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  #1  
February 14th, 2011, 02:23 PM
Kenna04's Avatar Regular
Join Date: Nov 2010
Location: Texas
Posts: 71
Hi everyone-

I'm fairly new to the forum, just joined the Oct DDC. I was browsing around and found this board. I have a 6 year old daughter that was diagnosed with Chronic Cyclic Neutropenia when she was 3. She currently suffers through the disease with multiple weekly fevers exceeding 100*F, frequent vomitting, constant fatigue, etc. as well as visits to the ER for IV antibiotics. As of now there is not a suitable "treatment" or "cure" for her specifically. Not only has this disease impaired her ability to live normally as a child but it is also affecting her in school. She missed several days of kindergarten and now we're seeing the same pattern with school this year. The state of Texas only allows 10 unexcused absenses (not sure about other state school systems) and she is now well past that which has not only delayed her learning but is now forcing her teacher to consider holding her back next year.

Does anyone else battle with Neutropenia (not neccesarily just cyclic) or have a neutropenic child? If so, what struggle do/did you/your child face? Thanks in advance!
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  #2  
February 15th, 2011, 06:29 AM
amberjolie's Avatar Super Mommy
Join Date: Nov 2006
Location: Ontario
Posts: 884
Hi! I'm so sorry your daughter (and you) has such a challenge to face. Unfortunately I have no info to give you, having no knowledge of neutropenia until your post.

Just to give you a heads up, this forum is usually pretty slow, from my experience, so you may not have too many answers, and you may not find someone who has experience with neutropenia.

Have you looked for online forums specifically for that condition? They would probably be more useful to answer any questions you have.
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  #3  
February 15th, 2011, 09:37 PM
Kenna04's Avatar Regular
Join Date: Nov 2010
Location: Texas
Posts: 71
Hadn't thought about that! Thank so much I will see what I can find!!
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  #4  
February 16th, 2011, 11:30 AM
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Join Date: Feb 2011
Posts: 2
Hi, I have a daughter who is 15 and is still battling cyclic neutropenia, much milder than when she was younger. She was diagnosed as an infant. She never had is as bad as it sounds your daughter has it. Kindergarten and first grade were bad, as she missed a lot of school. The doctor says she has "outgrown it" but I am not so sure. She is always the sickest of my 5 children!

I have not found many helpful forums on cyclic neutropenia. If you find any let me know!! Today, I have been searching all over for more information, which is how I came upon your post. I joined the website just so I could reply to you. I have been keeping track of all her illnesses this fall and winter and they are definitely cyclic. Some years she has been better than others, but it seems the years that she gets Strep, she just gets wiped out and she seems to cycle. Maybe it is just more pronounced those years. She had Strep twice, back to back episodes in the fall, and ever since then she has been sick about every 3 weeks.

Anyway, as far as school goes, we did a lot of work at home in first grade! Because of all the time I spent, and how sick she would get being exposed to so many illnesses in her class, I started homeschooling when she was in first grade, right in the middle of the year. (Next week is our 9 year anniversary!! There are many people who choose to homeschool their kids who have chronic illnesses that impair their ability to attend school regularly. I found I could homeschool her and get her work done in the lower grades in much less time, and on the days she was healthy and able to work. It gives us much more flexibility, even now. Many people think they can not manage homeschooling, but in the lower grades their actual schoolwork may only take 2-3 hours of supervision/instruction by the adult, and then some additional work by the child completing their workbook pages, reading, or even an educational video, internet educational game or website, or project time. There are tons of curriculum out there that makes your job easier than you may think. If you have any inclination to give it a try, seek out some others in your area. There are loads of support groups these days that can provide help with music, art classes or gym. And if it is something you would consider, even if it is for a year or two, please consider joining Home School Legal Defense Association (HSLDA) who will help you if you ever have any difficulties with the school system. Their website, which you can visit even if you are not a member, is chock full of information!! Keeping her out of the classroom, and limiting exposure to every illness, may help to keep her healthier.

