Life with The Leivas: Rough Day

Thursday, June 3, 2010

Rough Day

Today was a rough day around here. Olivia's health is good but cognitively she's all over the place. It's review time----she's being evaluated by the physical, occupational, and speech therapists for routine evaluations. It's also IEP review time. I can't help but think about where Olivia was several months ago. In September we were thrilled that Olivia was released from the hospital, we were actively working on potty training, she was still using words and hadn't lost any throughout the transplant process. She loved doing puzzles and was continuing to learn new things. I don't know what happened between November and June but she is not the same little girl. It's devastating. I love her dearly and it's terrible to watch her slipping away. I am really doubting myself lately. About 6 weeks ago we noticed that Olivia seemed to be very angry, she was becoming aggressive, she was biting and hitting people. I make a conscious effort to back off, to not push her all the time, I took a step back from my "therapy mom" personality and focused more on being a loving, playful mom. Today Olivia ripped a page out of Peter's baby book. I was devastated! I was angry and depressed. I was mad at myself that it was in an area that she could get too (the bookshelf in our living room). I was angry with myself for not being thankful that she's able to run and walk around and pull books off shelves. I put Olivia in a time out. She hasn't been in time out in weeks, I wasn't sure that she was getting the concept of time out so I stopped using time out about 2 months ago. Of course the time out today didn't make a difference to her at all. She was oblivious and had no idea why I was so mad at her.

Today sucked and I'm glad it's over. I'm tired and I'm still angry and I hate Sanfilippo syndrome.

1 comment:

Anna M said...: Oh Laurie, I hate you had a tough day. That's rough and compounded by Olivia having SF. Hugs to you. Being a mom on a bad day can be so lonely. I feel like I'm barely keeping my head above the water half the time and I can't imagine having to also juggle the special needs you have with Olivia. Take care of YOURSELF.; Thursday, June 03, 2010 9:49:00 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.