Dietary changes and seizure control

[KarenB]

I have already paid our deductible due to two hospitalizations for my son.

Now, Insurance is paying 100% and I did not even get to know about the cost of the Ketone Test.

Just out of curiosity - Do insurance companies cover the ongoing cost of AEDs or it is completely out of pocket?

Yes, they do cover AEDs but they don't like to cover the name brand ones, just the generic. The problem with the generic AEDs is inconsistency in the primary ingredient (they are allowed to have a 20% difference from the name brand, which can be significant with seizure meds). And a lot of pharmacies switch generic brands frequently, so that screws things up for a lot of patients. Jon's doc wants him on the name brand Zonegran, and our BCBS refuses to cover that, even with a letter of medical necessity. And it costs about $600 a month. Jon's medical expenses when he was having seizures easily reached the $100K mark annually, but once we spent the first 5K, then insurance picked up the rest. Still, that was $5000 out of our pocket each year.

 

[Jay1]

Blonde Angel, I just want to be sure you understand how admiring and touched I am by the deeply intelligent commitment you and the other parents who post here show in so many ways to the health of your children. Your thoughtfulness and care is wonderful and deeply moving to me.

So when I posted about how measuring makes me nervous -- it is true. My intention was to bowing out of Jay's invitation to be a part of his small survey. And I was speaking from my own situation and out of my own needs. Believe me, being part of a survey that involves any measuring would be counterproductive.

Hi Bidwell,

I feel that your upcoming EEG will be normal or at least show significant improvements. Your brain has functioned in an excellent way for many decades unlike lot of kids and adults who are having brain issues at a very young age. I see lot of thoughtfulness, openess and high degree of cognition in your posts. Your brain is still very young.

Please watch this 40 minute video

https://www.youtube.com/watch?v=szIUeYWRFN8


Thank you and have a great day.

Regards,
Jay

 

[Bidwell]

How can you write this? You do not know what my issues are or how my brain works. Who the hell do you think you are?

 

[Jay1]

How can you write this? You do not know what my issues are or how my brain works. Who the hell do you think you are?

See you did not have issues till 72 years of age. Did you get to eat any junk food and drinks laden with MSG, preservatives and artificial colors when you were growing up? I do not know if Taco bell, Mcdonald and other fast food chains even existed 60-70 years ago. Raw milk used to be freely available in your days. Mothers used to cook food for their kids. I mean to say that the food supply was natural and less contaminated in your childhood days. There were hardly any instances of Autism 30 years ago.

Most of the brain development happens in initial years of life. Our kids start eating all these exotic food laden with pesticides immediately after they are born.

My son got it at 9 (I accept 100% blame as father for not working on his nutrition earlier). Folks are getting at earlier ages - 2,7, 9, 15, 20, 27 years of age. We should not be getting seizures at these young ages. There is a acronym in computer programming - Garbage In Garbage Out (GIGO) and it applies to human body also.

Parents of current generation of kids (including me as parent) deserve lot of blame for messing up kids. If one parent is a junk food addict, then other parent needs to step up. Most of the mothers in today's generation do not have any desire to cook for their kids. They drink coke instead of water and serve zero nutrition pizza for lunch and dinner for multiple days in a week. What kind of example are we setting up for kids?

Yes, I do not know what your issues are (other than reading on your profile). However, I can infer from your posts that you eat healthy.

I am very optimistic and can bet that your upcoming EEG will show significant improvements. Prayers of other folks do matter.

 

[Keith]

Jay, thanks for the kind words. I've recently learned MCT oil is also antimicrobial, though I'm not sure how it compares to coconut oil. In some ways it's said better; see the infographic here:
MCT oil may act as antimicrobial while boosting performance of piglets and chicks
http://www.feednavigator.com/R-D/MCT-oil-may-act-as-antimicrobial-in-piglet-and-chick-feed

This paper talks about microbiota and MCTs:
Nutritional and physiological role of medium-chain triglycerides and medium-chain fatty acids in piglets
http://www.researchgate.net/profile...in_piglets/links/00b7d522eeb2c1c4dc000000.pdf

Of course, these are pig studies, but pigs and humans are said to have similar guts. Gnotobiotic pigs (germ-free) are used to study human health for this reason.

