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  #21  
Old 04-09-2008, 06:53 AM
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Originally Posted by RobinN View Post:
She seems to be in a great "place" tonight.
Awesome! I love hearing good news for her (and all CWE members/family).

Originally Posted by RobinN View Post:
Rebecca's question might be one that you are asking yourself.. "Tell me again why we are doing two in one day."
No pain, no gain.

Originally Posted by RobinN View Post:
Her response was that she is curious what "kind" we are doing as "some cause seizures".
Sigh. For photosensitive individuals, the concern is that neurofeedback systems that require watching video monitors could trigger seizures. OchsLabs LENS system also used to have a flashing light system, but they are more sophisticated now from what I understand.

Hopefully your neurologist won't be in denial at the results neurofeedback achieves in Rebecca. The more neuros who wake up about neurofeedback and break the anti-epileptic drug/VNS/surgery only matrix the better IMO.
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  #22  
Old 04-09-2008, 09:26 PM
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Two sessions today. We even had a field trip between the two sessions and drove around the hills covered in wild mustard.
So, so, so pretty.

Our neurologist was extremely supportive of the neurofeedback therapy. I gave her the CD from the EEG Institute, and she was very thankful. I just couldn't come to give her my CWE Bag I had considered giving her. Sure wish I had a CWE brochure to set next to the RNS one. Counted 21 pharmaceutical ads in the medical magazine on the table.
Quite a lot to think about while waiting for the appt.

The doctor gave us a prescription for biofeedback/neurofeedback for our insurance company and for tax purposes. This was quite a surprise. She also mentioned that another USC neurologist is a biofeedback specialist, so we might be getting somewhere with the BIG guys.
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  #23  
Old 04-09-2008, 11:44 PM
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Awesome News Robin ...

Keep us posted!
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  #24  
Old 04-10-2008, 06:44 AM
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for the neurologist!
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  #25  
Old 04-10-2008, 11:24 AM
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Robin, what wonderful news! And even a precription! Keep us posted of your daughter's progress. I am watching with wishful eyes!

Pam
(Sam's Mom)
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Old 04-10-2008, 05:48 PM
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I sure will.
She is doing really well today. She did mention that she woke up in the middle of the night last night and her mind was racing. Took her a while to get back to sleep. This is the sort of thing that they want to know at the clinic.
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Old 04-14-2008, 09:43 PM
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Rebecca was unable to get to her session on Saturday. She did not feel good, and I think it would be frowned upon to be sneezing and blowing your nose during a session. So we had to cancel last minute.

No seizures this month, and this will be the week to be watching closely. If there would be one it would be this week.

Her mood continues to be extremely positive. She is upbeat and a joy to be around. She is smiling, giggling, happy with life. Even the difficult challenges she seems to be taking it all the more in stride. I breath a sigh of relief.

Her skin is back to normal, from the anti-epileptic drug acne that occurred. Her self esteem is on the upswing.
( <------ don't you just love these banana dudes?)
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  #28  
Old 04-17-2008, 12:19 PM
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I think yesterday was Rebecca's 11th session. Sue was excited to hear that the neurologist was supportive. She also had a big smile on her face when I told her Rebecca has not had one seizure. She said that she has been able to get into the lower frequencies (which I take it is good).

Rebecca is doing so well in so many ways.

We also had her IEP two weeks ago, and she is being put into a special English class where they will help her with areas that her memory was causing difficulty in the past.
Rebecca looks forward to each day now, and practically skips off to class.

I am not relaxing just yet, but I smile inside when I drop her off now.
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  #29  
Old 04-17-2008, 01:34 PM
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  #30  
Old 04-17-2008, 04:59 PM
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Robin, what terrific news! Pam
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Old 04-17-2008, 07:26 PM
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Great news, Robin!

Quote :
She said that she has been able to get into the lower frequencies
lower frequencies rewarding is a protocol for coping with state of mind over-arousal.

Best to all!
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  #32  
Old 04-17-2008, 10:08 PM
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I have read elsewhere that this is a frequency that some people thrive at.

I was wondering if this is a level that creative types tend to fall into?
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Old 04-18-2008, 12:26 AM
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Originally Posted by RobinN View Post:
I have read elsewhere that this is a frequency that some people thrive at.

I was wondering if this is a level that creative types tend to fall into?
If we are talking about low theta/delta waves, yes, it is right, to some extents.
In some alerted states of consciousness during meditation, etc. there is high level of theta and alfa. And some people connect high theta with states of enhanced creativity.

But for seizure suffering persons – increasing of theta is not desirable state, due to the fact, that low frequency ( < 7 Hz) waves can accompany paroxysmal activities.