If you are not interested in homeschooling, you will have to work with the district ant the curriculum they provide. You may be able to ask for someone to come to your home and tutor her. It may take a doctor's note, and they instruction she gets may still not keep her up to par with her classmates.

If you are worried about her socialization should you try to homeschool, I encourage you to seek out some homeschoolers and get to know them. I think you will find, for the most part, happy well adjusted very friendly children! (no matter where you look, there will always be some shy kids, even in regular school!) All the studies show that our homeschooled children are very well-adjusted.

Homeschooling has also allowed me to let my daughter sleep as much as she wants or needs, adn sometimes sleep is the thing she needs the most!! We can heave a flexible schedule, working in the evening if she feels better, or working on the weekends if necessary.

I hope this helps. Post back to me if you have any other questions! Good luck! It is a unique illness in that not many kids have it. Hope she gets some relief and feels better.

Laura
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  #5  
February 17th, 2011, 11:44 AM
Kenna04's Avatar Regular
Join Date: Nov 2010
Location: Texas
Posts: 71
It's so nice to hear that there is SOMEONE out there that's been down this road...I was begining to feel like we were alone! Between her Hematologist and all the research I've done since her diagnoses, I've become very aware of the fact that Cyclic is the rarest form of Neutropenia affecting only 1 in 1 million cases. Gosh I have SO many questions for you!!! haha

Yesterday we spent 7 hours in the ER. Her Hemotologist is in downtown Ft Worth at Cooks Childrens and we live further north so in "emergency" cases (like yesterday, spiked fever of 102.4) we go to the ER in Denton just north of us. I hate everything about the ER. First of all, they are morons and they NEVER listen to me. I didn't give her Tylenol or Motrin before taking her because I didn't want her fever to decipate before they could draw blood for a CBC. They were full and it took over an hour of waiting before I coaxed the front clerk into informing the doctor of her condition to order the appropriate tests. First they did urine, then chest xrays, and after 2 1/2 hours they finally got her a bed and drew blood. By this time her fever was under 100*F and of course her having cyclic, white blood count was back to "normal". So frustrating! Thankfully the cultures, urine analysis, ears, and chest all looked good and her strep and flu swabs were negative so she received 2 rounds of antibiotics then we were released. The attending said since no bacterial infections were apparent that the spike fever was probably due to her neutrophils not rebuilding at the end of her last cycle. (She had a chest cold for 2 weeks prior)

At this point I am rediculously frustrated with the back and forth between her Hemotologist and the ER attendings. Her Hemotologist assures me without a doubt we have the correct diagnoses but with every trip to the ER thus far, her white cell count has been "nomal" showing "no signs of Neutropenia".

I have seriously considered homeschooling. I swear the kid would sleep 20 hours a day if I let her! I am going to look into this further before making a decision, but I certainly do appreciate the information you have shared!!

My daughter's story: My daughter was the epitomy of healthy as an infant, born 8lbs 1oz and 20". My milk dried up and she was put on formula at 8 months old then switched to whole milk at 12 months. It was the summer of her first birthday that we noticed when she got hot, the milk in her stomach would curdle and she would vomit. We just reduced her milk intake and the problem seemed to resolve itself. Flash forward to 2 1/2 yrs old. When she would throw a "terrible two tantrum" her nose would bleed. Not just bleed but like squirt blood everywhere and would do that for at least 5 minutes. Thats when I started pressing her pedi for answers. He didn't feel the milk issues were related to the nose bleeds but sent us for blood work anyways. When the results came back her white cell count was extremely low and from there we were referred to Cooks to the Hemotologist. We had bloodwork done 3x/wk for 6wks and then we were informed of the Cyclic Neutropenia. At that time she was not compatible with the injections available and I was not willing to put her through a bone marrow transplant as she was not "sickly" to me. No frequent fevers, no infections, NOTHING! Just unrelated nose bleeds. She is small. At 6 1/2 yrs old she is barely 42" and 40.1lbs (as of yesterday). She just recently hit a growth spurt, prior to the growth spurt she was still wearing 2T/3T clothes. Noone ever believes me when they ask how old she is. Everyone says "You're kidding?! I thought she was 3!!!" The Hemotologist says it's not uncommon in the documented cases of Cyclic Neutropenia for the patient to be smaller than average. She explained to me that because there is an imbalance of neutrophil production in the bone marrow, that it affects the growth hormone in the marrow, resulting in delayed and sometimes stunted growth. JL was always well within average percentile at her pedi visits until the nose bleed episodes started, then she fell off the chart. So although it has never been confirmed, my thoughts are that she is one of those cases that the neutropenia developed in early stage childhood, but I could be completely wrong, I'm no doctor!!

