it when he was very young!! I felt like it was worth it. Our hematologist wanted to rule out Leukemia (even though he felt that was like #10+ on the list of probably causes. I never felt that was the cause do I wasn't too worried about that. What it did for us was define a cause or reason for the diagnosis of Neutropenia. They determined that there were neutrophils present in his body from the sample drawn. This let his doctors, and us, know that his body was capable of producing neutrophils which meant that for some reason they were being attacked and killed off before they could help his body fight infection. This gave us the knowledge that one day he would outgrow it. The frustration remaining was that there was no way of knowing how long that would take. I remember the doc saying, 'it could be a month, a year, or 5 years.' Each time we went back and had a high count then the next time really low I just remember feeling like it would never happen. We'd get so excited to have a high and feel like we were near the end only to be bumped right back down. It's hard bc there aren't a lot Of people to reach out to for information. I'm here if you need anyone to listen :)

Joanna - posted on 10/15/2012

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Kristen, few questions for ya. Did they ever do any kind of "treatment" on Conor ? Or was it just a constant , take blood , go to hospital for 101 temp kind of thing? Do you really feel like the bone marrow biopsy was worth it? This is something I am struggling with.... How bad was it for Conor? Thankyou so much for responding to me , for the first time I don't feel alone with this situation.

Kristen - posted on 10/14/2012

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That sounds so similar to what we went through with Conor! Thankfully never any bacterial infections, But a lot of fevers and just picking up anything and everything anyone around him had! We would get ANC's of 0 one time and 1800 the next and then back down to 100. Just kind of all over the place. Our hematologist felt that those occasional higher results were an indication he was outgrowing the condition. Eventually he went through a steady time period where everything remained constant above 1500. The biopsy definitely shed light on the fact that his type of neutropenia would eventually be outgrown but we still had somewhat of the feeling you're talking about where you just feel like you still don't know exactly what's going on. As far as vaccines, our pediatrician (also through Hopkins) never advised against it. I can understand why that Would worry you a little. Hang in there and hopefully Laci will soon outgrow it like Conor did!!! It's only been a little over 2 years that we've been in the clear and even as we went though it Conor was so strong and otherwise developmentally great. Just like you said, you'd never know just by looking at him that his poor little body was struggling bc he looked just fine.

Joanna - posted on 10/14/2012

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Thankyou Kristen for your response. This is the first place I have found online with moms who understand. My daughter is Laci with the neutropenia. They did a blood test here for the anti-neutrophil anti-body which came up negative. My hematologist here in NJ feels like it is not necessary for a bone marrow biopsy right now. Sometimes I feel like if they just do it , maybe we would have more answers. I feel like we are playing a game: she gets sick, temp of 101 , go to hospital , draw blood , draw blood cultures , give her IV antibiotics and either admit us or go home. Her ANC has been as low as 200. She hung around in the 900's for a while. Her last blood test on Sept 18th her ANC was 1900 , which is the best she has ever been. Another question for ya: Did you doctors hold off on Conor's vaccines? They told be to stop her vaccinations. She is behind by 5 shots. That makes me nervous to not give her her vaccines but then again nervous to get her vaccinated. They say they expect her to grow out of this but I feel like I have gotten any concrete information. She is a developmentally normal child at a healthy 24lbs, 32 inches tall. To look at her you would never know that inside her body is low neutrophils. She has escaped any bad bacterial infections , thank god. The only thing is that when she gets sick , like a cold , she has temps of 103 or higher at first and then temps of 101 for at least 6 days. Her fevers last sooooo long.

Kristen - posted on 10/14/2012

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Hi Joanna! My son was diagnosed at 9mo as well. We also experienced hospital stays with a 101 fever. His hematologist was at Hopkins here in Baltimore. He had a bone marrow biopsy around 11mo and it was discovered that his body was producing blood cells but for some reason they were being attacked before they could do their job and fight off infection. We were told he had cyclic neutropenia an would eventually outgrow it. By the time he was 4 we were released from the care of the hematologist as he had steady readings of over 1500 after about a 6-12 mo time frame. He is now 6 and things have been just fine! Although it was hard to go through that biopsy it was well worth it to have a more solid understanding of what was happening. Our doctor did the biopsy at the same time he was already under anesthesia for ear tubes being put in. I hope this is helpful in some way. I know how frustrated we felt not really having a clear answer. Good luck to you and best of wishes for good health to your little girl!!

