January 21, 2019

After almost two years of trying out various pharmaceuticals to both control David’s seizures and keep his behavior/personality intact, we have run out of options. Unfortunately, our insurance decided not to cover Epidiolex, which was literally our last pharmaceutical hope for David. Apparently, his form of epilepsy isn’t severe enough, even though many kids don’t survive the disease, and most others experience severe brain damage.

Thankfully, I put my faith (and my son) in the hands of a much higher power than the insurance company.

We have decided to move forward with VNS (Vagus Nerve Stimulation), which I can most easily describe as a sort of pacemaker for the brain. David will undergo surgery tomorrow at 7:30am. The surgery involves making a small incision near his left armpit, where the device is to be implanted. There is also a small cut in the neck to gain access to the vagus nerve. A wire will then be connected to the vagus nerve and tunneled down to the device. The device will then be customized to best fit David’s needs. This means figuring out whether or not he needs a low setting, high setting, etc. His neurologist will be in control of the settings. We will have a magnetic device to hover over the implant in the case of a breakthrough seizure.

This is generally an outpatient procedure. If all goes well, David will be home within 48 hours. He will need to stay home from school for a week to recover, and will have to avoid strenuous activity for a month.

I’ve had a few people ask me why we’re moving forward with surgery when David’s seizures are generally well controlled, so I’ll address that here.

There are a few possible outcomes of VNS regarding seizures. Some experience complete seizure freedom. While that would be wonderful, we’re under no illusions that this is likely to happen with David. If it does- that’s great! If it doesn’t, that’s great too- many who don’t experience seizure freedom, at least see a reduction in seizures and recovery time. This is what we’re hoping to see. Some don’t see a reduction in seizures but do see a difference in behavior. Like their child has woken up from the medicinal fog they were in. The child is then able to do better in school, focus, and have a better quality of life.

Overall, a better quality of life is what we’re hoping for David. He’s been through enough. He deserves it.

Thank you all for your love, prayers, and support during this time.

On a brighter note- as I mentioned earlier, it has been almost two years since David’s journey with FIRES began. I know some of you are thinking, “on a brighter note?” like I’m some sicko- and yes, I mean “on a brighter note.” Instead of wallowing around in a “woe is me” pity party, we have decided to throw a party and celebrate how far we’ve come since day one! David is no longer in a coma! He has survived two years of this horrible disease! God has brought him (and us) through the worst part of it, and we think that is worthy of celebration! We don’t have a date for the party set yet (it depends on how quickly David recovers from the surgery), but I look forward to sharing the photos with you all.

I will update again as soon as the opportunity presents itself.

Much love.

3 comments on “January 21, 2019

  1. Tonya Kervin

    Desi and Jonathan y’all are AMAZING parents and I’m so proud of the way you have dealt with this journey you have gone through. I know it hasn’t been easy on y’all. God knows what’s best for David and knowing and talking to you you have done your research, you know what’s best for David, and you have prayed and watched him go through this horrible disease(FIRES). Having to take care of him everyday and trying to understand what’s the best route for you to go is overwhelming. I pray everything will go as planned and Little David can get some relief from having all these seizures, that it will help him with his school, and his temper due to all the medications he is on. I will also pray for you, Jonathan, and Gabe as well. I love you Desi and I just wanted you to know that you and Jonathan are great parents and it shows. Your Gabe is also an amazing brother to David. I love how they love one another so y’all need to to pat yourselves on the back.

    Love Always,
    Tonya

    Like

  2. Hi. My daughter has epilepsy. She is 26 and doing great. I will be following you. Good luck and God bless.

    Like

  3. Susan IvinsLewis

    David and your family are always in my prayers and heart. You are an inspiration to many. May God bless you all.

    Like

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