Now for the million questions I have for you!! Was your daughter diagnosed at birth? Do they know if she was born with it or if it developed afterwards? Is/was she small for her age? What infections are she more prone to? How long is her average cycle? Does anyone else in the family have a blood or autoimmune disease? Does it ever get any less heartbreaking to watch her struggle? In her case, is Neutropenia first or secondary? If secondary, does she battle Shwachman-Diamond syndrome or Glycogen-storage disease?

Again, it is SO SO SO WONDERFUL to hear from someone who knows what I'm talking about and doesn't look at me like I'm from another planet!! Thank you for taking the time to read and respond to my post, you have made my day!!!

ETA**I forgot I was going to mention about your daughter outgrowing it...The way it was explained to me, and through the research I've done, cyclic is not one of the forms of Neutropenia that can be outgrown. Please correct me if I'm wrong, I would LOVE to hear that this is incorrect information, give me some hope!!!

I didn't realize how long this post had gotten. I guess I got carried away but the only people who ever seem to understand me are doctors, it's nice to hear from a MOM in the same situation.

This is my baby girl, JL:


Last edited by Kenna04; February 17th, 2011 at 11:53 AM.
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  #6  
February 23rd, 2011, 07:58 PM
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Join Date: Feb 2011
Posts: 1
Ladies,
I almost cried when I read your posts. I am a 28 year old woman (in Texas) who has been living with cyclic neutropenia since I was a school age child. Everything in your posts brings back such vivid memories of school! I always did well in school and was able to stay in the public school system throughout my schooling. I was absent a TON and got around the unexcused absence rules by having my doctor write an excuse note each and every time that I had to be out because of the neutropenia. In 6th grade I had part of my intestines rupture because of an infection (called typhlitis or neutropenic entercolitis) and had multiple surgeries that year and was in and out of the hospital. The school set up a tutor to come a couple of times per week and bring me school work. For the most part I just had to teach myself though.
Now, a little more about me. I started having trouble after starting grade school. I felt "run down" and exhausted all of the time. I started getting stomach aches and sores in my mouth and on the top of my head. At one point it hurt so much to eat that I lost a lot of weight. The doctors tested me for everything and couldn't figure out what was wrong. My parents had divorced when I was in kindergarten so my mom thought that I was depressed and took me to see a counselor. Everyone thought I was a hypochondriac! I think about the time of the typhilitis my pediatrician was finally catching on to the cycling white blood cell counts. At that point I was put on neupogen (GCSF) to raise my neutrophil counts. We were hoping that the GCSF would be the miracle we were looking for but it didn't turn out like that. The medication gave me extremely high fevers, excruciating bone pain, vomiting, and flu like aches and pains for days after the injections. By the time I was just beginning to feel up to participating in life again it was time for another shot and more reactions! In early high school I finally refused to take the medication and tried to manage the disease on my own. I still got sick often and slept EVERY free second I could. I have been told by multiple hematologists that the neutropenia shouldn't cause me to feel exhausted but just seeing the posts about your daughters makes me certain that is a symptom! In college things got worse for me again and I was in and out of the hospital fairly frequently. I went back on the medication for a bit but it still wasn't a good long-term answer for me. I went to a very small (fewer than 1,000 total students) liberal arts college in Texas, so it was easier for me to get the one on one attention I needed and the professors worked with me when I was ill and couldn't make it to class. I graduated in 2004 and moved back to the Houston area. I got married later that