Joanna - posted on 10/14/2012

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Hello, I just found this post searching the internet. I have a 15 month old daughter who was diagnosed with autoimmune neutropenia. She was diagnose at 9 months. We have an appointment at CHOP Oct 26th with the hematology dept. I live in NJ and we have been getting good care here but I need to hear what CHOP has to say. We have had several hospital stays with my daughter because any time she gets a fever over 101 it requires us to go to the hospital for blood work. I would love to hear how you made out with your daughter.

LISA - posted on 08/29/2012

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HiJen, I read you live in PA and going to chop. I live in NJ right over the bridge about 5-10 mins away and is also going to chop. I am new and in shock of what is going on with my little girl. she will be 3 in sept I took her to get routine blood work for preschool all of a sudden on 8-15-12 I get a phone call from her doc telling me to bring her to the ER her blood count was low. To make a long story short the next thing i know I'm in the hem office and he was telling me she has chronic or cyclic neutropenia. What? What? What? in the world is this. yes I did all my reasearch but i dont understand it. My daughter only got sick three times in her life. once with croupe once with a sinus effection and once with a stomach bug. O then this easter it started with the mouth sores and they told me it was hAND FOOT AND MOUTH DISEASE. Now they are telling me it was never hand foot and mouth. she does get tired sometimes and pail butI IDK what to expect. Do i still bring her to school? What am I in for if they call me this week and tell me its not chronic. Am I in for just series of blood work? This is all to much to comprehend right now any info you can give me I will appreciate. Thank you

Lisa - posted on 07/14/2009

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Jen, so good to hear that you love Hope's Hem dr. It is so important to have a positive relationship! I feel your frustration trying to get info. Gotta love those docs who fail to communicate! Sam had a skin biopsy about two weeks ago and we haven't heard anything yet. I guess I am supposed to track down the info on that one.
Wow, Hope's low anc symptoms sound so much like Sam's! At first,I had such a hard time convincing Sam's docs that I saw symptoms that you mentioned. Later, I was taken more seriously when I would call-in and sure enough, he'd be something like 46 anc. I especially agree w/ the moody part. Sam has a hard time emotionally, whenever he is low. Makes me a bit paranoid sometimes, because the first think I think whenever he is tired, whiny or pale is that good ol' anc is down. Sam is going to participate a study for Chronic Neutropenia patients since w/o gcsf, he would be low all the time. His bloodwork will be monitored, and I guess studied- haven't been told the details yet. He has a Hem appt this next week.
Wishing you and your family a healthy summer!
Lisa

Jennifer - posted on 07/06/2009

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Hi Lisa ~ We live in PA and Hope sees Char Witmer out of Childrens Hospital of Philadelphia. I LOVE LOVE LOVE her. She has been a blessing. We just started with her about 6 months ago as her old hem there left. Now while I did like her old Hem it wasnt until Dr Witmer came a board that I felt like things were taken more serious. Funny I can tell with Hope when her ANC is low too. She gets very dark circles under her eyes, gets pale and is very tired all the time. She also is VERY moody during low ANC's. I have taken Hope for several other opinions. They all agrreed to the diagnosis of CN except one but this Hem had us redo the 3 times a week CBC's. Then after all that she has yet to call me with what her opinion is. Nice huh??? and this doc is suppossed to be the best in the field. I even emailed and called her several times with no response. Needless to say I am pretty pissed about it. Hope is also followed by Dr Jordan Orange for Immune. Hope has a hard time holding her vaccine titers. So far though the ones she had done a year ago have stuck. I would love to chat more, I think I friended you on FB.



