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Old 04-22-2008, 08:49 PM
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I fully agree with Bernard.

I've got similar methods to recognize possible seizures of my wife during my absence.

Robin, ask your daughter about signs, that can point to degree of severity. I.e. tongue biting, feeling of heaviness etc. Sure, you know better than me about that ... Try to assess this.

But I'm sure that last seizure was far less severe.

all the best!
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Old 04-22-2008, 10:45 PM
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Yes, that is what I was thinking too. It must not have lasted very long. Perhaps other students just thought she went down on the ground to pick something up. She did have the headache.

So I do feel that it was less severe.
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Old 04-25-2008, 01:19 AM
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Back on track here. Rebecca had her 13th session yesterday, and this afternoon she landed all of her double jumps, including the double axel.
This alone is going to put her on cloud nine.

Way cool!
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Old 04-27-2008, 05:11 AM
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That's good news to hear!
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Old 04-30-2008, 05:36 PM
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We are counting down to our final handful of sessions. This has been such an easy and fascinating experience. I am not sure if we will rent the equipment or sign up for more sessions with Sue. She will take another evalulation in May, and she will determine what the next recommendation should be.

Life is good.
Still attempting to correct the intestinal issues. I do hope it clears up so that I know for certain that she is receiving the best nutrition for proper brain function. In our initial orientation, Sue mentioned she sees this a lot with seizure disorders at least those with a sensitive disposition. So what came first.. the chicken or the egg.

Overall I feel we are on the upswing... which is a great feeling.
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Old 04-30-2008, 08:09 PM
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Old 04-30-2008, 08:50 PM
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(that's a double-double)
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Old 05-02-2008, 10:46 PM
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Another good week...

I was just doing some research and came across this website. I thought it was designed very well, and the information on NF is really easy to understand, so I thought I would include a link.

http://www.brainwisetherapy.com/neur.../overview.html

I don't know these people, and I don't endorse them. I just think they did a great job on their site.
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Old 05-14-2008, 09:39 AM
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I need to add this, otherwise this "story" wouldn't be true.
Neurofeedback is not a Magic Bullet, as Bernard would put it.

Rebecca, had a seizure last Friday. I hesitated writing about it right away, until I had a full grasp as to what was going on. It was before lunch, (yet she had eaten her lunch already), and she was in a class that she adores. A small group in Small Business. She quietly went down and had a rather long seizure that went into a second one right away. The school was concerned, as I would hope that they would be, and the EMTs came immediately (But not as quick as me). The students were wonderful in this class, and they didn't want to leave Rebecca, even when the bell had rung.

The paramedics did what they do best, and allowed me to take over (with a signed waiver of course). She was groggy, and was definitely defeated. Bummed to say the least. She could remember skating that morning but nothing else. I monitored her for a while, and then let her go on with her day.

As I always have done, I considered all possibilities as to why this happened now. One being, this month we got off on the wrong foot, and we did not begin to use the bio-identical hormone cream for about the first five days. At that time, I didn't want to play with this delicate balance, so I made the decision not to start using it out of sequence. I think this is more powerful in her system than we know. Her neurologist had also suggested that instead of stopping on day 14, that we taper it off a bit more. Her system seems to need that protection the first couple days of her period.
Well guess what... that night she started. It was her TOM.

Second thought... she has been off schedule, as teens certainly can be. She is preparing for a spring show at her skating rink as well as a dance show two weeks after at her school. She is a professional and puts a lot of energy into these performances. Since part of her "protection" is a higher than normal dose of magnesium, we have not always been faithful to the daily plan.

Interestingly though. Last Monday night (I think I mentioned in a post somewhere) that she was getting these strange sharp pains. She had them again yesterday. I put in a call to the neurologist and was waiting for a return call. In the meantime I also called and spoke to Sue Othmer. She suggested that they might be migraines. She reminded me that we had seen a slight change in Rebecca's types of seizures after NFB therapy began. Her recommendation was that this might be a migraine (now known to be in the seizure family) and that if we treated it with a NFB session, and we saw it subside, that we would be on the right track. Of course she wanted me to follow up with the neurologist, but we scheduled a treatment for this afternoon. I am very thankful for this as she has been travelling for the last two weeks and I know she is exhausted.