Another oil to consider/research is Black seed oil, nigella sativa, but I'm not sure it contains MCTs like coconut oil.

 

[KarenB]

That is interesting about the Thai kids taking to the keto diet like little ketotic ducks to water. I wonder if it is because they are used to consuming a high amount of coconut products and therefor don't get the digestive upsets some people can get when they try to push too much coconut too fast.

I do believe that's why. For one thing, many kids on the Johns Hopkins style Keto Diet aren't even put on coconut oil or MCT oil -- they give them cream with every meal instead, which doesn't work so well to bring on ketosis as MCT oil. So, the Thai kids probably have better ketosis levels and thus better results.

Another thing is a lower drop-out rate. Usually kids drop out early on due to tummy upset, but, as you mentioned, if the Thai kids are already used to coconut fat, they probably won't have as much distress. Another thing is that it's pretty easy to take a lot of Asian dishes, like stir fries or curries, and adjust them to a Keto meal. You basically just leave out the rice or noodles, keep in all the healthy low-carb veggies and seafood or meat, and add a little extra oil and/or nuts on top. Peppers are low in carbs, so the kids can keep eating their spicy food. And some of the favorite sweets, like coconut manna, are great for keto kids (as long as no added sugar). And fried seaweed chips, another favorite, work great on the diet.

 

[AlohaBird]

Another side effect that happens too often when the keto diet is skewed too heavily toward dairy is kidney stones. That could be another source of drop out numbers.

Hasn't JH been getting away from the gallons of cream approach in recent years?

Yes, Asian meals are often a big bowl of rice or noodles with a little of "the good stuff" on top. Give a kid a whole bowl of the good stuff and they will be happy.

 

[KarenB]

Another side effect that happens too often when the keto diet is skewed too heavily toward dairy is kidney stones. That could be another source of drop out numbers.

Hasn't JH been getting away from the gallons of cream approach in recent years?
.

Oh, yes, kidney stones -- that would be a big cause of drop out. However, Johns Hopkins protocol is to put the kids on Cytra-K crystals, which is a powdered mixture of potassium citrate and bicarbonate and citric acid, which acts as a buffer against kidney stones and acidosis (along w/ lots of water).

When we were living in Asia, we weren't able to get Cytra-K crystals, so Jon's pediatrician and I calculated out our own formula using lemon juice, Morton Salt Substitute (potassium chloride), baking soda, and Stevia mixed with lots of water.

That came in handy when we got back to the U.S., because Cytra-K went off the market for awhile, so I shared the formula with our Keto team here, and it got passed around. Now Cytra-K is back on the market, but most of us have opted not to use it, because we have gotten used to making our own homemade brew, and don't like the saccharin and red dye #3 in the crystals.

Johns Hopkins was still heavily into the cream when Jon was initiated on the diet 4 years ago. And apparently lots of Keto Centers are still putting the kids on it even now, according to the support group I'm a part of.

 

[AlohaBird]

Your home brew is probably cheaper too than paying for the pre mixed stuff with the fake sweeteners and dyes (blech!)

I approached keto from the paleo perspective so I was already pretty much off of milk products except fermented ones.

 

[Jay1]

Your home brew is probably cheaper too than paying for the pre mixed stuff with the fake sweeteners and dyes (blech!)

I approached keto from the paleo perspective so I was already pretty much off of milk products except fermented ones.

Hi AlohaBird,

Can you please explain step by step on how to do fermentation of various vegetables? I am a complete novice here.

Thanks for your help.

Regards,
Jay

 

[AlohaBird]

Well, I can point you toward some good sources for doing it yourself but I mostly buy mine with the exception of coconut yoghurt and kefir because you can't find that in stores.