Jen

Lisa - posted on 07/06/2009

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Hello Jen, nice to connect with someone who manages this crazy thing! My son, Sam, has a primary immune deficiency called x-linked hyper igm. Half of all xhim patients are neutropenic- either cyclic or chronic. Sam has always been below 1000 on his own, but when he turned four, his anc dropped below 500 for about 5 months. After that waiting period, he was started on neupogen. His dr wanted to test him for the ELA2 gene, just to rule that out. Just like we thought, no mutation to that gene was discovered. Sam's condition is considered to be a complication of his immune deficiency, and will not grow out of it, from what they know. The immune deficiency is one in one million. Half of those guys have neutropenia, so it is a very rare combo to have. I have only met two other families dealing with both conditions, so imagine my excitement to find this circle!
Sam usually is admitted 2-3 times a year for neutropenic fevers. Zero anc is not uncommon with a nasty virus, but like you said- anything below 500 is a danger- so we just take the numbers as they come. (I use to freak out, but it is just a way of life now)

So glad to know that Hope responds well to GCSF! What a change for us too. Sorry about her leg pain side effect. I have heard that some get bone pain as a result. Hope's anc swings are so familiar! Sam was 300 this past Monday, and by Friday, he was back up to 2200. He drops fast too- but my tip-off is glassy eyes, pale/ashen color skin, not wanting to eat, severe headache and wanting to sleep. When any of those symptoms occur, I get a cbc very quickly.
We live in Houston, Texas and are very grateful for the med center. Both Texas Childrens Hospital and MD Anderson cancer center manage Sam's issues. (TCH for the immune def. and MD Anderson for the neutropenia) Where are you guys from? Does Hope go to school?
Wishing you and your family good health and lots of good ancs!

Jennifer - posted on 07/05/2009

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My daughter also does not have the ELA2 gene mutation. You do not have to have the gene mutation to have Cyclic Neutropenia. They say if you have the gene you will have CN for the rest of your life but if you do not have the gene mutation there is a big chance you will outgrow it at puberty. There must be something that ahppens when the Hormones start that makes the bone marrow kick into gear.



Tammy your kids have never had a BMB??? I am VERY surprised. My daughter has had two of them done. That ELA2 gene mutation can mean other things besides Cyclic , like Kostmans. With your kids ANC's being below 500 all the time I would think they would want to rule that out as being below 500 all the time is not typical of Cyclic. My Hope is always Neutropenic even when she is on her up time but her highest is usualy in the 800-1200 range. The lowest we have caught her ANC is 18. But as her Hem says 499 or 0 its all the same If its 499 she considers it to be zero. Funny I also work in the medical field. In order to start GCSF you have to have a BMB done. There are certain types of Cancer that you can not do GCSF so they have to rule those out first.



Since my post in Feb, Hope has been in the Hospital 4 times for Neutropenic Fever and they FINALLY put her on Neupogen!!! We started it in May and for the first time in her life she can live like a normal person. I have nver seen her ANC as high as it has been on the G. We started off with daily injections but her WBC went up to like 30,000 and her ANC went up to like 13,000!!! So now we do it every third day and she is staying at a WBC of around 7,000 with a ANC of 2,000. I regret to not starting GCSF sooner. I wish we would have done it a year ago when it was offered to us. My dughter was in 1st grade this past year and missed over 6 weeks of school due to her being sick and in the hospital. Hope ANC can change very quickly. I remember Hope had a routine CBC done on a Wed and her ANC was about 1,200. On Thursday she started with a fever and I took her in for another CBC and her ANC was 18. In 18 hours her ANC dropped that much.



Lisa Hope does well on the G as well. The only side effect we are dealing with is Leg pain What dose are you on? Hope will be seven next month. Weird Lisa that Your son and my daughters strory is very similar. Her counts started off just like his. At around 4 hers crashed very low too. We should talk sometime off FB. Where are you from?



Jen

Lisa - posted on 06/11/2009

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My son does not have the ELA2 mutation (sorry for the confusion). He has a different gene mutation that impairs other basic functions of his immune system. After 5 mos. of low anc, he did have a bone marrow biopsy- and gets one every year. No major side effects w/gcsf- sometimes some headaches, but those are easily managed. I give my son gcsf injections each night and we check his anc every other week. We chose gcsf as a last resort, but are so glad we did. It has changed everything! He used to be low all the time, but now he cycles and only goes low once every month or if he has a virus.
How are your daughters doing? Do they see a hematologist? How do you manage illness? Hope they are healthy!

