The Story Of...
Lauren's Miracle
 
You breathe a sigh of relief when your children are born healthy.  Little did we know that six years after the birth of our first child, we would endure the most heart wrencing medical crisis of our lives.

It all began on December 1, 2006 when Lauren fell to the kitchen floor and began violently convulsing.  After a scary ambulance ride to Children's Hopsital, we were discharged and told it was just a fluke!  However, three days later Lauren was diagnosed with Childhood Absence Epilepsy.  We felt relieved because we were told that Lauren would eventually outgrow her epilpesy and that her seizures would be easily controlled by medicine. 

Unfortunately, our feelings of relief only lasted a few days.  Lauren immediately had severe reactions to her medications (extreme hyperactivity, violent rages, loss of speech, deadly rashes, lethargy, confusion and bodily pain).  Over the course of three months, we tried 7 different medicines but Lauren kept getting worse.  Her seizures were increasing and changing and she began to develop autistic characteristics.  Once considered to be extremely intelligent, Lauren could no longer recite her numbers and alphabet.  In addition, Lauren could not dress herself, brush her teeth, go to the bathroom, walk up the stairs, sit in a chair without falling, play with her siblings or even hold a simple conversation.  A typical day consisted of dozens of violent temper tantrums and the heartbreaking witness of watching my child struggle to socialize with her younger siblings.  She could no longer play and instead became trapped within her own little world.  I would call our neurologist everyday in tears, begging them to do something because their cure seemed worse than the disorder itself! 

At this point, we were counting over 50 seizures a day (tonic clonic, myoclonic, absence, atypical absence, drop attacks, tonic and complex partial ) and they seemed to be getting worse by the week.  Finally, in March of 2007, three months after her initial diagnosis, our doctor agreed to do a 24 hour video EEG.  At the conculsion of the test, her diagnosis changed to Lennox Gastaut Syndrome, the most devastating and debilitating form of childhood epilepsy.  The EEG revealed over 300 seizures in a 24 hour period.  Lauren's prognosis was horrific.  We were told to expect increasing amounts of seizures and permanent mental retardation.  At this point, there were only two treatment options left: the Ketogenic Diet and the Vagal Nerve Stimulator(VNS). Lauren's neurologist told us that the diet would be near impossible with four children in the house and there was no guarantee that it would even work.  Despite what the doctor told us,  I had the feeling that the diet was meant to be and I was determined to make Lauren well again. 

In April 2007, four months after her 1st seizure, we were admitted into the hospital for our five day Ketogenic Diet Initiation.  At the end of our stay, Lauren was in high ketosis and well on her way toward recovery.  Her uncontrollable tantrums ceased immediately and she was more aware of her surroundings.  By July, Lauren's seizures were reduced by 90%!  Another EEG still showed constant subclinical seizure activity that was keeping Lauren from learning any new material at school.  So, In August we had the VNS implanted.  Within three weeks of the surgery, Lauren was off all of her medication and showing amazing signs of cognitive improvement and freedom from her seizures. 

In Novemeber 2007, a 16 hour video EEG confirmed that Lauren was 100% seizure free and had no signs of cognitive impairment.  God had given us a Christmas Miracle!  Lauren will have the VNS device indefinitely and she will be on the Ketogenic Diet for at least 2 more years.  A small price to pay for a healthy child!  I believe that Lauren's suffering  and miraculous recovery were meant to inspire us to spread the word about the Ketogenic Diet and VNS Therapy.  Lauren was able to recover 100% because we stopped her seizures  VERY EARLY into her diagnosis.  Had we waited any longer, I am certain that her mental impairments would have been permanent.  God's grace, our aggressiveness and perserverence saved our child's life!  Please help us in our mission to spread the word about the diet and VNS Therapy!!

The diet and VNS therapy are typically offered as "last resort" treatment options after all available medications have failed to control an individual's seizures.  Exhausting all medication options can take several years for most children and adults.  In many cases, this time lapse can have severe consequences for a small child (permanent developmental delays and physical and mental regression).

Our mission is to arm parents and caregivers with enough information and confidence to insist on the Ketogenic Diet or VNS Therapy after
2 medicines have failed to completely control their child's seizures!  These alternative treatments can completely eliminate seizures in a great deal of children....why should these poor children and their families be made to suffer and longer?

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"HELP US" BUTTON ABOVE & FOLLOW THE INSTRUCTIONS TO HELP US GET ON THE OPRAH WINFREY SHOW.



We can be contacted at: ketomom@laurensmiracle.org
Click here for more information on the Epilepsy Foundation
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Website released 2/18.08
Last updated 2/26/08