Neurofeedback - Rebecca's Story

[RobinN]

Thank you, both.
This has been quite a journey, as you both know. One that we needed to experience I guess, to learn the greater lesson.

 

[pmcdonald8]

Robin, I am signing on for the first time in almost a year.... no seizures for a year and four months and now here we go again.

Sam, 18, is a senior too. Last year went so great....no seizures. And then late May started having "racing heart" episodes.... Docs say unrelated - although I had always seen these a month or two prior to seizure onset. And sure enough, July - 3 Grand Mals in one day. Increased Keppra to 1500 mg AM and 2000 mg in PM... Another seizure two weeks later - upped Keppra to 2000mg 2X per day...so far no seizures, But still having "heart racing" episodes - every couple weeks...usually lasting 1-2 mins. LAST night he had one that lasted 10 to 15 mins!

We can't go up on the Keppra - maxed, thinking of nutrition and neurofeedback.... After completing what is your opinion of the neurofeedback? Worth it or not? Nutrition - where to start?

Oh, one of the big differences in Sam's current seizures is that they occured in the day...his have always been at night (primarily 11:30 PM)...SO this gives me great concern about High School....

Thanks for any insight.

Pam

 

[Meetz1064]

Personally, I'm

thinking about doing the neurofeedback for myself for several reasons, so it really might be worth it, pmcdonald. I have several issues that it might work on, (ADHD, E, migraines) but in my case, it will take some time. There is a provider nearby, but with all of my other issues going on, I need to deal with those first....that, and we're getting ready to change insurance, and I don't know if the new insurance will cover it or not.

 

[RobinN]

Hi Pam
Sorry to hear about Sam's setback.
It is my belief, and remember I have no medical training, however, I do believe that these two need to go hand in hand. I don't think Rebecca would have seen the positive results she did with Neurofeedback, if she had not also made nutritional changes.

The nutritional changes have created an environment that has allowed the Neurofeedback to stabilize her brain function. In addition we are also currently doing a low-dose chelation therapy to remove heavy metals from the brain and body. This will also encourage the stabilization over time of the brain, and allow for further healing of her organs.

It is my opinion that you need to get the nutrition started, supplements in place, and then at least twice a week NFB therapy. I highly recommend it.
Rebecca's threshold continues to rise, and she remains med free.

Consider blood sugar as a cause too, for the "racing heart". I know when mine drops I get really shaky and feel a rush of ? throughout my body.`

 

[pmcdonald8]

ROBIN, thanks for the reply.... We did try the chelation several years ago, for us at the time we didn't see much change in brain function...Sam wasn't having seizures at the time and hadn't for 6 or 8 years. His started 1 year after we finished the chelation (although I think unrelated).

But like everything else, it is probably finding the right "combination"....nutrition, neurofeedback, chelation, meds etc.

Question, are you doing the chelation while taking the supplements? Our doc at the time suggested that we do the chelation before the supplements...as the chelation would remove some of the supplements as well from his system and we could get an imbalance....don't know how true this is, just his take on it.

Do you know of any good neurofeedback clinic in San Antonio, Texas? And maybe Nutritionist/homeopath doc?

Good luck to you and your daughter and thanks again for sharing your experiences with us.

Pam

 

[RobinN]

There are a few supplements that are recommended by Andy Cutler to support the body while doing the chelation. It is not a one time protocol which most doctors recommend. Andy is a chemist and says that it MUST be done on a low frequent dose so that there is no redistribution into other organs. Since the mercury is mobilized you want to to slowly move it on out of the body. So we are doing ALA every three hours, from Friday to Monday.

There is a good center in TX, but it might be focused on pediatric health. Let me go search for it. I was really interested in what they have to say while researching. I am sure if Sam is too old, they would know of someone to recommend. Also there is a banner at the top of the page that is a link to a search function. EEG Spectrum I believe. You can get a 10% discount if you say you were referred by CWE. It is a great savings.

http://www.thoughtfulhouse.org/nutrition.php
http://www.thoughtfulhouse.org/faq-nutrition.php
http://directory.eeginfo.com/

Thank you for the good wishes. I can't express how happy I am that her threshold is raised. I have to presume that her body is managing this all on its own, since she is not on any meds. Little sugar, no additives, limiting refined carbs, and increasing the balance between proteins and carbs throughout the day. Balancing the blood sugar has played a huge part of her healing.

