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!

Rebecca is doing so well over all. With all of the activity of one trip morphing into another trip... vitamins were forgotten, NFB was unavailable, and hormone cream was not used on a regular basis.

Rebecca had a seizure on Wednesday Aug 5th in Mammoth Mtns. She then had a terrible migraine and stomach disorder. Connections were made to altitude sickness. So who really knows what kicked in. I was in Mexico at the time, so I got this second hand. All I know is the family she was with handled it beautifully. I couldn't have asked for better caregivers.

I can only say, how pleased I am at this point with her overall progress. We are back on track with NFB and hope to get in many sessions this week prior to school starting next week.

Her nails are really healthy, I am sure due to all of the vitamins that she takes. A sure sign of overall health. She is relaxing more with the dietary expectations, and strikes a good balance with her social life. Hope it all does not fall apart as she enters her junior year. It is going to be interesting as she wants to work too.
 
I wanted to add to the record that I have Rebecca now taking Carnitine.
 
Around 11:00 pm Rebecca called out to me, and I went in to see what the trouble was. Both of her legs were in spasm. She had not been to sleep yet, but rather had been reading her book.I tried a massage to help relax her, but that didn't help at all.

We had done an evening NFB session, as the day was full of errands.

She really didn't do more exercise than normal yesterday either.

I came to the computer to do a quick search, and one site said that spasms like this could be an electrolyte imbalance, so I made her a glass of the Emergen C that has many minerals that Gatorade and such have. She drank half of it, and I gave her a half dropperful of my ionic magnesium as I have read that helps with leg cramps. She hasn't been up to her regular 1000 mg of magnesium for sometime, so I didn't feel nervous about the increase.

The spasms seemed to be less severe, so I asked if she would be able to fall asleep and she said she would try. I didn't hear back from her so I guess it subsided.

It was interesting, as it was from her thighs down to her feet.

Today she said her muscles were sore, but she seemed to bounce back just fine and skated beautifully at her morning practice.
 
Last edited:
Interesting. Stacy has said in the past that she sometimes got leg cramps (calf muscles) on nights before having a TC in the morning. It's been a long time since that happened though.
 
Also want to add that this is Rebecca's TOM as well. Could possibly be related...

So being that I understand the Stacy's seizures also typically fell during this time of month, perhaps there is a similar component here.

I have seen no other seizure activity related to this occurance. She once had one thigh muscle go into spasm after a seizure and the neurologist gave us some ativan in case that happened again. I considered giving it to her last night, but decided to try the natural approach first. Seems to have been an okay choice.
 
We had a set back yesterday.
Rebecca was at lunch at school and had a 12 min seizure. The paramedics came, took tests, I felt okay with the situation and signed off on their liability.
She came around after a bit and was a bit sluggish. Not remembering her morning.

I think she is straying from her nutritional plan more than she realizes. Can you believe in science class the first week, they were disecting chocolate chip cookies (not sure of the brand) and then the next day they were to eat it on top of ice cream. She did take in an alternative to have that day. Temptations everywhere.

It is a month ago today that she had her last seizure.
Hormones for sure.

I was going to talk about a new approach that I have been researching lately. It has been shown that the toxins in Rebecca's system are high. I am unsure how to go about this (chelation) safely as I want her to remain med free. It was not suggestion that I chelate her until she was controlled. So it will have to wait. It came to my attention after research that her liver numbers were not within normal range, but no conventional doctor (on my insurance plan) wanted to address this. I have found a product that seems to work at healing the liver, or rather it "promotes and restores healthy liver function"

It is recommended to take the morning urine and saliva pH.
We got the urine this morning and it was high at 7.5. We were not successful at remembering the saliva. That will be tomorrow. They say that:
"Saliva pH is the most relevant in the following measurements. It reflects tissue acidity; our nemesis (robs oxygen, irritates the nervous system, and predisposes us to fungus or rot). Saliva pH is difficult and slower to change than urine pH, which reflects the bodies varying degrees of ability to deal with the acidity. Saliva=what we keep. Urine=what we excrete. Desired range of first morning baseline saliva is 6.8-7.2. Desired range for healthy first morning urine is 5.8-6.2; during detox first morning urine pH should be 5.5-5.8"
Click to expand...

Many foods assist in restoring your child's pH. Fresh squeezed lemon juice is one of the most effective alkaline forming foods. For additional alkaline forming foods you can go to
http://www.essense-of-life.com/info/foodchart.htm
You can also supplement with sodium, potassium, calcium and magnesium., please consult with your doctor for the appropriate dosage. Mineral waters are an easy way to support a healthy pH, also using an alkaline booster like Alkazone.
http://www.toolsforwellness.com/49017.html
Click to expand...