year and started working for a contractor to NASA. I was searching for cyclic neutropenia information/support now because I am struggling in my workplace. I am absent far too often and have been trying to make a case for doing some telework but cannot get my employer to understand my condition or agree to allow me to work from home. It is so hard to explain to normal healthy individuals what it feels like to be trapped in a body that runs at about 50% on normal days and drops to about 5% for a few days/week each month. I feel like I am always trying to play catch up with my body...as soon as I start feeling a little better, I am hit again by the exhaustion, mouth sores, and infections. Recently I have been getting a ton of ear infections and last month had a sinus infection that was causing my nose to bleed. I was also out of work on medical disability from June 2010 until December 2010 after being hospitalized for unexplained mesenteric lymphadenitis and continuing unexplained upper abdominal pain. I believe one of you mentioned that by the time the doctors get around to testing your daughter, the evidence disappears. I think this may be what is happening with my current stomach pain. I have a theory that I get the same ulcerations that I get in my mouth, in my gut while I am neutropenic but that they disappear quickly once my counts start coming back up. Since the birth of my son in 2008, I have been cycling pretty regularly. I would say that the one huge thing that has changed since his birth is my inability to sleep all the time. I think this has had a huge impact on my health and has put me back into a fairly regular "cyclic neutropenia" pattern. My cycles tend to be anywhere from 21 to 28 days and I regularly get ANCs in the 90-400 range. At my highest, I tend to hover in the 1,000 to 1,500 range. I can occasionally get an ANC in the 2000. My WBC is generally between 1.0 and 4.5. Over the years there has been a lot of discussion as to whether I have chronic neutropenia or cyclic neutropenia but the current thought is that I have cyclic neutropenia. I am set to see a genetic counselor in April to try to figure out which one it is once and for all. From the research I have done, if one has to have neutropenia, it is best to have cyclic. I hope that some of my information will be helpful to you. I would love to share resources and am very willing to answer any questions you may have for me. It is nice to know that there are a few other people out there like me.

All my best,
Sheralyn
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  #7  
May 3rd, 2011, 06:56 AM
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Join Date: May 2011
Location: Ontario, Canada
Posts: 1
Wow, was I surprised to find this site today. Great info. from all of you. I too have a young child you has recently been diagnosed with Cyclical Neutropenia. My son is 22 mths old and has been struggling with illness after illness since he was 6mths old. At the exact time I stopped nursing him. To date a total of 19 different antibiotics before a doctor clued in that something might be seriously wrong. He is my 3rd child, and the only one with the illness. He has been hospitalized for lengthy stays a total of 3 times, all with severe cases of pneumonia, once so bad that it infected his blood. He was even diagnosed with Kawasaki Disease. This made a bone marrow withdrawl impossible as they were afraid of his weakend heart. Hence, his diagnosis came from 6 weeks of blood work, done twice a week. Poor little guy. We now struggle with the high fevers, mouth sores, and just a general crankiness several times a month. Obviously with him being so young it is hard for him to communicate what is wrong. We have been told by our doctors to keep him as isolated as possible from other children & adults who may be sick, keep him out of public restaurants where he would come in direct contact with germs and then put his hands in his mouth. I feel like I am keeping him in a bubble. Thankfully I work from home & have not had to worry about daycare facilities. I would love to get any advice from you on how you manage everyday living. Have any of you found any alternative, natural remedies that have helped increase your child's immune systems?