 

[Ruth]

Hi Robin,

What is chealtion? How do I go about it?

pmcdonald8, I am on Keppra. My neurologist told be me to take Vitamin B with it. I take the Vitamin B complex.

 

[RobinN]

Well, Rebecca's longest run being seizure free was ended last night. She had a seizure after having a SODA. Grrrr!
She was skating with some friends and I guess she decided to take the risk. Bad choice.

Back counting again, but certainly not in the least discouraged. It has been since May that she has been seizure free.

Ruth - chelation is a way to get the toxins and heavy metals out of the body. There are different protocols, however from my research the one suggested by Andrew Cutler is the safest. One has to be careful when moving toxic metals through the body, that they do not get redistributed to other organs.

 

[RobinN]

Update:
Spent the morning in the ER. Rebecca had a 7 min. tonic clonic seizure. They said her blood glucose was 150 following the seizure. However, what was it prior to the seizure. We will never know. Her numbers go up as a stress response.

ER Doctor says I seem to know more than he does, so keep on doing what I am doing.

I need to get stricter about when she goes off her "plan" and also be better about her daily supplements. With changes in schedule I forget to give them to her.

I really don't want to have to count and measure food consumption.

 

[Cint]

Update:
Spent the morning in the ER. Rebecca had a 7 min. tonic clonic seizure. They said her blood glucose was 150 following the seizure. However, what was it prior to the seizure. We will never know. Her numbers go up as a stress response.

ER Doctor says I seem to know more than he does, so keep on doing what I am doing.

I need to get stricter about when she goes off her "plan" and also be better about her daily supplements. With changes in schedule I forget to give them to her.

I really don't want to have to count and measure food consumption.

If you're sure it is Hypoglycemia, then you may have to count and measure her food consumption. Since her glucose was 150 after the seizure, how do you know the numbers go up as a stress response if you didn't know what the number was before the seizure. If you're sure it is hypoglycemia, are you keeping track of her glucose levels?
A 7-minute tonic/ clonic can be very dangerous.

 

[Ruth]

Hi Robin,

I am a diabetic. I will try to help you out. First, have her tested for diabetes. It is not Hypoglycemia. If it was, her blood count would be below 90.

Since her blood glucose was 150 after the seizure, it went down from before the seizure. Seizures burn blood glucose, therefore her blood glucose was higher before the seizure. Exercise lowers blood glucose. Epilepsy and diabetes do not get along in the brain. You have to control the diabetes to keep from getting seizures. Age does not matter as to when a person gets diabetes. I had absolutely no symptoms of diabetes. Then I started having severe seizures. They tested me for it and I have it. Her blood glucose should only be between 90-140. That is where I try to keep mine.

She can only have 50 grams of carbohydrates a meal. Try for as little fat as possible. I have nonfat milk and then nonfat yogurt. Meat causes triglcerides and cholesterol will skyrocket and cause more problems. She should only have 3 ozs of meat at dinner. Then a short walk or some type of exercise that she prefers. Keep an eye on her feet. The gravity of the circulation of blood goes down to the feet and has a hard time going back up. That is why exercise is important. It gets the blood back up. Diabetes affects the circulation of the blood.

Have her tested and take her to a nutritionist. With Love, Ruth

 

[Shelley]

soda

The blood sugar could have been artificially high after the soda, and whammo.
Do you monitor blood sugar levels? Does she get tons of rest, not just eight hours?
I know that you have been working on optimal nutrition, so I won't go there.
Adolescence is tough, cuz kids know to do one thing, yet try another in an effort to 'spread their wing' and assert independence. There is also peer pressure, and the need to fit in. Nobody wants to be different. Does she have good friends? Do they understand that all sweets are a no-no? Water is boring, yet far superior to any soda out there.
Just get her back on the diet, and encourage her to stay there.

 

[Bernard]

{{{Robin/Rebecca}}}

It took a long cycle of:

• periods of no seizures
• feeling invincible
• falling off the protocol wagon
• waking up in the ER

before Stacy finally realized that she had to stick with the program for good - that feeling invincible when she's been in a long period without seizures does not mean she is cured or home free.

Give Rebecca my regards. Tell her not to follow in Stacy's circular footsteps for too long.

