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Kelly Patient Expert

San Francisco, California
Jenelle is 5 and suffers from a rare form of Epilepsy called Lennox Gastaut Syndrome. Please feel welcome to follow her journey with this devastating condition.
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Results from the Video EEG Monitoring - a new game plan! by Kelly Patient Expert Posted in: Blog Posts in Epilepsy & Seizures I always joke, the best way to cure seizures is to leave the damn EEG leads on the child full time!  So, here we are, Day 5 and no seizure activity.  The EEG leads are final ... Read on »
Happy 12th Birthday Jenelle! by Kelly Patient Expert Posted in: Blog Posts in Epilepsy & Seizures Jenelle spent her 12th Birthday at CHOC, and the Child Life Staff made her birthday extra special! The family will celebrate Jenelle's birthday on Sunday with d ... Read on »
Video EEG Monitoring at CHOC by Kelly Patient Expert Posted in: Blog Posts in Epilepsy & Seizures Yesterday, Jenelle and I checked into our new home for a few days at Children's Hospital Orange County (CHOC.)  Jenelle was hooked up to a video EEG, and we'll be here anywh ... Read on »
CHOC WALK 2014 - WE DID IT! by Kelly Patient Expert Posted in: Blog Posts in Epilepsy & Seizures Jenelle at Mommy after the CHOC Walk 2014! Yesterday, Jenelle and I got up and out the door at 5:00 AM to participate in the CHOC Walk in the Park at the ... Read on »
We survived, but barely! First day of Middle School for Jenelle and other updates by Kelly Patient Expert Posted in: Blog Posts in Epilepsy & Seizures Well, we survived the MRI, the trip and exam at Berkeley, and now, the first day/week of Middle School ... barely.  Actually, I should have known better.  Jenelle has be ... Read on »
Update re MRI & UC Berkeley Eye Center by Kelly Patient Expert Posted in: Blog Posts in Epilepsy & Seizures All of the testing I previously mentioned in the last update for Jenelle has begun.  On August 21, Jenelle had a sedated MRI at CHOC.  Given this child's love for food, I wa ... Read on »
A long overdue update on Jenelle... by Kelly Patient Expert Posted in: Blog Posts in Epilepsy & Seizures Wow, so much to say... here we go! As you may recall, at our last appointment with Dr. Shields, he announced his official retirement and that it was the last time we'd be ... Read on »
Photos before updates by Kelly Patient Expert Posted in: Blog Posts in Epilepsy & Seizures I have a lot to update our sweet Jenelle about since my last post in ... gasp .... January!  But first, how about some adorable photos to give you an idea of why I've been s ... Read on »
Happy New Year - New Follow Up at UCLA! by Kelly Patient Expert Posted in: Blog Posts in Epilepsy & Seizures Did I really miss an update in December?  Wow, how time files.  Actually, there was not much to report until our follow up at UCLA yesterday.  We spent November and December ... Read on »
Since Health Insurance has been a topic of conversation lately; let me tell you a story... by Kelly Patient Expert Posted in: Blog Posts in Epilepsy & Seizures There has been a lot of talk about ACA/Obamacare and problems getting and keeping insurance ... It has me worried that this is just the calm before the storm.  Although we h ... Read on »
Updates from UCLA for Mommy & Jenelle by Kelly Patient Expert Posted in: Blog Posts in Epilepsy & Seizures Yesterday, Jenelle and I made the trip to UCLA for follow up appointments.  Jenelle's appointment was first at 11:00, where we met with Dr. Shields nurse Sue Yudovin.  Of la ... Read on »
11 Years Old! by Kelly Patient Expert Posted in: Blog Posts in Epilepsy & Seizures I know this is going to be a fantastic year for our Jenelle; after all, 11 is my lucky number so it has to be hers as well!  Wow, 11 years old!  8 years ago, I could never p ... Read on »
Almost to the end of Felbatol, and we battling pesky cluster seizures by Kelly Patient Expert Posted in: Blog Posts in Epilepsy & Seizures As we get close to the end of our almost year long wean of Felbatol, things are getting much more interesting with Jenelle's seizures.  This month, we've had a trip to the n ... Read on »
Please excuse my absence... life has been BUSY! by Kelly Patient Expert Posted in: Blog Posts in Epilepsy & Seizures Well, I know that I'm long over due for an update, especially when I log into the blog to type this update and can barely remember my password!  Gee, where did we last leave ... Read on »
Orthopedic Evaulation by Kelly Patient Expert Posted in: Blog Posts in Epilepsy & Seizures Jenelle had an appointment this afternoon with a new orthopedic doctor.  We were referred to Dr. Rosenfeld at CHOC because Jenelle's last Scoliosis x-ray showed a slight cur ... Read on »
Life is moving right along... by Kelly Patient Expert Posted in: Blog Posts in Epilepsy & Seizures I'm sorry to leave you all hanging.  2013 seems to be keeping pace with 2012, and moving all too quickly.  Here we are in the beginning of March.  Jenelle is doing very well ... Read on »
Happy New Year! Latest follow up at UCLA by Kelly Patient Expert Posted in: Blog Posts in Epilepsy & Seizures Happy New Year! We had a lovely Christmas and New Year's Holiday.  Jenelle really enjoyed playing with new toys and just cuddling with family.  I share photos from the ... Read on »
9 minute Absence Seizure by Kelly Patient Expert Posted in: Blog Posts in Epilepsy & Seizures You know me and my superstitions.  I hadn't mentioned it, but was about to say something.  That Jenelle was having a really good no-seizure streak.  Oh well, it was a good r ... Read on »
November is Epilepsy Awareness Month by Kelly Patient Expert Posted in: Blog Posts in Epilepsy & Seizures November 1 begins National Epilepsy Awareness Month. The color for Epilepsy Awareness is purple. Each year, I try to post information to help advocate and promote epilepsy a ... Read on »
Free from the Happy Pills! by Kelly Patient Expert Posted in: Blog Posts in Epilepsy & Seizures In early August, I decided to wean myself off my anti-depressants.  Today, I am happy to report that I have been completely off the Happy Pills for a whole month - and final ... Read on »