Neutropenia?!?! Please Someone Help Me :[

Kelly - posted on 07/29/2012

We are in the beginning stages of finding out about my daughter having neutropenia. Her neutrophil counts are 160 and has very small and low red blood cells as well. She is 12 months and has been very sick off and on for her first year of life. We are scheduled for blood work 3x a week until august 20th when we go in for our bone marrow biopsy. If the results come back that she does not have Leukemia then we will move forward with injections that will boost her white blood cells and let her live a normal life. I am so very scared and relieved at the same time. I would love to find out more information on this and what you moms are going through as well with a child that has this disease. I have done a lot of research online and I am getting the same information (which isn't much) with a lot of different wording. Although I don't wish this for ANYONE it is nice to know that we aren't alone in this battle :)

Christina - posted on 07/05/2012

Hi Christina! I am Christina Marie as well! :) My son has what is called cyclic neutropenia and I am happy to share his story. He is only 9 months, but was diagnosed at 6 months. We have had multiple hospitalizations and medical intervention in order to finally have a diagnosis. I see you posted in February. Do you have any updates on your daughter's diagnosis?

Heather - posted on 04/25/2012

My 13 month old daughter has Neutropenia, we found out when she was 4 months old. When we first found out i felt the same as you, afraid my baby might have cancer. So far she was been incredibly healthy (never getting sick) & striving more than her playmates without a blood disorder. She is monitored by her pediatric hematologist along with her pediatrician. Anytime she has a fever she needs to go to the ER to monitor her blood cells to make sure she is able to fight infection. She had her first fever back in Feb & off we went to the children's hospital. after some blood work & monitoring her levels had risen & we were able to go home. She still needs to follow the same procedure if she has a fever again to be sure she is ok. Having a child with Neutopenia is not easy but as far as my daughter you would never ever know by looking at her, she is extremely active, happy & healthy. Just follow up with your hematologist & make sure you have an open line of communication & are able to express your concerns, They wanted to do a Bone Marrow aspiration on my daughter back when we fist found out but i refused, Unless my baby showed signs of being ill in any way she will not have an unnecessary surgery, months later her Doc. told me shes happy we didn't do it because shes doing great & doesn't show any signs of cancer. Your doctor will monitor your daughter & check her lymph nodes & such regularly to keep an eye on her. Have you gotten the results back since this post?

Laurel - posted on 04/18/2012

Yes, I have been through this with my two year old just this year. My son's neutrophil count has ranged from 300 something to 18. The first admission to the hospital, the L word was thrown our way, so they did a bone marrow biopsy. His neutrophil count was noticed in January, but we suspect they had been low for months based on his health. He was sick ALL fall. He had an ear infection that lasted 8 weeks, and a cold that lasted 6! They will need to determine what kind of neutropenia your daughter has. And although my son has almost NO neutrophils, he's living a happy life. We keep his hands clean, and keep him away from certain enviroments and sick children. A child with neutropenia has a greater chance of contracting a bacterial infection from his/her own skin and salavia than other people.
There is so much to learn...and it is confusing and scary. But you will soon find out how adaptable we are....and how brave our children are. :) Prayers of peace and comfort for you.