Thanks!!
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  #8  
June 17th, 2011, 06:52 AM
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Join Date: Jun 2011
Posts: 1
Hi everyone, found this forum as there is nothing on the internet where I can chat to people regarding cyclic neutropenia. I have a 9 and half year old son that was born with cyclic neutropenia. countless trips to ER rooms, Dr's Specialists. the list goes on and on, as i am sure you all know the story. I live in a town called East London in South Africa and as far as i know my son is the only child with this disorder in our town.

he has been hospitalised for double pneumonia, collapsed veins, more pneumonia. I must say the older he has got, the infections dont seem too bad, but then again 2 months ago went through bad bronchitis, stayed off school for a week, then 3 weeks after that got bronchitis again, and off school for another week. He suffers with asthma as well. He had to have majority of his baby teeth taken out.

I was told by my pead that my son is now ADD, sometimes i wonder if this will ever end, but according to my pead, my son has this for life!

Would love to chat to other moms out there in the same situation

look forward to hearing from you

Renee
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  #9  
August 14th, 2011, 06:51 PM
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Join Date: Feb 2011
Posts: 2
Wow, Just saw all the replies since I last logged in. My daughter does not seem to be as severe as some of your kids. And it only seems to flare up when her immune system has been challenged. She does not have many problems in the summer months when there is less sickness in general.

She started having symptoms when she was under a year, I think about 8 months, and was diagnosed within a couple months. She had it monthly until about 2 or 2 1/2, and then it has been more of a problem in the winter months. There were a few winters in which she rarely got sick, and others where it has been every three weeks. In between she leads a pretty normal life, health and energy wise, although she always seems to need extra sleep. She is normal size with no growth issues.

It seems that when she gets sick with something more taxing, like the flu or strep (as opposed to a run of the mill cold), then the cycling becomes more evident. And I do think that even when she cycles, she does not go down to NO neutrophils, just very low neutorphil, so she may not have it as severe as you can have it.

As for family history... my husband had it as a child (presumably, but it was not labeled as such) and had treatment with gamma globulin and that helped. My nephew had it VERY severely, and they called the resolution of his neutropenia a miracle. He has had no problems since then. My husband's family is loaded with autoimmune problems: premature grey, thyroid cancer, scleroderma/morphia, and a few others that I can not think of the names of right now (lung, skin, hand tendon).

Blessings to all of you.
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  #10  
August 19th, 2011, 03:49 AM
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Join Date: Aug 2011
Location: Europe, Romania
Posts: 1
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@Kenna04

Hi! I'm verry happy to find these forum, but also i'm sorry for all your problems. I'm from somewhere from Europe, from Romania -Transilvania, but here the doctors doesn-t know too much about neutropenia. My daughter in 5 years old, Anna, and she has neutropenia since 1 year, and she-s ill once or two a month. She locks like your beautiful daughet Kenna

When she was 1 she the doctors told us that she has leuchimia, so we were devastatet for some days, but then they told us that she has neutopenia but is no cure for these and we have to make analises every year. Now we fond a verry good doctor in Austia, who-s tryng to hepl us, to find a treatment for her. When i-ll have the treatment i-ll write on the forum, maibe it helps.
I wish you all the bests !!

Romana

P.S. : sorry for my blind hand , hope you understand me
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  #11  
October 10th, 2011, 08:24 PM
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Join Date: Oct 2011
Posts: 1
My daughter Kaelee just turned 5 in september and has had neutropenia since 2009. She havs to take the g-csf shot daily. Weve been in and out of the hospital for sugeries from getting teeth removed to having eye surgery, and awful infections and so on. i was just wondering if anyone has been able to get disability for it cause when i filled out for ssi they told me that it didnt affect her ability to do normal things. It just makes me sooo agry for someone to tell me that it doesnt change anything when theyre not the ones that has to go through all of this.
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  #12  
November 1st, 2011, 07:31 AM
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Join Date: Nov 2011
Location: lancaster,tx
Posts: 1
I know how u feel my son has neutropenia also, i also have been denied SSI bur have met a parent that does recieve benefits. I would like to speak to anyone on here for i have met 3 mothers on FB as well
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  #13  
February 21st, 2012, 11:55 AM
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Join Date: Feb 2012
Posts: 1
Hi mommies!