Sandor Katz "Wild Fermentation" (pretty much "the bible" on the subject)
Sally Fallon and Dr. Mary Enig "Nourishing Traditions"

Plus Dr. Perlmutter has a how to section in the back pages of "Brain Maker"

I found a great online store that sells fermented veggies that don't have any fake colors or MSG which can be a bit of a challenge to find. It is called "Wild Mountain Paleo".

But it is much cheaper to make your own. I'm just lazy.

 

[Jay1]

I have been reading few Ayurveda books and came to know about few natural herbs that have been used for thousands of years in Indian subcontinent to control epilepsy. I believe in Ayurveda and it may cause me to become biased.

There are no available medical research papers. Copyright laws will not allow me to paste the entire pages from the books about those herbs. I can certainly write the names of books, authors, ISBN numbers and the names of herbs.

I have not used any of the herbs for my son till now. As of now, I do not even know where to get these herbs from. I do intend to use them.

Are CWE folks interested in more information?

 

[KarenB]

Your home brew is probably cheaper too than paying for the pre mixed stuff with the fake sweeteners and dyes (blech!)

I approached keto from the paleo perspective so I was already pretty much off of milk products except fermented ones.

Well, our insurance covered the Cytra-K crystals, but it's not expensive to buy lemon juice, baking soda or Morton Salt Substitute. I buy the Stevia leaves online in bulk (and a little goes a very long way, so I think the Stevia leaves run me about $12 every 5 months or so), and brew them in a tea ball, so there's no bitter taste (that many people detect with the processed Stevia, which I think is actually the other ingredients that are put in with it). Stevia is a natural anti-inflammatory and also counteracts the acidic effects of the diet, unlike most artificial sweeteners which have the opposite effect.

I'm thinking of growing my own Stevia next summer. Along with Jon's zucchini and yellow squash that he loves.

ETA: Trader Joes carries cultured coconut milk, but I think they only have the sweetened variety.

 

[AlohaBird]

I found some starter culture online that is specifically meant for non-dairy milks. Works well with the coconut. The nearest Trader Joes is on another island.

 

[KarenB]

I just came across this clinical trial of the positive effects of specific probiotics (Lactobaccilus and bifidobaccillus) on psychological distress, mood and anxiety/stress levels, which may have some application to epilepsy, as depression and anxiety seem to go hand in hand with epilepsy. Possibly some application to agitation and aggression in individuals with autism. (bold print below added by me)

http://jeffreydachmd.com/wp-content...terium-Messaoudi-British-J-Nutrition-2011.pdf

The beneficial effects of probiotics on anxiety and depression may be explained by competitive exclusion of deleterious gut pathogens, decreases in pro-inflammatory cytokines and communication with the central nervous system via vagal sensory fibres, leading to changes in neurotransmitter
levels or function(1,61–63). As for the first explanation, marked alterations of the GI microflora occur in autism, including increases in various Clostridium spp.,
competitively displaced as other potentially pathogenic gut bacteria by Lactobacillus (63,64).

Clostridium and Bacteroides spp. produce propionic acid, a SCFA increasing anxiety and aggression in animals(65), as well as increasing social isolation and stereotypes while decreasing play(66).

 

[Blonde Angel]

Hi Bidwell
You can only do what you feel is comfortable for you.. no one will knock you for that.

Thanks for your compliments, but I am only doing the best I can to what any parent who is challenged by all the crap that comes with having a kid with various health issues.
I do not want to have regrets in not trying to find the puzzle pieces for my girl..
that's all.

I do not like to judge anyone because we all have our own battles and this forum is about trying to convey not just the facts but I also need the experiences by others to try to understand what my kid is feeling sometimes... because sometimes the answer is in someone elses stuggles...

 

[Bidwell]

Blonde Angel, I THINK we are in agreement and I HOPE I am not judging anyone. And I wish for you and your girl whatever brings good for you both.

 

[Jay1]

but I am only doing the best I can to what any parent who is challenged by all the crap that comes with having a kid with various health issues.

It is very tough for parents. My journey has been much more easier than yours. My son is verbal but has faced difficulties in building friendships and understanding abstract thoughts. He is easily distracted by noises. The school has classified him in PDD-NOS Autism spectrum.

