Monday, October 27, 2008

Sara's story...the beginning

My husband & I waited to have a child. When one of us wanted to try, the other wasn't sure & we went back & forth for a while. Then one day, we thought we'd try and our sweet Sara was born on March 24, 2007. She was actually due on St. Patricks Day but she must have decided she didn't want to be green :) She was what I prayed for... the light of my life. 10 fingers, 10 toes, perfect & beautiful. I couldn't have been happier. Little did we know we were in for one heck of a road.

Sara was fine for the first 2 months of her life. When she was born, her APGAR scores were 8's & 9's. She passed her hearing test... all looked good. At 2 months of age Sara had one day that she spent "scaring" herself... the entire day. I didn't know what was going on. I called the doctor & he said "put her on her tummy, they can't scare themselves on their tummies". "OK" I thought, and that's what I did. Sara sacked out & slept for a few hours. I was like, well that worked! A couple weeks later, on Memorial Day of '07, she did it again... half the day she spent constantly scaring herself. We had a pediatrician appt the next day... that was when her doctor thought she was having seizures. Right then our world came crashing down.

Within a couple of days we had an appointment at Children's Hospital for an EEG to see what was going on in Sara's little brain. Results confirmed our worst fears. Sara had been diagnosed with Infantile Spasms (or West Syndrome). I didn't know what to do except cry...and cry....and cry some more.

She was admitted to the hospital that day and further tests were done...MRI, CAT Scan, bloodwork... the MRI showed her brain was not growing. The spasms are very hard on the brain & would not allow her to grow & develop normally. Her first neurologist told us that Sara would never walk, talk, go to a regular school, be able to dress herself... I was blown away and again all I could do was cry. We then were introduced to another neurologist who gave us atleast a slim chance at some hope that we could get the spasms under control and hopefully start to see some improvement in her development; but the likelihood of more seizures taking over after the spasms was very high... it seems with the Infantile Spasms that kids often go from one seizure type to the next throughout their lives... at least, statistically speaking.

So, we decided to go with the 2nd neurologist to follow Sara's care and told the first that if he ever came near our daughter again he'd be sued. How dare he tell us those things about our daughter? How could he know. This is when mommy started to get tough and the tough got going!! Options for medicine were discussed. There are only 2 that work the best for the spasms. Vigabatrin (which comes out of Canada) and ACTH (a drug that must be given as injection). We took the lesser of the 2 evils 1st and went with Vigabatrin. After a short time I thought it was working...on the outside Sara was becoming more "normal" and she even started to smile a little. But, when we went for a follow up EEG it showed little improvement on the inside. I never will understand she could look so good on the outside but still be a mess on the inside? That didn't make sense to me at all. So, the ACTH had to come in. That was tough. I could not bring myself to give Sara an injection each day. Thankfully my mother-in-law was a nurse so she did it. Sara had a reaction to the medicine that we were sent home with, & it put us back in the hospital for a couple days. We thought it was a bad vial, but noone would help us look in to that. It happened twice and thankfully by that point we were ready to come off it because it had worked -- within 2 weeks it had taken away her spasms. However, shortly before we were completely weaned off the ACTH, new seizures started. These caused her to stop breathing & Sara would literally turn blue. My heart stopped & we rushed her to Children's ER.

There started our last hospitalization to this day but it was a 3 month stay with nearly all of it spent in ICU Units.. We were in from July - Oct '07 and it was miserable. Her seizures were horrible & she would have them in frequent clusters. They were determined to be Complex Partials & they were coming from both sides of her brain... was it good the spasms were gone? I didn't know which were worse at this point and my world was spinning so fast I didn't know which end was up. My life had stopped & I was living at the hospital.

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