Wednesday, September 1, 2010

The Last Two Weeks

Two weeks ago Paisley woke up about 11pm at night, which is unusual for her since she normally is a champion sleeper.  Since it was such an unusual occurance I thought she might feel bad since she was teething at the time and I brought her to sit with me and my husband until she went back to sleep.  While she was sitting with us she started to nod her head forward several times in a row. She was visibly upset by this action but my husband and I assumed she was just a very tired baby and must be having trouble with head control due to be so tired.  She went back to bed and our journey began. 
During the next week Paisley had four more similar episodes.  I made an appointment to discuss this with our pediatrician since she was also running a mild fever and was very fussy.  The pediatrician assumed it was a type of infection, started us on an antibiotic and sent us home.
After being on the antibiotic for a few days the movements nor the fusiness stopped.  A week after the first episode we ended up in the emergency room with our daughter as the seizures were getting progressively worse.  The doctor in the ER took blood and ran a CT scan which came back normal.  The doctor sent us home and suggested we follow up with our pediatrician the next day.
Before I had an opportunity to call the pediatrician she called me as she had scheduled an appointment for Paisley to meet with a pediatric neurologist the next day.  A week and a half after the we first noticed the movements, my husband, Paisley and I were waiting to meet with a pediatric neurologist.  We were prepared with a video of one of the episodes which I was blessed enough to be able to capture the day before.  Upon seeing the video the doctor sent us straight to the hospital to have test run.
We spent the following 24 hours in the hospital with Paisley were she had blood taken, a MRI, an EEG and a spinal tap.  She was such a brave her the entire time and even fell asleep during her spinal tap.  We are still waiting on the results of most of the tests but the doctors were able to tell us that she is having infantile spasms based on the findings from the EEG.  They also told us that since she has never shown any developmental delays or other medical problems she should have the best possible prognosis. 
Paisley is due to start a medicine called ACTH soon and we hope that it will fix the problem causing the seizures.
We have an appointment in two weeks to find out the results of all of the tests.

2 comments:

  1. Bonnie we are praying for you all! Thank you for sharing your story here! Your courage is amazing! Much love!
    Jenn Mitchell

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  2. Bon,
    We love you and Paisley, and we're praying all the time. Thanks for the posting to keep us all updated.

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