My knowledge about autism was very limited before. I thought that not everyone is extrovert and a social butterfly. My son has a good memory and knows all the current players in Australian cricket team even though he has never been to Australia. He loves to play numerous sports and he is fairly good also - baseball, cricket, basketball, soccer, tennis etc and I have encouraged him to do what he loves to do.

Not many folks will understand the emotions that an autistic child can feel. They can get isolated at school. Forget about others - even their own fathers and mothers may not make efforts to understand them.

What I did not know before is that 30-40% of the kids will go on to develop seizures and epilepsy. It is all related to GI problems and nutritional deficiencies. I curse myself everyday that my son would not have suffered from two status epilepticus if I had bothered to do more research and took charge of his diet earlier. The diet has tremendously helped in alleviating autistic symptoms also.

Lot of autism and different neurological problems in America have been caused by presence of neurotoxins such as Mercury and Aluminium in almost all vaccines meant for kids and adults.

I do not want to have regrets in not trying to find the puzzle pieces for my girl.. that's all.

Your words say it all. You are an awesome mother and your kids are seeing it everyday.

I do not like to judge anyone because we all have our own battles and this forum is about trying to convey not just the facts but I also need the experiences by others to try to understand what my kid is feeling sometimes... because sometimes the answer is in someone elses stuggles...

I wish I had joined this forum before. All of us are learning from each other's experiences.

 

[KarenB]

Have been reading about Nrf2, which is a sort of protein in the human body. It protects cells from damage, aids with detoxification of unwanted chemicals and toxic metals, and increases antioxidant activities. It is especially helpful in fighting inflammation and in forming new mitochondria.

Raising Nrf2 levels is helpful with a number of diseases -- epilepsy, along with cardiovascular, kidney, inflammatory bowel disease, diabetes, autoimmune diseases, etc.

Nrf2 seems to play a protective role in epilepsy http://www.ncbi.nlm.nih.gov/pubmed/23686862

Diets most rich in Nrf2 are the Mediterranean, Okinawan, and Paleo.
Also, Ketogenic diet http://www.ncbi.nlm.nih.gov/pubmed/22078747

Foods that help boost Nrf2 levels include:
1) sources of phenolic antioxidants: cinnamon, olives, berries, carrots, grapes
2) sources of vitamin E: nuts, seeds, vegetable oils, green leafy veggies
3) sources of Omega 3 fatty acids DHA and EPA: fish oil, fatty fish like salmon, tuna, mackerel, trout, flaxseed, seaweed, fermented foods like yogurt and kim chi
4) sources of carotenoids: carrots, sweet potatoes, dark leafy green veggies, tomatoes
5) cruciferous veggies: broccoli, brussel sprouts, cabbage, cauliflower, and greens (Kale, collards, etc.)
6) allium veggies: garlic, onions, leeks, etc.

Exercise & calorie restriction also help boost Nrf2 levels

http://www.ncbi.nlm.nih.gov/pubmed/25672622

 

[masterjen]

Foods that help boost Nrf2 levels include:
1) sources of phenolic antioxidants: cinnamon, olives, berries, carrots, grapes
2) sources of vitamin E: nuts, seeds, vegetable oils, green leafy veggies
3) sources of Omega 3 fatty acids DHA and EPA: fish oil, fatty fish like salmon, tuna, mackerel, trout, flaxseed, seaweed, fermented foods like yogurt and kim chi
4) sources of carotenoids: carrots, sweet potatoes, dark leafy green veggies, tomatoes
5) cruciferous veggies: broccoli, brussel sprouts, cabbage, cauliflower, and greens (Kale, collards, etc.)
6) allium veggies: garlic, onions, leeks, etc.

Exercise & calorie restriction also help boost Nrf2 levels

http://www.ncbi.nlm.nih.gov/pubmed/25672622

Basically all this amounts to is healthy eating and getting sufficient exercise. Easy enough, and I've been eating this way for years anyway