Life with The Leivas: Your White Blood Count is WHAT!!! Day +130

Monday, November 30, 2009

Your White Blood Count is WHAT!!! Day +130

We didn't have a scheduled appointment time in clinic today, they told us to just come in when it was convenient. We had to wait in the isolated waiting room for over 2 hours before we were able to get into an exam room and continue to wait to see someone for another hour. That will not happen again, only scheduled appointments from now on please!

The nurse practicioner came in and told me Olivia's white blood count (WBC) was 40. Normal range is between 3.8 and 14 so Olivia's WBC is obviously elevated. Typically when someone has a high WBC it indicates a bacterial infection but that isn't always the case with transplant patients. Basically everyone is confused. Olivia looks good, she's feeling good, she's eating and drinking. She looks and seems pretty healthy with the exception of her crazy high WBC. She is on an antiviral and an antifungal that she's been on since her transplant. She started a 7 day course of an oral antibiotic this past Wednesday and just finished up a 3 day course of IV antibiotics. But her WBC is continuing to rise. They switched her oral antibiotic today and they ordered a CT scan for tomorrow in hopes that they can gather some more information to figure out what's going on. They did 2 sets of blood cultures last week and they are all negative thus far. They did another series today, testing for things like adenovirus and Epstein-Barr Virus. We'll just have to wait and see what happens.

I'm scared, we were expecting to be given the okay to go to Fayettville and now her WBC is high and no one seems to know why. I hope we'll

2 comments:

Brandy said...: Oh man. I am so sorry Laurie. Hopefully it will be nothing. We will keep saying our prayers for Olivia and your family. Hang in there and before you know it you will all be together in one place :); Monday, November 30, 2009 7:23:00 PM
Ashley said...: hmm, we'll be praying for her!; Monday, November 30, 2009 8:45:00 PM

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MPS/Sanfilippo Syndrome

In October, 2008 Olivia was disgnosed with MPS III or Sanfilippo Syndrome, type B. MPS stands for: Mucopolysaccharidoses. It is a genetic lysosomal storage disease (LSD) caused by the body's inability to produce specific enzymes. Normally, the body uses enzymes to break down and recycle materials in cells. In individuals with MPS and related diseases, the missing or insufficient enzyme prevents the proper recycling process, resulting in the storage of materials in virtually every cell of the body. As a result, cells do not perform properly and may cause progressive damage throughout the body, including the heart, bones, joints, respiratory system and central nervous system. While the disease may not be apparent at birth, signs and symptoms develop with age as more cells become damaged by the accumulation of cell materials.

Babies and young children with Sanfilippo Syndrome appear normal, but symptoms begin to appear with age as more and GAGs build up in the cells of the body. There are 3 stages to the disease. Stage 1 the child begins to lag behind peers and begins to display difficult behaviors. Stage 2 the child losing his/her language, becomes hyperactive, chews on everything, and has sleeping difficulties. Stage 3 the child slows down, becomes dependant for all mobility and loses the ability to chew/swallow. There is no treatment or cure for Sanfilippo. Life expectancy varies.