Valerie is smart and sassy. Loving and thoughtful. She gives the best hugs (on her terms only…lol). Valerie never gives up. She loves music, movies, coloring, reading, art, theater and shopping. She has the prettiest brown doe eyes ever.
Valerie is my 4th child and was born on September 11, 2001 (yes, you read that correctly) in Michigan. She was in distress immediately after delivery. Valerie was stabilized and sent home after 24 hours only to be readmitted 2 weeks later.
I knew something was wrong. She was turning blue in her sleep. The doctors found nothing and sent her home. I say nothing, but she had a brain bleed that they were not concerned about.
Then came a move to Texas and hope for better medical services. The first few years were rough. At one year old she had not met most milestones. Enter the first doctor to listen. Valerie was diagnosed with PDD and home services began.
By 3 years old, we noticed what we would later discover to be absence seizures. Another move, this time to Georgia.
By 5 years old, she was in special classes and had her first of many GTC seizures.
Around the age of 10 her already delayed cognitive learning had almost stopped as if frozen in time. At the same time, atonic seizures started (we wouldn’t know they were seizures for about 2 more years).
At age 12 we moved and found a new medical team. A big shout out to CHKD in Virginia. This began a new adventure in the world of epilepsy. We were introduced to many new meds and the amazing VNS. Also, by now Val was having GTC, atonic, focal and myoclonic seizures (about 100+/day).
In 2016, Valerie was formally diagnosed with LGS (after thousands of seizures and so many tests), and we were told her life expectancy was 20. I was devastated. In early 2018, we were introduced to a new medication. By now Valerie was having more than 300 seizures/day. We were desperate for help. We decided after many discussions to try it. It cut her seizures in half. We adjusted her VNS, another 50 or so seizures controlled. Excitement! Back down to about 100 seizures/day.
We moved again in late 2018. Hello, UNC Chapel Hill. The seizures started doing what they do best. They began to push through the meds. Can we please get a break?
For the next 2 years we faced a VNS replacement, multiple emergency room visits, and tried and failed at least 5 more meds.
In 2020 we agreed to an SEEG (29 holes drilled into my daughter’s head). It was horrible, but we needed it for this new implant that we were told was going to be wonderful. Bring on the DBS.
Initially we were not impressed, it wasn’t helping. We continued with emergency room visits and failing more meds.
We had our biggest scare ever October 30, 2022. There was medication shortage… Val ran out. She went into status and was life flighted to Chapel Hill. I was told to say goodbye. NOPE! She remained in the ICU until her meds were made available.
Over the last 2 years there have been more drug trials and failures, VNS and DBS replacements, and of course emergency room visits. We currently have a good med cocktail and 2 working implants, all of them are maxed out.
Valerie still has 60 to 100 seizures daily. Every doctors visit we hear that Valerie is his most difficult to treat patient. We continue with her team of doctors here in North Carolina and at the Mayo Clinic. We are working with genetics and will continue to try new meds. I remain hopeful. I have allowed all of my daughter’s medical info to be used for continued research. If anything can help to prevent any newly diagnosed children form suffering, then I feel our journey has had a positive impact.
We are actively involved in Special Olympics, our local library and any adventures we can find. Connecting with other LGS parents has been a tremendous blessing. My advice: network with the LGS community, follow your instinct (you know your child best), advocate for your warrior always, do something for YOU every now and then (I hike, camp, and read). Love every minute with your kiddo. I continue to truly cherish the time I have to love my daughter, Valerie. Thank you for reading about our journey.
-Written and submitted by: Valerie’s Mom, Heather
Updated 11/15/24 (KK)