Biofeedback, Nutrition

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Karen, no head phones used, more like mini EEG with 4/5 electrodes placed on head to monitor and control brain waves (feedback)
 
They are placed on the scalp with a waxy type substance. You don't feel anything.
 
Perhaps we'll look into whether the biofeedback is available in our area.

At any rate, on day 2 of vitamins/supplements back up to normal dose (which includes magnesium, along with taurine and other stuff) and 5 mg of flaxseed meal per day -- first day NO SEIZURES (after averaging 2 or 3 per night for the last 9 nights), and 2nd night, one mild tonic -- very brief. So...with the supplements, he's getting 80 mg of magnesium, and with the flaxseed meal, he gets another 20 mg -- so that might be helping.

Of course, the night he had no seizures was also the night he had his sleep EEG, but that was actually ok, because his neuro was mainly wanting to rule out Lennox Gestault (which he did).

But anyway, his doc has decided to hold off on raising his med levels for 2 weeks, and is willing to see what the supplements and tweaking diet will do. The nutrition doctor wants to try a tiny bit of MCT oil.
 
thats great news Karen "willing to see what the supplements and tweaking diet will do", please God it will.

Seizure diaries are so useful /if not in my oponion critical - as you have just shown :)
 
Yes, praise God we have a neurologist who's willing to think outside the box and not just throw pills at us. And we're seeing a new nutritionist now -- he's actually a pediatrician with specialty in nutrition, and he's right across the hall from the neurologist, so we were able to bounce a lot of ideas around.

After 3 days back on full vitamin/supplement regime (high in B6 and other vitamins, plus magnesium, carnitene, taurine, selenium, etc.), he had one night seizure free, and 2 nights with just one mild seizure. So...a definite improvement.

We start today on 2 mg of MCT oil per meal. This is commonly used with ketogenic diet, but I also read it can be helpful for seizure disorder even when not on diet. So...we'll see how it all works out.
 
I'm starting to work through the ingredients in Jon's Nutrivene D capsules, one by one, to see what effect they might have on seizures. We already mentioned magnesium. But there's lots of other stuff in them (the main idea is to reduce oxidative stress, which is a big issue with kids with Down Syndrome) like selenium, carintene, taurine, etc. -- all of which seem to play an important role in the brain and protecting against seizures. When I plug them into a search on this website, I keep pulling up Robin's old research (which I will take the time to read through carefully).

So anyway...the Nutrivene D seems to have a significant impact on Jon's seizures -- when we reduced his dose, his seizures got much worse, and when we went back to full dose, his seizures have improved. But, since there's so many ingredients, it's hard to tell which one is working (or perhaps they're all working together).

So...this question is for Robin, because it looks like you've tried a lot of different supplements for your daughter...but are giving them all separately? Do you keep a seizure log that references the supplements (i.e. effects when they are added in?), and, if so, which seemed to have the best effect?
 
I have tried a lot of different supplements. Yes I did keep a careful journal for a while. Then I had to make a choice as to which were the most important, as I had a spouse that poo-pooed supplementation. I kept the very most important ones. Some took time to see the results and since her seizures were not daily, I had to go on intuition and how she told me she felt. I also used them on myself before I gave them to her.

Have you tried nightly baths with epsom salts? Or perhaps mag transdermal rubs?

Here is what I give Rebecca now:
Ultra Omega
5,000 - 10,000 IU of Vit D.
Magnesium
Biotin
 
RobinN said:
Have you tried nightly baths with epsom salts? Or perhaps mag transdermal rubs?

Here is what I give Rebecca now:
Ultra Omega
5,000 - 10,000 IU of Vit D.
Magnesium
Biotin
Click to expand...

Is the epsom salt bath for absorbing magnesium or something? We actually don't have a bathtub in our house -- Asians think bath tubs aren't clean. But maybe I could go out and buy one of those tubs they use for laundry around here, and use that, since Jon's still pretty little.

Chaz mentioned that the magnesium was helping her son sleep, and thinking about adding in a small nightly dose of magnesium, because Jon is just popping up every 30 minutes through the night. The addition of Diazapam didn't help -- it makes most people drowsy, but Jon is having a paradoxical effect and is super hyper.

Is the Ultra Omega the Omega 3 oils, or a combo of 3 and 6? Jon is getting some omega 3 in his flaxseed meal, but thinking about adding a little more in -- a lot of the keto parents do that. I also discovered that because we use ground flaxseed, the magnesium amount in that isn't as high.

Jon gets 1060 IU of Vitamin D3 in his Nutrivene and 106 mg of Biotin.
http://www.nutrivene.com/dynamic_pages/DSCapsbyweight2011revisions (1)(1).pdf
 
Nakamova, I did read through the Biofeedback thread that Bernard has. I'm not sure if Jon would be able to understand the instructions for what he's supposed to do in a session.

I could empathize with Bernard's frustration in lack of research on this therapy, mainly due to lack of funding.

Reminded me of a conversation with Jon's epileptologist a while back. We were discussing Piracetam, which is used as an adjunct med for seizures in most of Europe and Asia, and also used for things like stroke (enhances communication between right & left brain), dyslexia, cerebral palsy and even Down Syndrome (to enhance speech). However, it isn't approved by FDA in the US, and our epileptologist said it's because its so ridiculously cheap that the drug companies (who apparently fund most studies) won't fund it because they won't make a profit off the drug.