In case of Sue methods, with interspherical bipolar montage, “lower frequencies” are not those pure theta epileptigenic waves. So it is not dangerous for your daughter.
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Old 04-18-2008, 12:53 AM
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It is very new vocabulary for me, so thank you for helping me in my attempts to understand this treatment.

I am currently reading A Symphony in the Brain. I was told that there was the promise of a new updated edition of this book, due out soon.
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Old 04-18-2008, 01:09 AM
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You are very welcome!
Originally Posted by RobinN View Post:
I am currently reading A Symphony in the Brain. I was told that there was the promise of a new updated edition of this book, due out soon.
Great book! Actually, this book contains all necessary info about NFB and basic neurophysiology for common population, not professionals.
And thanx for your very interesting news about new edition!
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  #36  
Old 04-19-2008, 02:59 PM
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As of today she has had a dozen treatments / sessions.... NO SEIZURES ... even during her TOM.
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  #37  
Old 04-19-2008, 11:57 PM
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I have also decided to leave a list of the vitamin and mineral supplements that Rebecca is taking at this time. I have done extensive research on each and how it pertains to her situation.

Vit B complex (Integrative Therapeutics Inc.)
thiamin 100mg
riboflavin 65 mg
niacin 150 mg
Vit B6 71 mg
Folic Acid 800 mcg
Vit B12 100 mcg
Biotin 100 mcg
Panththenic Acid 200 mg
Zinc 1 mg
Manganese 1 mg
Chromium 100 mcg
Choline 50 mg
Inositil 50 mg
PABA 50 mg

Vit C (taken seperately from Selenium) (Natrol Ester-C)
Vit C 500 mg
Calcium 50 mg
Citrus Bioflavonoid Complex 200 mg

Vit D 1000 I.U. (Dry by Country Life)

Vit E 1000 I.U. (complex by Country Life)

Biotin 2000 mcg (sublingual by Solaray)

Ultimate Omega 1000 mg 2xday (Nordic Naturals)

Selenium 200 mcg 2xday (yeast free by Solaray)

Chelated Magnesium
500 mg 2xday (Country Life tablet not gelatin capsule)

N-Acetyl Cysteine (600 mg) (NAC by Uzzi Reiss M.D.)

L Carnosine 500 mg (Pure Encapsulations, Inc)

Adrenal Cortex
250 mg (NutriCology)

Taurine 1000 mg (Pharmaceutical grade by Uzzi Reiss MD)

If you have any questions feel free to ask. I am open to suggestions and comments, as I continue to learn to help my daughter stay seizure free.

Last edited by RobinN; 04-20-2008 at 12:00 AM.
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  #38  
Old 04-22-2008, 01:37 PM
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I want to pass on some more info that I have found. These are really worth watching.

http://www.youtube.com/user/othmerk
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Neurofeedback - Rebecca's Story

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Old 04-22-2008, 05:30 PM
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I am trying to put together a puzzle.

I got a call at 2:00 pm PST that Rebecca had a seizure. So I did what all good moms do, and I raced up to her school. She was sitting in a chair. This is in a new study skills class that Rebecca is taking for one period to get caught up with her English. It isn't a class taught by a teacher at the front of the room. I guess the instructor was doing something else, the aide was in another room and can't see where Rebecca was sitting, so they are relying on the others students seeing the event. It is a small class with everyone doing their own thing.

Rebecca walked over to the aide, a long time friend from her Elem. School days, and said I think I just had a seizure. She was asked what do you usually do for them, and she said I go to the nurse and then they call my mom.

When I arrived, Rebecca looked really angry. I was taken aside and I was told that no one saw this happen. I am thinking and thinking.... well maybe this is a new type of seizure. Perhaps she dozed off and visualized this. When I discussed this with Rebecca, she had tears in her eyes and said that she did go to the ground. Her head did hurt, and that no one had realized what had happened. She said she pulled herself up to her chair, and then went and told someone.

I am suspicious of the teachers, as if this were to occur, and they did not see it, that would be a bit of trouble for them. So it just might be easier to say that this is all in Rebecca's mind. She has never done this before... ever.

I did go back to the teacher afterwards and said lets just go on the assumption that this did occur, and no one saw it. I want Rebecca to know that what she says will be believed. It seems more plausible that she had one and no one saw it, because she has the typical memory loss that comes with her seizures.

Life is sure interesting.
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  #40  
Old 04-22-2008, 08:03 PM
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I have come to trust my recognition of post-ictal states in Stacy to recognize when she had a seizure even if I didn't witness the seizure itself. They are very consistent and noticable.

Sounds like Rebecca recovered really quickly. Give her my regards. The epilepsy journey is not finished yet, but hopefully the light at the end of the tunnel is fast approaching.
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