This video discusses what we think is the best diet for Raelynn’s seizures. What works for her may not work for everyone. Talk to your doctor to explore options for you or your child.
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Raelynn has tried the Keto Diet for seizures in the past, but she had to get off of it due to other complications at the time. Now she’s on something similar to the Keto Diet, but not quite as extreme. Whereas the Keto Diet cuts out basically all carbs, Raelynn’s diet cuts out some sugar, and replaces it with fat, but not nearly as much as the Keto Diet does. Her diet is basically a low(ish) sugar and high(ish) fat diet.
Here’s how we make it. Raelynn, of course, needs water in her diet, so we start with 170ml of water. To that, we add 50ml of heavy whipping cream. And then we also add a bottle of Peptamen Jr. with Fiber. This, of course, contains sugar, but because we’ve added the heavy whipping cream, it dilutes the sugar so she gets less sugar per hour and more fat.
And that’s it. With this diet, in addition to her VNS, we’ve seen her average number of seizures go from (previously) 5 to 8 per day all the way down to 2 or 3 per day. It’s hard to know for sure whether her VNS or her diet was the biggest factor in that, but we think both contributed to her reduction of seizures. These are the best things that she’s tried to reduce her seizures.
Visit Raelynn’s website to learn even more! sunshinebaby.tv
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The links below show a few seizures Raelynn has had throughout the years:
▶️ 17 months old: youtu.be/6BEdEB-OJXw
▶️ 18 months old: youtu.be/XhZMx7GHzBk
▶️ 21 months old: youtu.be/WXOeCJKECb8
▶️ 2 years old: youtu.be/om0LVyj74Xs
▶️ Almost 3 years old: youtu.be/pVMUT-pg0zU
▶️ 6 years old: youtu.be/EYNXrQSr9ug
▶️ 8 years old: youtu.be/GcIrDB5qkT0
A few playlists you may find helpful:
⏩ Seizures: youtube.com/watch?v=…
⏩ Tobii Dynavox: youtube.com/watch?v=…
⏩ Assistive Equipment: youtube.com/watch?v=…
⏩ Medical Procedures: youtube.com/playlist…
⏩ Living Life with Disabilities: youtube.com/playlist…
ABOUT RAELYNN’S YOUTUBE CHANNEL
Raelynn has epileptic encephalopathy, global developmental delay, cerebral palsy, cortical vision impairment, and I could go on and on. In fact, I’ll go on a little more. Raelynn is quadriplegic. She has a gastro-jejunal (GJ) tube through which she “eats” all of her food. She has a vagus nerve stimulator (vns), and is currently getting intravenous immunoglobulin (ivig) treatments to hopefully help with her seizures. She regularly wears a shaker vest, uses a nebulizer, and a cough assist machine to help her breath better, especially when she seems extra susceptible to aspirating on her oral secretions.
Raelynn’s been to the doctor more times than the rest of our family combined!
In this whole situation, if we were looking for hope in our circumstances, we honestly wouldn’t find much. Raelynn will probably always be in a wheelchair. She’ll probably always be fed via a food pump. She’ll probably never talk. And she has virtually no chance of getting better.
I can’t tell you how many times people have told me, “God can heal her.” I’ve actually come to find it a little funny when people say that (and I’m a pastor!). I know that God CAN heal her, and I know that God will heal her in eternity, but the point of life is not that we wouldn’t have difficult circumstances.
God is using Raelynn exactly as she is right now. I see how much I’m a better person because of Raelynn. I see the ways God has changed my family, the things He’s taught us, the people He’s put us in connection with, all because of Raelynn’s problems. When I see how much God uses her disabilities, I see that God takes the bad things, the hard things, the hopeless circumstances of our lives and brings beauty, goodness, and hope from them all.
That’s what this channel’s about.
We post videos of Raelynn’s life, seizures, and other disabilities to this channel three days a week (Monday, Wednesday, Friday).
If this sounds like something you could benefit from, please consider subscribing! Your subscription will help us keep making videos of Raelynn’s life and assistive technologies! ❤️
#seizures #seizurediet #reduceseizures