The Waiting Game...

So we went to Texas Children's Hospital again on January 24th to see the Hematologist. Paxton's neutrophil counts pretty much stayed in the severe range during the 6 weeks of testing for cyclic neutropenia. Most cyclic individuals are low for a short period (5-7 days) and then their counts go back to normal during the remaining 3 weeks of the month. There are some rare cases where someone with cyclic neutropenia stays severe but that is hard to identify as cyclic. So what I am basically telling you is that they do not think Paxton has Cyclic Neutropenia.

So that means more tests. So at the last visit they tested for the anti-neutrophil antibody, and two genetic tests (HAX1 and ELA2). The anti-neutrophil antibody test is to check for just that. In some people, a severe virus can cause their immune system to go haywire and their body can produce an antibody that will attack neutrophils so they cannot completely mature. This is Autoimmune Neutropenia. In most cases, children outgrow this by the age of 5. The problem with this test is there are many false negatives. So if you have a positive it is positive, but if you have a negative, it may be inaccurate and may really be positive.

The genetic tests are checking for mutations on the HAX1 and ELA2 genes. This is checking for congenital forms of neutropenia. I honestly do not know exactly what forms of neutropenia these are linked to because I am scared to death to research it. I know one form is Kostmann's. These will be more severe forms that also have much higher risks associated with them. These are forms that do not go into remission. Hopefully, PLEASE GOD, these come back normal.

So today has been two weeks since the last appointment. We were told about 3 weeks for results. Believe me, I have been checking to see if there are any results back yet. Our next appointment will be in 2 more weeks (Feb 21st). So our new routine if Pax gets a fever of 101, or higher, will be to go the hospital and they will do a blood count and a culture. She will get an antibiotic IV and will be admitted for a minimum of 48 hours to wait and make sure the culture is clear of any bacterial infections.

So as always I beg that you pray for us, and please spread our prayer requests far and wide. I will also try to start posting more happy thoughts! I know you all want to see pictures of our precious Paxton!

Love and God Bless,
K