Life with The Leivas: Muscle Mania!

Monday, December 21, 2009

Muscle Mania!

They decreased Olivia's steroids last week and she's showing some dramatic improvement in her leg strength. She's able to get in and out of her bed all by herself. It was such a great suprise to see her walk into the kitchen this morning when I was having my coffee. I thought she was still asleep. She'd gotten out of bed all by herself, opened the door to her room and walked into the kitchen and said "hi mommy". So adorable! Olivia is getting better at walking up and down the stairs by herself and her balance is improving. She still has a long way to go but it's nice to see her getting stronger again.

I've also discovered that Olivia loves Christmas carols, she can even sing along with a few of them. We're such a festive family these days.

Olivia's weekly clinic visit is on Wednesday so we'll see how things go then.

No comments:

Post a Comment

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.