Today was a beautiful day! We went to check out a new park but it was a little crowded so we couldn't stay too long. Olivia was more interested in people watching than anything else. She hasn't been in one place where there were this many people in a long time. She's still obsessively chewing on everything but it is a little better this week than it was the week before. The picture of her with her hand in her mouth and in Mike's mouth is pretty much how things are. She isn't chewing, she just needs to have something in her mouth constantly. I don't know if this is just a phase or a new normal, I'm trying not to worry too much about it, I'm just trying to keep her hands clean.
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.
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