Emma had another EEG this morning and an appointment with neurology to go over her Keppra levels. Her seizures have not decreased since being on the medication and they’re still waking her quite often throughout the night. The doctor wants me to keep increasing her Keppra and continue with the CBD oil. In the meantime, I am scheduled to attend an 8 hour seminar about the Keto Diet. This is all so overwhelming.
Basically the doctor explained that with Emma’s neurological history, it will be almost impossible to get the seizures under control, even with meds. I’m so upset there are no words. Hopefully the diet decreases the seizure activity.
Emma Bear's Journey 
My daughter has a similar situation. She is on Keppra and CBD oil but she is still having seizures so we are now looking into the Keto diet but I’m dreading the feeding tube part of it. I was curious of what ratio are you using for the CBD oil and have you noticed any difference?
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We only tried the CBD oil for a few weeks and didn’t see any difference in seizures.
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Ok, thank you for your response and for sharing your journey with us! Emma is a beautiful warrior!😊
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Thank you so much! I would highly recommend trying the Keto diet if you are hesitant to test out more pharmaceuticals. Didn’t want Emma being a guinea pig. It’s been almost 3 weeks and Emma’s seizures have decreased substantially. Her cognitive ability has improved and her CVI seems to have even gotten better. She has her eyes open more and is much more observant and aware of her surroundings. The diet is extremely stressful and intense but well worth it in our case. Let me know if you have more questions about it and I’d be happy to answer them as best as I can!
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That’s so great to hear that she’s doing better with it! If you don’t mind me asking…Are you guys doing it through oral feeding or feeding tube? what does her regimen look like?
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Oral feeding. It’s extremely time consuming and overwhelming. She eats 4 meals/day with 2 Keto milk drinks/day. She’s on a 3.27:1 ratio right now and we will slowly work up to a 4:1 once her body can handle such a high amount of fat.
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