Life with The Leivas: Day +131, Clinic or Social Hour

Tuesday, December 1, 2009

Day +131, Clinic or Social Hour

Today the plan was to go to clinic and have Olivia's labs drawn, then get her CT scan (from her head to her pelvis), and then head back up to clinic to see what her white blood count was.

Instead we went to clinic, ran into several friends who were in the hospital when Olivia was in the hospital. Saw several of our favorite nurses both from clinic and from 5200 as well as some of the members of the family support staff. Everyone is pretty much in the same boat in terms of not being allowed out of their houses/apartments to socialize so it's nice to talk with other adults, even though we're in an isolated hospital waiting room for PBMT patients instead of a coffee shop.

They did draw Olivia's labs but we didn't go down to have the CT because we are still waiting on the pre-authorization from our insurance company. The CT will be rescheduled for later in the week. They did want us to wait to see what Olivia's white blood count was so we went back to the isolated waiting room to socialize some more.

The nurse practitioner came in to let us know that Olivia's white blood count is down. It's only 26.7 today which is still well outside the normal limits but much better than yesterday's 40.7. Wednesday is our long clinic appointment day so we'll see what tomorrow brings.

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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.