I am going to be trying Liver Life to clear Phase 1 & 2 Liver Detoxification Pathways and teh ability to elimate acids via the urine. Liver Life is suppose to help drain acids from the body, which greatly assists with restoring the alkaline reserve.

When the alkaline reserve is stable and the daily production of metabolic acids can be eliminated, we are also more stable. This makes us less susceptible and sensitive to the changes around us and in us.
Click to expand...

The product is from a company called BioRay.
They have a Yahoo group where there is online support for their product. You don't find that very often. Certainly not with the drugs that are prescribed.
http://health.groups.yahoo.com/group/BioRaynaturaldetox/

(I am not in any way connection financially to this company. I am just a mom trying to regain the health of a beautiful 16 yr old.)

I also want to add that we have not been consistent at all with NFB recently. The days just fly by and after school there is just so much to fill the time. I need to make this more of a priority and a scheduled event.
 
Last edited:
Sorry to hear about the seizure. Please give Rebecca my regards.

School can be frustrating with regards to peer pressure and special diets (among other things!).

Stacy's doc has given her chelation treatments via an IV drip before. It was an all day thing where she read books or whatever in a lounge at his practice. I don't know exactly what was in the IV, but it seems to have been pretty powerful.

Hopefully now that school has resumed, you can get back into a routine with the NFB.
 
Yes Bernard, I have read about that type of chelation. However, from what I read, that is considered a very dangerous way to chelate. Too much, too soon, too fast.

I have been in contact with a chemist, Andrew Cutler, that has an excellent handle on metals in the body, and how they react to the natural chelators. What crosses the Blood Brain Barrier, and what just chlelates from the bodies organs. Andy recommends a method that is frequent low dose that keeps the toxic metals flowing through the system, so that they don't have a chance to redistribute into other organs or migrate back into the brain. His method is 3 days on, every 3 hrs, and 11 days off. It would be a commitment, but one that I am willing to take on if it will create brain health for the long term.

I need her body to be strong to handle this, so she must be controlled seizure wise. It wouldn't be safe to do it otherwise. I don't want her on a med while this is being done. So my next route was to heal her liver. Making sure it is in the best health possible to handle the toxic waste that her body needs to eliminate. I think to see the numbers within range on a blood test would make me feel a lot better that it is functioning properly.

Sorry if that is TMI, as I am thinking outloud many times....
No one to work with me on this is difficult.
 
I just can't

understand why her doctors don't want to work with you. OK, so it's out of mainstream medicine. So what? Her case isn't normal, so a different approach has to be taken. They need to broaden their thinking a bit......
 
They send me to one doctor, who then tells me that they don't understand the connection between their particular specialty and the neurological issues. Even had a GI doctor tell me there was really no connection between the intestines and the brain.
He told me... if someone was not in distress he would see no problem with them not eliminating waste for weeks, if that was common for them. He said... "Does your neurologist believe in your threshold theory?"

Then I try another doctor and he is willing to help, but knows nothing about catamenial seizures and I have trouble understanding his english. Then he can't read the specialty tests that we have, and only requests tests that aren't the cutting edge from what I am reading.

I am stuck with the HMO that we have, and the doctors that we are referred to. During the time that Rebecca had amnesia, I questioned our pediatrician as a mom to a mom. I didn't understand the medical "red tape"... and I received a three page letter cancelling us. I found another doctor willing to tackle the unusual situation, and the first doctor with a phone call stopped that relationship. Different offices but same medical group.

I use doctors now for medication, required testing, and for insurance purposes.
I do believe it is only this disorder that has caused this distaste, because I see right through the fact that they do not intend to take the time to heal her. They only want to "manage" her case.

I know of good doctors, but the $$ is not available to me to try them all out. I spend out of pocket for the NFB, supplements, and organic foods, and therapy.

I work with my instincts and research that which seems appropriate. For me this is better than a doctor that is willing to see her for 15 min. Of course when necessary, I ask for a specific test from time to time, but even then I am not always going to get it, if they don't think it is appropriate.

Knowledge is my support system.

