Neurofeedback - Rebecca's Story

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

I just found this information in my mail from a doctor's newsletter that I read often. It si becoming clearer to me that Rebecca's diet has played a huge role in the imbalances that have occurred in her body. Now I don't want to mislead you and tell you that she was a junk food addict. No, rather it was the white flour pastas, the bagels, the crackers, 10% juices, sodas, etc that helped create this.

When Rebecca had her first seizure she had excessive estrogen. Did a doctor tell me this? No, I found this out by researching why she had spider veins on the inside of her thighs at the age of 14. I read that this was largely due to excess estrogen. Of course that first neurologist when asked specifically if hormones could play a role in her seizures told me, "No". How many months did I waste not following this path? Far too many. Had she been put on a low glycemic index diet or something similar we might have forgone two years of hell looking for a magic pill.

Read on:
How do you create and maintain estrogen balance?

The first step is to overcome insulin resistance.

Insulin is the hormone released from your pancreas after a meal. It sends signals to your cells telling them to absorb sugar from your blood-which is a critically important job.

However, this finely orchestrated system is sent spiraling out of control by our modern diet. Sugar is the main culprit. When you eat too much of it, in the form of high-fructose corn syrup, highly-refined and processed carbohydrates, or the multitude of other forms it comes in, your body sends out more insulin than it can properly use and you develop insulin resistance.

What most people DON'T realize is that as your insulin levels increase your estrogen levels increase as well.
 
You can cure a lot of evil by simply avoiding processed/refined sugars and flours.
 
I have read though that a potato has a higher sugar reaction than table sugar.
Then again what about a fruit salad along with a pasta dinner. Very common in our current SAD.
 
I just found that one of my favorite books on E is on sale for $5.00

[ame="http://www.amazon.com/Epilepsy-New-Approach-Richard/dp/B001JJBOBU/ref=sr_1_?ie=UTF8&s=books&qid=1228667484&sr=8-1"]Amazon.com: Epilepsy: A New Approach: Adrienne Richard, Joel Reiter: Books@@AMEPARAM@@http://ecx.images-amazon.com/images/I/51KPWHRCFTL.@@AMEPARAM@@51KPWHRCFTL[/ame]
 
We are into another cycle - Keeping my fingers crossed.

She has been feeling pretty well, other than slamming her thumb in the car door.
Told her it was a very trending polish color, we could paint the others to match.

I have to say we have not been able to do NFB for 2 wks now. She leads a very active teenage life these days. School is challenging her, but she seems far more connected to it, and taking charge of her responsiblities.

I have limited her supplements while I continue to give her the LiverLife.
She takes Magnesium (1000 mg), Ultra Omega (2000 mg), Vit D (1000 IU) per day.
Her pH #s still remain high. Very acidic. This is still a puzzle.

I do hope she makes it though this week, because then she is home on winter break.
 
Made it through the sensitive time of the month :woot:
:ponder: now how to keep the sugar intake balanced...
 
Congrats Robin ** I know what a huge accomplishment that is .
joan*
 
Great! That sounds like wonderful progress.

You are to be commended for watching your daughter's diet. My mom didn't always do that one. In fact, she makes mass quantities of food and some of them are heavy in refined sugar and Sucralose. The family history of diabetes, high blood pressure and heart disease hasn't stopped her.
 
Neurofeedback has been put on hold, due to holiday festivities, and time restraints, and Rebecca not feeling very well. Certainly not due to lack of interest.

However, I have been seeing some interesting symptoms lately due to an antibiotic that Rebecca needed to take after some dental surgery. She was prescribed Penicillin, and her body reacted to it. She was almost done with it when she told me about the diarrhea. Then she had acute soreness to her tongue. She couldn't eat for three days. She became fatigued quickly, and dizzy when rising. After the last pill she also started complaining about a major headache from time to time. Fatigue often continued. This is from an athlete that works out daily. Very evident something was brewing.

