pediatric neutropenia

I have been thinking about sharing this for awhile. I thought I should share what's been going on with Jude's health because there might be others out there who could relate, but I just had not gotten to writing it down yet.

Last May, Jude had a low-grade fever for a week with no other symptoms. We were checking his temperature daily, but he seemed fine besides the fever. He had seen the ENT for his ears, but he wasn't a shoo in for tubes so we did not do them. He did have a lot of ear infections so I assumed maybe this was the same. We went into the doctors a few times that week from what I remember, but they just weren't sure what it was that was causing the fever. After a week with the fever, our pediatrician recommended having his blood checked to see if that gave us more of an idea of what might be going on.

So the blood drawing started. Let me tell you, blood drawing with a less than two year old is not a fun procedure, especially with sometimes impatient nurses and tiny veins that tend to be missed requiring multiple tries. The first blood draw indicated his neutrophils were low. Neutrophils are the part of the white blood cell that fights infection and my understanding is that can fluctuate when you are sick and your body is using the neutrophils to fight the infection.

Test again a few a days later...still low. All of the specific blood drawings are a little bit blurry to me because we did it so many times. After two or three drawings, many tears, our doctor expressed her concerns about his neutrophils and recommended we see a hematologist at the Boston's Children's Hospital. Low neutrophils can be a sign of leukemia so naturally, I assumed the worst and cried and worried all week. The Children's Hospital is wonderful and world-renown and we are lucky to be so nearby.

We had Jude's blood drawn again there and met with a hematologist. He quickly dispelled any concerns I had with leukemia knowing that would be on my radar. His suspicion was that it was a condition that children randomly have and spontaneously outgrow called "pediatric neutropenia." Many kids have it and just do not realize it.

So this was and has been our treatment of it for the last 6 plus months:

  • Good hand washing (by Jude and people around him) - harder than you think. It surprises me how many people will feed my child without asking. 
  • If he has a temperature above 101, we typically have to have his blood drawn and neutrophils checked. 
  • If he has low neutrophils, he has to have an antibiotic shot coverage, which is a terrible painful two day series of shots in his legs to compensate for his low neutrophils possibly not being able to fight off an infection. We have only had to do this once. 
  • Check in with the hematologist in Boston every three months to check his neutrophil count. I imagine it will have to be up for a few visits for our doctor to believe he has outgrown the disorder. 
We are really grateful that hand washing, a little caution and a trip into Boston every few months is our treatment. I just thought I'd share in case anyone has had similar experiences. We are so grateful that our doctor does not yet suspect that he has Cyclic Neutropenia, which would affect Jude throughout his life, but are still praying that he grows out of it soon. 

He really has acted like himself through this whole ordeal and has given us confidence that it is a temporary condition that we will hopefully see the end to soon. 

Sorry for such a wordy post - but maybe you learned something new today ;)

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