Hello! Glad you found your way back to CWE! I joined CWE as a parent of a daughter with JME. We started dietary changes in June, following the MAD guidelines. I am amazed with what we are experiencing. My husband and I are also following the diet (the low carb part... Not the high fat part) and have never felt better! I am interested to hear more from you regarding your food plan and lifestyle. My daughter is 15 and we are gearing up for the college experience!
Hi chop! Thank you!
I'm glad to hear the dietary changes are resulting in positive benefits for your entire family! Congrats on your progress!
As for my personal experience, there has been quite a bit of trial and error. There are a few guidelines I try to stick to, but of course I have to occasionally make exceptions.
I'm sure these aren't mind blowing ideas, but it's what's working for me.
(In no particular order)
1. NO BOXED FOODS - I try my best to make everything from scratch. This means, no additives, preservatives or other unnecessary "stuff". This can be very time consuming, so I try to store food for later meals, or make just enough for one dish. Also, I try to use ingredients in multiple dishes to avoid waste.
2. NO ALCOHOL - I will make exceptions for a 1/2 glass of champagne at a wedding or special occasion. (Man, were my twenties boring!
3. NO SOY - EVERYTHING HAS SOY! Even bread has soy... This have proven to be quite the challenge. When I eat soy my head gets extremely tense and leads to migraines.
4. LESS MEAT - I cut back on how much meat I was eating. I was raised in the south, and every meal included meat. Now, I eat meat about twice a month. I make sure it is organic, free-range and grass fed. And, 2 out of 3 isn't bad!
5. NO MILK - I switched to coconut milk, and I occasionally drink almond milk. I used to make my own almond milk, but it's just too expensive. This is one of the few items I buy prepackaged.
6. LOTS OF SLEEP - Not only do I love sleep, but lack of sleep contributes to seizures... I get at least 10 hours of sleep a night. And, I'd sleep longer if I could!
7. NO PHARMACEUTICAL DRUGS - I realize this is a BOLD statement, and most people do not have this luxury. I am not saying this will work for anyone else. That's all I'll say about that.
8. NO STRESS - This is a laughable statement, but i try my best to not be stressed. Stress will cure nothing, and it will only make things worse. I meditate daily before bed and listen to "healing" music while I sleep. I've also tried other forms of energy healing, and I typically feel more calm after the experience.
9. RAW FOOD - Eat as many raw fruits & veggies as you can! (If I cook veggies, I typically steam them as little as possible.)
10. WATER!!!!! HYDRATE! HYDRATE! HYDRATE! There are so many acidic foods and drinks, that I started drinking high PH water to counter-balance the affects of the acidity.
11. VITA GREENS - I have a green smoothie each morning before work. OJ, Banana, Kale & Coconut is a yummy one!
I hope this is helpful! Again, I'm not saying this will work for everyone, but this has been working for me so far. My seizure activity has drastically reduced.