I really hope there are some of you who still frequent this page! (seeing as the last post was last year) I am so glad I found this topic, its a relief to see my son is not the only one fighting this battle. My son has not yet been diagnosed but both his pediatrician and hematologist have brought up this type of neutropenia.

My little boys story:
He was born January 27th, 2011. Weighting in at 8lb 7oz Happiest day of my life Everything seemed to start when he was around 2 months old. He tested positive for RSV. His pedi at the time first had him set up with breathing treatments but then backed out and said just the use a humidifier. After about 2 weeks of using saline spray and cleaning his nose out every day, and a month of persistent coughing - he got better.
He got through the summer nicely, had a few colds, nothing serious. But when fall came around everything seemed to just fall apart. Around August he started a cough, a bad one. His pedi told me it was the croup and did nothing, said it would fix itself. Towards the end of August he started having fevers, cold like symptoms and coming up with single little red bumps. They started on his bum, went away and moved to his forehead, went away and moved to his lip. I took him in again and his pedi said they were infected hair follicles and did nothing.
Then October.... He ran (without [I]too much[I] exaggeration) a constant fever. Every morning he would spike a fever, around (102.6f), I would give tylenol and it would come down, but then it would spike again at night. I was at the pedi almost every other day demanding to figure out what is wrong. "Nothing is wrong, it's just the season. Babies get sick, he's going to get sick."
His fever from then on got worse. It reached 104 and I took him back in and he had a double ear infection, they put him on a round of antibiotics. Couple of days went by and I noticed his left eye was a little swollen, of course it was a Saturday so I called the nurse and she said just to watch it and if it gets worse take him to the ER. Well by the next morning he could barely open the eye along with another fever, so we took him in the ER. They said the ear infection was just coming out his eye and switched him to a stronger antibiotic and sent us home.
He finished the meds and a week or so later his left ear began to swell. Called the nurse, told he what had gone on the past week or so and she said just to take him in. They said it was a bug bite and to start using a cold compress on it, that it would be fine. Few days go by, his still having fevers, hes screaming bloody murder when I do a cold compress and now his ear is swollen so bad it looks like 3 ears in one and now it has drainage. I take him straight back to the ER , still they wouldn't do anything. I told them I wasn't leaving here until someone gives me answer for what is happening to my 8 month old little boy!! So she took a swab of the drainage in his ear. They ended up admitting him, he had Pseudomonas. He was in the hospital for two weeks on IV medication.
After the hospital visit he had pneumonia, bronchiolitis and another double ear infection. Which his old pedi ( FOR SOME REASON?!!?) only treated the ear infection.

I switched his pedi (his new one is a God send!!) He saw that back from his hospital stay his neutrophils we at zero, and still at the time ( 3 months later ) were zero. He sent him to a Hematologist, Immunologist and he will see a Rheumatologist on the 28th. He has been doing blood checks 3x a week for 6 weeks.
Its the end of the first 3 weeks and his neutrophils are at their lowest and he's sick again. Cold symptoms, starting a low graded fever and has another abscess but on his foot this time. They think his neutrophils are cycling but we'll know for sure in another three weeks.

I would just like to know how everyone is holding up and how they're little ones are doing after being diagnosed. Any one have any advise for the future or ways to adjust and help the little one cope?
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  #14  
July 18th, 2013, 10:51 PM
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Join Date: Jul 2013
Posts: 1
Quote:
Originally Posted by Chriren View Post
Hi everyone, found this forum as there is nothing on the internet where I can chat to people regarding cyclic neutropenia. I have a 9 and half year old son that was born with cyclic neutropenia. countless trips to ER rooms, Dr's Specialists. the list goes on and on, as i am sure you all know the story. I live in a town called East London in South Africa and as far as i know my son is the only child with this disorder in our town.

he has been hospitalised for double pneumonia, collapsed veins, more pneumonia. I must say the older he has got, the infections dont seem too bad, but then again 2 months ago went through bad bronchitis, stayed off school for a week, then 3 weeks after that got bronchitis again, and off school for another week. He suffers with asthma as well. He had to have majority of his baby teeth taken out.