So that just makes me wonder how many non-medical therapies -- like biofeedback, or vitamin supplementation, or the ketogenic diet -- are being pushed into the back corners of epilepsy treatment because of all the hype over the newest (and super-expensive) drugs hitting the market.

In other words, are we letting big business (i.e. the drug companies) determine our destinies with regard to seizure freedom and quality of life?
 
Karen, he could be trained under guidance of a child psychologist, my Son is :) and what a lovely gentleman he is, why is my Son with a child psychologist when he is 26, because the min we met him we knew he was the right person to administer/guide my Son in the therapy. My Son loves him to bits!

We just passed 1 month seizure freedom today....and magnesium seems to be working wonders in sleep and overall relaxation, I mean that seriously, very. Hand tremor much less...Please God there will be no breakthrough but if there is, going to go for increase in the magnesium..
 
We just passed 1 month seizure freedom today
Click to expand...
That's so wonderful!

KarenB --
The US army is one place where neurofeedback is being tested right now -- specifically for use in PTSD. I'm hoping that whatever they learn in their study will spill over into the private sector and allow for greater acceptance. Meanwhile, because of it's use (and success) in treating ADD/ADHD, it's starting to get covered by Health Insurance.

And I agree with your frustration with the lack of study of nutritional approaches. There needs to be funding to have these potentially successful (and inexpensive) treatments vetted through widespread testing, and then made part of standard protocol.

Even a group like CURE which funds epilepsy research doesn't seem to pay attention to "alternative" approaches.
 
Chaz -- that's SOOO wonderful that your son is now 1 month seizure free. What a victory!!

I went out to our pharmacist yesterday and bought magnesium and also Omega 3 fish oil. He gets Omega 3 in the flaxseed meal, but it's ALA, not the DHA and EPA that's in the fish oil. Have been reading some pretty strong support for fish oil in epilepsy treatment, so he started today on 1000 mg.

Found this website helpful in giving copious information on Omega 3
http://www.dhaomega3.org/Frequently-Asked-Questions

For the magnesium, we had a hard time finding what we needed, because he already gets 80 mg a day in his supplements, and 110 is the upper tolerance level for magnesium supplements for his age and size. So, we wanted to just add 30 mg, but couldn't find smaller amounts. Also wanted to use Magnesium Cytrate, but couldn't find. We did find a liquid, but it was sweetened, so he can't take that (Keto diet). Pharmacist finally came up with Chelated Magnesium in 100 mg pills. I suppose we can cut those into thirds. It might be safe to just go ahead and give him a half pill -- will discuss that will his nutrition pediatrician next week when we go.

Nakamova, I found a website from American military on brain injury and recommended nutrional plans and supplements (magnesium being one of them). I think a lot would cross over to seizures.
http://www.nap.edu/openbook.php?record_id=13121&page=23
 
He got his first dose of magnesium this evening, and was so calm. He was ready for bed at bedtime (rather than bouncing around the bedroom til midnight), and went right to his bed and head down on the pillow and asleep in minutes. Hopefully he has a good night (we both desparately need the sleep).

We had a bit of a snafu with his meds when they got refilled at hospital -- he got too much one day, then not enough the next day, because instead of 2 little 2 mg Diazapam pills, there's now just one 5 mg pill, and in my sleep deprived state, I didn't notice until my husband realized it. So...anyway, think we have that where it should be now, but the ups and downs caused him to have 6 tonics this morning.
 
So sorry to hear of the med stress and breakthroughs 

Magnesium works fast - we seen that to.

May you all have a peaceful deserved good night’s sleep, many of them please God.
 
Thanks Chaz!
NO SEIZURES last night!! 32 hours seizure free and counting...

Behavior so much better today! Calm but happy. I didn't get scratched and pinched as usual. He had a fun day. We went to the mall, and he played in the ball pit with other kids, and was making good eye contact, smiling, just enjoying himself like any kid. And being gentle with the little toddlers. This is the Jonathan we had several years ago, before seizures and seizure meds took their toll, and turned him into an agitated, austistic, aggressive state.

He was a little hyper tonight before supper, maybe the excitement today. Anyway, he got his magnesium again with supper, and within an hour was calming down. In bed and asleep by 8:30.

Not sure if it's the magnesium or omega 3 oil (or both) that's making the change, but things are definitely looking up.
 
That’s mega great news Karen!!!! What a joy it is to read your wonderful news.

Josh takes Omega 3 also, hated the meds from day 1 and we quickly introduced Vit E and Omega 3, he said it dramatically reduced depression and brain fog... I feel it’s another overall protector.

We still seeing real benefits of magnesium, my Son (me too), sleeping quietly and soundly. Is relaxed and says his reflexes are better…..
 
Ha! My husband is thinking about trying the magnesium too -- he gets all wound up about the small things, and sometimes also has trouble sleeping. He has that restless leg thing, and I think magnesium is supposed to help that as well.
 
I hope the good results with magnesium keep coming. So terrific to hear.

Nakamova, I found a website from American military on brain injury and recommended nutrional plans and supplements (magnesium being one of them). I think a lot would cross over to seizures.
http://www.nap.edu/openbook.php?record_id=13121&page=23
Click to expand...

Thanks for this -- the military seems to get a lot of studies going that could be beneficial to the E community. There are ongoing studies (some done by the army) that have found a benefit to progesterone being administered (to both med and women) in the early days after a TBI. Which is interesting given the role it plays in seizure control -- not only in balancing out estrogen (which can trigger seizures), but in protecting the neurons in other ways as well. http://www.sciencedaily.com/releases/2010/02/100219204407.htm
 
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