I knew I was going to add probiotics, so I discontinued any and all other supplements. Did not want to add to the issues in her gut. Can you imagine what that must look like?
Antibiotics kill all bacteria even the good stuff needed to help digest food. So her body was thrown something major here.

I got to thinking about her use of antibiotics over her life and the chaos that must have occurred within the intestinal tract, because at that time I did not know about probiotics. There has been a history of antibiotics, constipation, eczema. Then seizure, more meds.

Wondering if we can begin with a clean slate and give her all the nutrients back into her system. I am purchasing a juicer this week, to make veggie juices. She is open to this, as a way to get the enzymes back into her body. Probiotics to provide good bacteria, and also biotin for now to help keep yeast under control.

I am open to ideas, because there is no doctor that I have on board at this time that would be interested in considering this approach. They certainly would not tell me NO, as good nutrition is always important. They just would not have a plan to work with.

I have been toying with the idea of a Traditional Chinese Doctor. I have been told they can look at the tongue and tell what the problems with the different organs.

I think I will try the Neurofeedback and see if it helps with the headaches. Though I do believe they are brought on by intestinal distress.

Did you know that if you have a history of eczema, you should not be prescribed Penicillin? Wonder why the doctor did not ask that.
 
Robin, I admire you and give you alot of credit. You really do a great job.

Have you thought maybe shes become allergic to the penicillin? My Mom took an antibotic a few weeks ago for her mouth and her reaction didnt start till she almost finished the meds. I told her to stop the meds and call the Dr but no, she finished the script. When she went back to the dentist he told her she was crazy and that she had had a major reaction and should never take them again. oiy *

Also, IM not sure, but you may be interested or you may be way past this. Im looking into www.breakingtheviciouscycle.info

Many use it for autism BUT with my genetic kids, E, OCD, SI, could fall under the autism spectrum sooo... Im looking into it. Im curious what you think. I think youd find it interesting.

Be well and hang in there*
joan*
 
Sorry to hear about Rebeccas latest troubles

Have you looked into seeing a naturopath or nutritionist?

Also if I can give a bit of advice when buying juicers..... I bought myself one that I was able to afford (cheap) & it was basically a blender. The amount of veggies needed to produce the smallest amount of juice was huge & the ground up veggies still had lots of liquid in them so don't be reluctant to spend the extra $$$. You'll save it in getting more juice from what you put through the machine.

Eric
 
Robin, I admire you and give you alot of credit. You really do a great job.
Thank you. Sometimes I feel quite alone in this challenge, especially when my teen feels like her mom is "full of it".

Have you thought maybe shes become allergic to the penicillin? My Mom took an antibotic a few weeks ago for her mouth and her reaction didnt start till she almost finished the meds. I told her to stop the meds and call the Dr but no, she finished the script. When she went back to the dentist he told her she was crazy and that she had had a major reaction and should never take them again. oiy *

I think that is exactly what has happened. I didn't really understand until I did a Google search last night. That is where I found the side effects, and this:
Also, people with hay fever, asthma, eczema, or other general allergies (or who have had such allergies in the past) may be more likely to have severe reactions to Penicillin.
Nice to learn about this after the fact.

So I asked myself, at this point what good will it do to contact the dentist. He won't have much knowledge about probiotics etc. I have since found out that probiotics can also move mercury around. She has tested high in three metals, and mercury is one of them.

Also, I'M not sure, but you may be interested or you may be way past this. I'm looking into www.breakingtheviciouscycle.info
Many use it for autism BUT with my genetic kids, E, OCD, SI, could fall under the autism spectrum sooo... I'm looking into it. I'm curious what you think. I think you'd find it interesting.

