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The National Alliance on Mental Illness (NAMI) indicates the stigma surrounding mental illness creates an environment of shame, fear, and silence that prevents many people from seeking help and treatment. There is not a single one of us who has not been impacted by COVID-19. And for warrior families caring for a loved one with epilepsy, every emotion is amplified. Anxiety, depression, loneliness, and fear can leave our community with little to hold on to.
These are the times we must show up for each other. Now more than ever, the awareness around mental health is crucial. Mickie’s Miracles CEO and Visionary founder, Kristie Griess shares her story on mental health.
We would love to hear from our warrior families how you are managing your mental health.
“Personally, I managed my mental health while Mickie was seizing by pure survival mode. I trusted my maternal instinct and spoke up even when the white coat in front of me disagreed. I prayed every day to God for a miracle to save our daughter. I shut out the world and focused on her and our family. When we returned from the hospital after brain surgery, I was a basket case. I remember yelling at our 18-month-old son, Preston, for a throw pillow being out of place. I knew I had to do something. Somewhere in the recesses of my soul, I thought if I could keep my house and world in perfect order then my daughter would not die. I started by hiring a babysitter which allowed me to take yoga classes a few times a week. I prayed and meditated. Most importantly, I began helping other families navigate their epilepsy journeys. When our kitchen table ad hoc telephone hotline became so big I couldn’t keep up, God told me to start Mickie’s Miracles. Since then I have found a lot of peace and guidance in reading the Bible daily.”
Warrior Mama Colleen and Warrior Baby Owen share their families’ story on how they’ve dealt with the trials of this pandemic.

When Life Gives you Covid and You’re All Out of Lemons

Treating epilepsy during a global pandemic.

 

Back in March we had reached our wit’s end with our trial of the ketogenic diet for our son. As an epilepsy treatment, it was extremely effective, we got a long stretch of seizure freedom and had become pretty clever in the kitchen (with the help of a CHOC-appointed medical dietician, of course). But after 6 months those pesky seizures came roaring back and the timing could not have been worse. I found myself in the middle of the coronavirus outbreak with a kid who needed immediate medical attention.

One doesn’t simply just pick up a donut and say goodbye to keto in one quick meal, it’s a risky process that needs medical supervision, so what happens when you can’t go to the hospital and you can’t go the clinic but you also can’t find butter at the supermarket because the shelves are bare and seizures are relentless??!! I literally could not continue the diet even if I wanted to and just to be clear, I also did not want to. My son needed a new treatment option and FAST.

So first thing our epileptologist did was ask for videos of the persisting seizures and email them to her ASAP. It took me a few days to catch a few, but after I had the footage on my phone, I uploaded the videos to YouTube, put the settings on private and e-mailed the links to my doctor. Because video files are often too large to be emailed, sending a private YouTube link is a great option for ease of sharing. Once she received and reviewed the videos, it was time to have a Telehealth clinic appointment. I got an email from CHOC with a zoom link and some instructions on how to use the software.

I decided the best thing to do was to put a dedicated camera on my son so his doctor could see him and have another one on me so I could do the talking. What I didn’t account for is, that when you have 2 devices in close proximity in the same zoom meeting, it creates an obnoxiously loud feedback noise. So when our doctor showed up on camera, we greeted her with the equivalent of a digital megaphone to the face.

But anyways, we worked through that and were able to have a very productive appointment. We agreed to some medication adjustments and BEST OF ALL, our Doctor got to see our son in his own environment! Not attached to an EEG in a hospital bed, or anxious because he’s in an exam room, he was 100% authentic Owen and that is so valuable for our Doctor to see. Since then we’ve gone on to have several Telehealth appointments and I can honestly say that I am grateful to have this new style of clinic appointment available to us. Not only were we able to avoid possible exposure to Covid 19, but our Doctor got an intimate look at our son in his natural habitat.

Follow all Owen’s medical adventures at @keep_goin_owen

 

9 Responses

  1. Rastreador de teléfono celular – Aplicación de rastreo oculta que registra la ubicación, SMS, audio de llamadas, WhatsApp, Facebook, fotos, cámaras, actividad de Internet. Lo mejor para el control parental y la supervisión de empleados. Rastrear Teléfono Celular Gratis – Programa de Monitoreo en Línea.

  2. La mejor aplicación de control parental para proteger a sus hijos – monitoriza en secreto GPS, SMS, llamadas, WhatsApp, Facebook, ubicación. Puede monitorear de forma remota las actividades del teléfono móvil después de descargar e instalar apk en el teléfono de destino.

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