I was told by my pead that my son is now ADD, sometimes i wonder if this will ever end, but according to my pead, my son has this for life!

Would love to chat to other moms out there in the same situation

look forward to hearing from you

Renee

Hi Renee

I was so happy when I found your post.

My name is Tracy Wittstock (nee Holmes) and I am also from East London, South Africa.

My son, Daniel 3 years old has just been diagnosed with Cyclic Neutropenia. This is all very new to me. I don't know everything about this blood disorder. I am waiting to see the Paed to ask all the questions.

My son's story started then he turned 1 years old. He was always a vomity baby and I was told that he has reflux. It continued throughout the first year. Then he landed up in hospital. The Paed did tests on him and found out that he has many food allergies. He is allergic to Soya, Dairy, Egg and Fish. He is also asthmatic. My son always complains that his legs, ankles are sore and then I bath him, I have to use a baby soft sponge to bath him. He tells me that is very sore.

He always has dark blue rings under his eyes.

He has always been a sickly baby and after numerous visits to the ER, the ER doctor sent me back to the Paed to do tests on my baby.

After all the blood tests and visits etc, I finally got the results on Thuesday 16 July 2013.

I have been advised by the Paed to keep him out of school until Grade 1.

I was so upset and could not believe that he has this disorder as well.

I would really like to chat to you about this disorder. I have so many questions.

Hope to you from you soon.

Many thanks
Tracy
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  #15  
September 19th, 2013, 08:55 AM
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Join Date: Sep 2013
Posts: 1
Hi. I pray all your children are happy and well. My daughter is 5yrs old and has cyclic neutropenia. We have been blessed that she doesn't get sick often. We've only been to the ER 2 or 3 times a year.
I just have a couple questions. They discovered the neutropenia at her 9mo check up. We were referred to a Hematologist in Children's Hospital. Soon after the first round of tests were done the doctor told us that in most cases children grow out of cyclic neutropenia sometime between the ages of 5-6. My daughter will be 6 in Jan and her neutrophils were under the critical # in the last 2 blood tests. My question is were any of you told the same thing and have a child over the age of 6 who still has Neutropenia? If you do, could you please let me know what they said is causing this.
Thank you for any help.
Maria
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  #16  
November 9th, 2013, 01:10 PM
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Join Date: Nov 2013
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Hi Renee

I know it has been a long time since you added your post, but I really hope you get to read this!

I also live in East London, South Africa. I was diagnosed with Cyclic Neutropenia when I was around 3 months old. I am now 21 and the disorder has absolutely no effect on me, whatsoever. My cousin (9 years old) also has it. She copes with it beautifully and is very rarely disturbed by the effects these days. I have a 20-month-old son and am so grateful that he did not inherit this disorder.

I just wanted you to know that you are not alone here. I really hope you get a chance to read this and that we may have a chance to chat.

Hope your little one (or not so little any more ) is doing well!
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  #17  
November 23rd, 2013, 04:36 PM
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Join Date: Nov 2013
Posts: 1
I am trying to figure out my daughter's illness. It seems so much like all the children here. It has been 1 yr. & still little progress. Her Dr. thinks she's putting it all on, to get out of school! (A+ student & loved by all) Not sure where to turn except the Naturopath who has helped with severity of out breaks. The Dentist identified "Cyclic" as did a friend who is a GP. (Neither knew of the others' diagnosis) Big problem is no family medical history as she is adopted from China. Very very worried & scared, as I read about bone marrow issues. It's tough getting anywhere as referrals are needed & if the Dr. fluffs it all off, who to turn to? From Canada.
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