 

[Ruth]

Hi Robin,

When my blood glucose falls below 90, I have something sweet. I use a reli-on Glucose Tablet. They are inexpensive and you can buy them at WalMart. Rebecca can slowly suck on it. It tastes like a candy. They temporarily raise my blood sugar until my next meal. Being below 90 can cause seizures, as well. A lot of sleep is not good. Being active and doing things is good for everyone.

You are great at nutrition, you will get a diet that will fit into Rebecca's plan. Carbohydrates slowly turn into sugar, so they are not drastic. When you check her blood glucose levels, do it 2 hours after a meal. It takes that long to show an accurate reading. You do not have to check more than 2-3 times a day.

Another thing, doctors love medicines, as you know. When I was diagnosed with diabetes, wham bang, I was put on a medicine. 2 months ago, after finding out that medicine's for diabetes do not work for me, I am on nutrition and exercise.

Now, I am losing weight. It was the medicines that were putting on the weight. I am just about down to 125, my normal weight. I was at 180 with the meds. I took 4 hour walks 3 times a day a few years back. That started my weight loss. Then I got pneumonia, I am finally getting back into an exercise routine.

I have learned a lot from you about nutrition. Sorry, the tropical storm I was telling you about has gone east into Mexico.
Ruth

 

[Cint]

Ruth,

I have Type 1 diabetes as well and my glucose has fallen well below 90 many times, but I have never gone into a seizure from it. My endocrinologist says my range should be 80-120. My endo says hypoglycemia is when the glucose is below 70. And I've been in the 60's many times and don't feel a thing. I follow a good glycemic diet and watch my carb intake carefully. I also make sure I exercise.

 

[Ruth]

Hi Cindy,

I have Type 2 diabetes. When I take my fasting test every 3 months, my BG goes way below 90. Right after my 12 hour testing is when I take a glucose tablet. When I get home, I eat my breakfast. I have not gone into seizures from my fasting. I actually go into seizures when my BG is too high. That is when I do extra exercise. That way I prevent seizures. I still have seizures from my epilepsy.

I like the glycemic diet as well. All Rebecca has to do is live her normal childhood. That will be her exercise. She does not have to have a special exercise routine. I did not mean that she has to do special exercises. As long as her carbs are under control, she will be all right.

I do not have an endocrinologist close to where I live. I would have to make a drive of 2 hours to see one. I know how important it is to have an endocrinologist.
Ruth

 

[epileric]

Years ago I knew the girl behind the counter at a sub shop. I had a pretty huge seizure by my standards- only myoclonic, not all out T/C.

The girl behind the counter explained that she was a nursing student & that something that happens after a seizure is that your blood sugar drops. She gave me a pop & told me it would help me feel better faster which it did.

I would have assumed that rebeccas low blood sugar level was from the seizure. Robin, have you ever asked any medical professional at the hospital if seizures have any effect on someones blood sugar?

 

[Shelley]

Winston Churchill

Never, never, never, ever give up!
I agree with Bernard.
Keep going!

 

[Ruth]

Update:
Spent the morning in the ER. Rebecca had a 7 min. tonic clonic seizure. They said her blood glucose was 150 following the seizure. However, what was it prior to the seizure. We will never know. Her numbers go up as a stress response.

ER Doctor says I seem to know more than he does, so keep on doing what I am doing.

I need to get stricter about when she goes off her "plan" and also be better about her daily supplements. With changes in schedule I forget to give them to her.

I really don't want to have to count and measure food consumption.

Robin, how long did Rebecca go without a seizure? I agree with the ER doctor, you know more than him. Everyone is different about their numbers. If it went up, then it was not to high. It was within the correct range. You are great with nutrition.

 

[RobinN]

In the past, though not specifically monitored each time, her glucose has risen.
I have been told by her neurologist that this is a stress response. So my thinking was if her blood sugar was low prior to the seizure, it would rise (per the neurologist) as the paramedics were taking the test.

She did mention to a friend that morning that she did not feel particularly well. I think I need a monitor left at the school to have her go in on such days and check. So much new information is being written about diabetes, and blood sugar levels. What once was thought to be so, isn't so any more. Need to dig deeper.

Actually, I am more inclined to figure out why there is an imbalance in the first place. to find out why her hair test came back so negative in the essential nutrients. Why our new holistic dentist, says her nervous system seems to be ALL out of wack. If it is not a seizure it would be something else. So good to know that all is not right.

Nutrition has helped though.
Thanks everyone, sometimes I feel like I am speaking into an empty room.