I am familiar with the SCD diet. I learned about it after I had spoken to Dogtor John about the GARD. We eliminated lots of gluten and casein from Rebecca's diet but not the carbs. She had such trouble with dealing with the seizures and dietary changes, that I held back on it. I think it is a very solid diet. One that most people in the U.S. would benefit from. We have been talking about finding more daily veggies and protein than fruit and carbs. I really wish she would jump in all the way. Yet even I have difficulty eliminating certain products. We both have come a long way here the past two years.

I just need to make further changes quickly to heal her recent issues.

Be well and hang in there*
Thank you. I appreciate the suggestions you have made, and maybe that or the Modified Atkins would be one to follow.
 
I contacted a nutritionist that was recommended by 3 separate people, and she refused to see Rebecca due to the seizures. Nice huh?

I have read about Naturopaths, but I have to this point been hopeful that I could find doctors that could be covered by our insurance. The Neurofeedback was our splurge... along with all the supplements that are out of pocket. I am told that if your doctor will prescribe a certain diet, you can write off a portion of your food bill if you have to shop at specialty markets. I am still not convinced that the time taken would benefit the return.

As far as juicers... I also did some research a while back and found they do range in price. I think I am going to go with the Jack LaLanne one from CostCo. His name on the product has been around for a long time. I am not sure she will even be convinced that this is useful to her. It may end up on my shelf next to my Cuisineart.
(Please don't tell me this is the kind you bought....)
 
lol.. gotta love teens as you cant kill them : )

I try and discuss most of this with the kids so they can have some input and have questions anwsered. The other day the 3 of us are chatting about OTs and such and my son looks at my daughter and says "Next, she'll be bringing us to a witchdoctor!! I told him IF I thought that witch Dr could heal him? Wed be the first on line. He also knows Im not kidding*

Maybe Ill hide his car keys for a week? lol jk *

joan*
 
When I started quoting DogtorJ... For a while she would go around telling people that "My mom is talking to a vet, she thinks I am a dog now."

I think this current bout with intestinal issues, Rebecca now sees a connection between the gut and the brain. Perhaps it was needed for her to tie those ends together.
If you find a witchdoctor that works, make an appt for me as well.
 
I think I am going to go with the Jack LaLanne one from CostCo. His name on the product has been around for a long time.
(Please don't tell me this is the kind you bought....)

Don't worry, the one I bought was much cheaper (in price & quality).
 
Im not sure this the place but... I wanted to say*

I am really impressed that Rebecca kept to her sports. I think that must help her mentally and physically as well.

My son was a varsity swimmer and a brown belt in karate. He had just started some other martial art as well. He gave it all up and 3 years later I cant do anything to get him back into any activity. Charity work? sure he'll do that but swim? run? ride a bike? It seems hes getting back at E by being inactive. I would think hed gain weight but actually hes lost. I blew the dust off his roller blades and threw him out yesterday. Told him do not come home till you are tired. He slept better last night and I think felt better today. I threw him out again today. I wish he would find something hes willing to do but if it includes telling folks he has E? He not doing it. Hes really come a long way in just a few months but he has a way to still go.

Since he wouldnt rejoin a sport I made him start to volunteer. Im shocked, but he choose to volunteer for the wounded soldiers coming back. He said if he cant be a marine, he will help them where he can. It made a huge positive improvement in his mental state.

I feel like Im in OZ.... at times

joan*
 
... I am purchasing a juicer this week, to make veggie juices.

Fresh squeezed veggie juice is awesome, but it gets to be a grind to prepare it every day. I find the added expense of buying a quality juice (like Odwalla) worth it.

... I have been toying with the idea of a Traditional Chinese Doctor. ...

Stacy tried that with Dr. Yang (Qui Gong acupressure). Hard to say what, if any, real effect it had other than the hole it left in my wallet.
 
I will consider your juicy suggestions, Bernard.

I was told that many TCM practicioners can look at a tongue and tell a lot about a patient, and the health of their internal organs.

Muscle testing has also been suggested to me. I think this is kinesiology. However, I do think that this is a questionable practice.
 
Last edited:
Back
Top Bottom