Tammy - posted on 06/10/2009

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Quoting lisa:

Hello all, my 8 yr old son has cyclic neutropenia w/no ELA2 gene. He was mildly neutropenic from birth, hovering around 700-800 anc. When he was 4, his anc crashed and stayed below 500 for about 5 months- but it seemed to cycle w/in the low anc, with 500 being his high. However gcsf has changed everything. Now he only is home while anc is below 500. gcsf injections every night help him from hitting the dreaded zero! Much better quality of life w/meds. Because he also has a genetic immune deficiency that has neutropenia as a complication, growing out of his anc issue is not going to happen for him. I just stumbled on this group- so glad to since this is so rare. Hope everyone is well!


Lisa,



Your son is missing his ELA2 gene or are you saying he does not have a gene mutation on his ELA2 gene.  My 2 children with neutropenia rarely go over 500....I think this categorizes them as severe.  Did you have to have a bone marrow biopsy to get the gcsf prescribed?  What side effects does he experience?  Any bone pain?  gcfs was offered as treatment option in an emergency, but I am not sure how much had to do with our doctor and how much had to do w/ me being in the health care field and so they did not offer invasive treatments to us (knowing we were not open to much of them).  Glad to hear it is helping your son.

Tammy - posted on 06/10/2009

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Quoting Diane:

Hi
My daughter was neutropenic, but I didnt know of cyclic neut. I will check on what that is, Can you tell me more about it?????



Cyclic neutropenia is genetic and it causes the bone marrow to not produce enough neutrophils.  The neutrophil production cycles, typically every 21 days or so.  So it goes up then it falls.  It can change by the day, but you look at the pattern.  To diagnose it, the first line method is to do blood draws checking the neutrophil levels 3x per week for 6 wks and then looking  at the results.  I know.....I did it with 2 children at the same time.....MWF for 6 wks.  Better than a bone marrow biopsy, which we have managed to avoid.

Lisa - posted on 06/09/2009

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Hello all, my 8 yr old son has cyclic neutropenia w/no ELA2 gene. He was mildly neutropenic from birth, hovering around 700-800 anc. When he was 4, his anc crashed and stayed below 500 for about 5 months- but it seemed to cycle w/in the low anc, with 500 being his high. However gcsf has changed everything. Now he only is home while anc is below 500. gcsf injections every night help him from hitting the dreaded zero! Much better quality of life w/meds. Because he also has a genetic immune deficiency that has neutropenia as a complication, growing out of his anc issue is not going to happen for him. I just stumbled on this group- so glad to since this is so rare. Hope everyone is well!

Diane - posted on 03/22/2009

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Hi

My daughter was neutropenic, but I didnt know of cyclic neut. I will check on what that is, Can you tell me more about it?????

Tammy - posted on 03/20/2009

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I have two children with what they believe is cyclic neutropenia.....which is genetic and there are times that they have zero neutrophils.  Initially they thought our daughter had autoimmune neutropenia but when our son was born and the doctor re-evaluated his diagnosis.



 

Jennifer - posted on 02/11/2009

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There are two types of people with Cyclic Neutropenia Some carry the ELA2 gene and some don't. Hope does not have the gene but after a series of CBC's over a 7 week period of time she def has a cycle. She will go up as high as 1,200 and dip down to the lowest we have which is 52. We have never caught it at zero yet but Im sure it does go down to that. They have seen with the kids who dont have the gene that some can outgrow it at puberty.



Hope has been in and out of the hospital over her 6 short years. Skin infections, sinus infections, Strep throat, Meningitis, Rotovirus, RSV, ect.... For the most part though she is pretty healthy compared to some other kids I have seen.



Jen

Kristen - posted on 02/05/2009

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Hi Jen! My son, Conor, has cronic benign neutropenia. I know our hematologist discussed cyclic with us awhile ago... does that mean she will eventually grow out of the condition? Any problems that she has now or has had? Conor traditionally has a low count of neutrophylls (usually 800 or below.) Fortunately he has escaped the typical bacterial infections so far.

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