...and of course CWE
 
I am

sooooo sorry, that you've been dealt such a crappy hand. That's just RAW. I wish there were some way that I could help you.......:ponder::ponder:

:rock:
 
That is only half of the doctors we have seen. The others aren't worth noting.
12 patients in a waiting room after lunch and the doctor decides to take an extra hour at lunch...? His name pops up in conversation around town as being one of the most arrogant SOBs... but do I report him to Blue Cross or will Rebecca's insurance be red flagged once again? He didn't know how hormones could trigger seizures, nor was he willing to say that diet could. He has a plaque on his wall that says he is a neurologist.. he wears a white coat and has a prescription pad in his desk.

Perhaps some don't like my approach now. I did it their way for two years, and she was simply a MESS.
 
Today I call the neurologist's office to ask her a question. I realize that she will have to return my call when she is able to. The nurse however, says... "Oh my goodness, there are so many calls ahead of you. Everyone wants to speak to her."

HUH?

Am I not suppose to call when I have a question? I am told after a seizure I should call her, and rarely I do, because in the past doctors don't seem to give a "flip".
Okay, so her life is difficult because she has so many call slips. This is a USC Neurology Medical Doctor, and I am suppose to care that she is busy? My my.... the $$$ are hard earned.
 
Yeah,

isn't it just amazing? :agree: It cracks me up sometimes.....these doctors lead such TORTURED lives......if only they walked a couple of miles in OUR shoes for a change.
 
I have to say our neurologist received a few good points last night.
She called at about 7:00 pm and spent a decent amount of time with me. She is going to order a 3 hr glucose test.

Now... to figure out when is the best time to give this. I am thinking, after Rebecca has skated for two hours and before lunch. Around the time she usually has a seizure.

I have also learned that I can have a Plasma Ammonia test done. Not sure if I am pushing my luck, but it seems to be a good time to have them both tested.

Our doctor is on board with me because she knows how hard I am working to figure this out for Rebecca.
 
I am so glad for you both.

Robin,

I wanted to tell you that my parents went around and around with many nuerologists for me. Because In 1979 no one could explain to them why I was having seizures all the sudden at the age of 4 . When we finally found a doctor that would listen to my parents it was almost too late because I had gone into status epilutus but a doctor in San Antonio finally took on my case and saved my life. And my seizures around on the rebound until I turned 13 then another start up but not as severe and they were able to control them until adult. Now the challenge is just maintaining good brain function! But, If we had the chance to do all over again. My mother said things would have been done differently. What you and your daughter have done is beyond amazing it something I have tried for many years and I would probably have a better quality of life now! My hat goes off to you and your daughter!
GOD BLESS!!!!
David:clap::clap::adore::adore:
 
Last edited:
Thank you David.
That is what I believe too. Quality of life is so important, and I remember the tears I had when I read at the beginning of my research that the QOL was so low for those with seizure disorders.

I am told so often to trust my instincts. However, there are those that try hard to knock me off my feet. I get back up to rally for her. I have such faith that there is an answer for her, and we will find it, if we keep searching.

Thank you so much for your support David.
 
I am so proud of my girl...
She is competing for the first time since her seizures started, at the Southwest Regional Figure Skating Competition today. It is being held in Anaheim, CA.
She continues to persevere even in the midst of her challenging situation.

Think good thoughts around 3:20 PST
 
Robin,
Thinking nothing but good thoughts for Rebecca's success today and in the future as well. She's very strong, and strong-willed, isn't she? Something like her mother, I suspect.
 
Thank you Molly.
She is strong, but lacks confidence at times.

I just found this on www.dogtorj.com

Stuttering - It is my belief that there is a very good chance that this condition is akin to epilepsy in that the same foods that are providing the neurologically active proteins described in the epilepsy paper (Idiopathic Epilepsy- The Dietary Solution) are the culprits in this frustrating and embarrassing condition. I have now read accounts of stuttering people with celiac disease who were able to completely control this communication affliction with a gluten-free diet. However, there are also reports of celiacs with this that did not respond. My comment to them would be the same as my comments to other celiacs that are not reaching optimal health: "Gluten is only ONE of the culprits in the deterioration of our health. You MUST consider dairy (casein) and soy protein as being capable of doing every bit as much harm as gluten."
Click to expand...
Found in the Appetizers section of his site under Stuttering.

I stuttered as a child.
There are stories of colic as a baby. Not being able to digest formula.
I had 30 yrs of migraines, beginning with puberty.

Rebecca had speech issues as a young child. In speech therapy.
Seizure disorder beginning with puberty.
Constipated for 15 yrs.

Interesting connections - thanks Dogtor John
 
You must log in or register to reply here.
Back
Top Bottom