6 April 2009

Last Wednesday morning, I received a call from the nurse at the Immunologist's office at Children's Hospital. She said that Emily tested positive for Cyclic Neutropenia.

Cyclic Neutropenia is a form of chronic neutropenia wich tends to occur every three weeks. (Emily's pattern is every 21-28 days) It typically lasts three to six days at a time due to changing rates of cell production by the bone marrow. Emily's bloodwork shows that during most of her neutropenic periods, she has severe neutropenia. Because of the severity of her low cell count at these times, she is abnormally predisposed to fever and infection. According to the nurse, after the neutropenic period, the neutrophil count quickly recovers. By this time, though, usually the child will have aquired another another illness if exposed by someone who was contagious. We have seen this happen in the last week. Emily was dealing with one of her regular "fever spells" and now has a bad cough and nasty nose that is being treated with antibiotics, steroids, etc.

Neutropenia is a blood disorder that some people are born with. In some cases, it can happen after a bad viral infection. Sometimes it happens for no known reason. In Emily's case, when I spoke with the nurse today, she explained that because we have had no known family history of fever of unknown origin, Emily's Neutropenia was most likely caused by her having a severe case of Viral Meningitis in February of 2008.

Neutrophils are the cells that surround and destroy bacteria in your body. During the neutropenic times, the number of neutrophils in the blood is too low. People with neutropenia get infections easily and often. Most of the infections occur in the lungs, mouth, throat, sinuses and skin. Often patients must be hospitalized so they may receive IV antibiotics. Emily has experienced all of these infections, but most of the time her mouth/throat is her "hot spot." Almost every time she has a "fever spell" she ends up with a mild rash or even just spots on her skin. The nurse said that having her tonsils and adenoids out last October was a wise decision. Since then, her throat infections are not near as severe and her fevers don't get quite as high. Yayyy!!! She nicely said that anytime Emily shows sign of infection we must have her seen by her pediatrician as soon as possible so that she may be treated with medications that will help her body fight the infection. With severe neutropenia, patients can develop a wide range of infections that can be life threatening when the patient is severely neutropenic very often.

I hope I have explained things well. I tried to type notes as I was talking with the nurse. Overall, Emily has been doing quite well lately. She is learning how to better deal with her fevers each time that they come. We have learned how to better deal with her having fever as well. Happy Being at home with a sick child really is a lot easier than being in the hospital! During Emily's second year of life, she had 9 lengthy hospital stays between Baptist South in Montgomery and Children's Hospital in Birmingham. We are hoping that this year will be much better. So far, so good! It feels good to finally have a real diagnosis. I think not knowing what was going on with her was the hardest thing to deal with. Through the whole time, though, God has proven faithful. He has been absolutely amazing to provide us with wonderful friends and family that have been there for us in so many ways. Most importantly, we thank you all for your prayers! Please keep them up. I honestly don't know how people make it through tough times without the hope that God gives us as Christians. Thank you all, again, for everything!!!

With love and heartfelt thanks,
Courtney