Amino Acids (Seizure control OR seizure spike)

https://www.facebook.com/groups/998559130772179/permalink/1115218845772873/

For the past 6 months Kam’s seizures spiked. He went from averaging up to 2 a night to having them during nap time & bedtime til morning. It took me a LONG time to realize why. Kam’s brain has started to adjust to the Epidiolex. (He’s been on it since 9 months old) this often happens in many kids. So as time goes on the Epidiolex is less and less effective for him. He was at his max dose for his weight. (Whenever his weight went up even 1 lb his seizures would increase until the dosage was adjusted and then within 3 days of seizures would be down again.)

We tried CBD and any more than 5mg increases his seizures so that didn’t work. I only give him 3 drops 2x a day and that eliminates the Dystonia (with the Lunarich) both have to be taken together. 

I have added a few new supplements. One many of you may already know it has much success with people with Epilepsy is the Amino Acid, Taurine-which plays a HUGE role in the Central Nervous System. The sole reason why I chose this brand is based on the epilepsy reviews below from Amazon please take a look. (Also extremely effective in the treatment of mitochondrial disease.)

I started to give Kam 1/3 of a capsule of Taurine that which comes to just over 300g. I gave 1st dose at 8:30am and he falls asleep around 6pm (late nap) (first day first dose no nap seizures!) First time in over 6 months that has happened. Based on his response I gave another dose at 8:30pm and have kept with those intervals 12 hours apart. 

It’s has a VERY short half life. It does need to be given more than 1x a day. It might be because of Kam’s lack of movement that I can get away with giving to him 12 hours apart. A benefit of Taurine is it increases oxygen to the brain which I think is why it works so well. I now believe Taurine is one of the best supplements for seizures also no sleepiness. If this continues I can pull back on other things 🙏💜

https://pubmed.ncbi.nlm.nih.gov/12908638/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5933890/

https://www.sciencedirect.com/science/article/abs/pii/0006899375900633