Ben's Story - how it all began

On March 1, 2007 Benjamin David made me a mom.  We knew he was a blessing from God the day he was born and we continue to marvel at the joy he has brought to us.

I had a normal pregnancy, a normal delivery, and everything went according to plan. 

We nervously brought home our new baby unsure of the future, but so excited to begin our journey of parenthood.

Ben met all of his developmental milestones.  He was a busy baby and toddler.  From an early age, he has loved baseball, golf, and playing the drums.

He had his first seizure in June of 2009.  We were visiting with my parents and staying at my Uncle and Aunt's house in the Northeast.  We had just spent the day at Storyland and had an amazing time!  It was a perfect day.  I grew up going to this magical place as a child and I was thrilled to get to share the experience with Benny.

He rode on rides, walked all over the place, laughed, touched, climbed, explored, and had a fabulous time.  We wore him out! 

We went to bed and there was a cool rain that moved into the area.  I was sleeping next to him on the trundle bed.  All of a sudden I heard a loud noise and felt him shaking.  I yelled for Leeon to turn on the lights and realized that something was very wrong.  I had only seen one seizure before in my life, but I knew that Ben was having a seizure at that moment.

Leeon ran to get my parents so that we could call 911.  After what seemed like an eternity, the shaking stopped.  I held his limp body in my arms and I felt like I was losing him.  I know now that he was post-ictal.  But at that moment, I just cried out to God to bring my baby back. 

The EMT's arrived and we were transported to the local hospital.  They advised us to follow up with a pediatric neurologist when we returned home.  I will never forget the way those words sounded to me - I just kept thinking that they couldn't possibly be talking to us about our little boy. 

We returned to my parents house and enjoyed the rest of our visit, but the uncertainty of the future was weighing heavily on our hearts.

In September we visited with Dr. Perry and he assured us that lots of kids have seizures and we would run some tests.  He told us not to worry.  The EEG and the MRI results came back normal and we celebrated! 

In October, he had a few more seizures.  At this point Ben was put on Trileptal and with gradual increases we eventually got control of the seizures.  We went an entire year seizure free.  The doctor was happy, we were happy, and Benny continued to develop and grow normally.  We were so grateful to have somehow escaped the clutches of something more serious.

Little did we know that our journey was only just beginning.

1 comment:

  1. First of all I heartily congratulate you for Ben's seizure free days. I was really seeing myself when i read the blog of yours. My son Ram(3Y) is diagnosed of Doose syndrome since sept 2011. He has been trailed with a number of AEDs and innumerable visits to the neurologist. I must admit that there is seizure control and it is only the head drops or the atonic type that are prevailing now. So as a last resort we are planning to put him on ketogenic diet ( the hope ). Some how the neuro was not ready but on pleading hard he agreed .the drawback is the choice of food since we are vegetarian options for vegetarian ketogenic diet are few so hoping for the best.

    I believe in God's unconditional mercy and his love for children hoping to see my son cheerful and playing soon.
    Bless him.

    Lakshmi

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