Then I received the call back from the neurologist and their recommendation was to make sure that Rebecca was taking her magnesium as prescribed, and that if the pains continue, to use some ibruprofen. Okay... suggested migraine from both camps. I will relax and make sure that the magnesium is taken both day and night. The added NFB session today hopefully will help with this.

One step back, two forward. One must always focus on the bigger picture. And... to remember to stop and smell the roses, as it is springtime.
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Old 05-14-2008, 11:03 AM
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Sorry to hear about the seizure(s). I would have been very surprised if Rebecca had become completely seizure free in just a few sessions. In Stacy's experience - and in all the studies that I have read about it - the typical threshold for efficacy is around 50 sessions (or 5-6 months).

Her seizure pattern does appear to be changing though and I suspect it is just a matter of time before she's retrained the brain sufficiently to avoid further seizure activity.

It's important too to be vigilant in other areas - regular sleep, no cheating on sugar, etc. At least, that was the case with Stacy.

Neurofeedback is powerful, but its not magic.
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  #51  
Old 05-16-2008, 04:35 PM
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We went in on Wednesday, to see if NFB could eliminate the sharp pains that Rebecca had been feeling. They seem to have subsided. Possibly this in the past would have been a seizure. No real way of knowing that. All I know is she use to have 5 or 6 seizures a month, and now... 1 in two months.

We have another appointment today, and again tomorrow morning.
All in all this experience has been a positive one.

I don't know if other members are aware, but the Othmers had a son with Epilepsy. He eventually lost his life to a seizure he had. His whole family is devoted to NFB and the benefits it has shown with seizures. To have my daughter be treated by Brian's mother, is very special to me. I am sure he is smiling down on us.

http://brianothmerfoundation.org/
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  #52  
Old 05-16-2008, 11:23 PM
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Another good session today.

I also forgot to mention. Rebecca called me yesterday. She told me it was a lucky day for her. She found $20 in her jacket pocket. Then when she went to her locker she saw a $1 on the ground and figured it was her lucky day, so she picked it up. She has no clue that 21 is lucky too. She was pretty proud of herself, but then she went to math class. She said you won't believe what happened mom. I got an A+ on my Algebra test.

You all have no idea what this means to both of us. Last year she ended the year with a D. She was really flying high. Later on that day her Calif. High School Exit Exam results came. They have to take this test beginning in 10th grade. If they don't pass they can take it two more times. It has a Math part and and English part. I was really hopeful about the math, as this year she has done quite well in the class. I was not expecting her to pass the English, since she was rather behind the past two years, and with memory issues this has been a bit difficult for her to stay current. Well... she passed both of them.

When I texted her and told her.. she said "you are kidding, right?"

Nope, dear girl, you are movin and groovin lately.
Can I dare say, I think that the neurofeedback is improving her thought proccesses?
It certainly is improving her confidence that is for sure.

I talked with Sue briefly about the fact that our sessions are coming to a close, and she mentioned us taking a unit home, so we don't have to make the hour drive to the clinic. I told her I was hesitant, but she says it is very easy, and they would be available to teach me, and if I have any questions. This is exciting, because we can have a consistent therapy if it is at home.

I don't know the cost yet.
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  #53  
Old 05-16-2008, 11:28 PM
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Awesome! Neurofeedback definitely improved Stacy's overall cognitive functioning. I don't doubt that it has helped Rebecca think with greater clarity and focus.
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Old 05-18-2008, 07:06 PM
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Hi, Robin!

I'm very happy to hear these wonderful news!

Quote :
I talked with Sue briefly about the fact that our sessions are coming to a close, and she mentioned us taking a unit home, so we don't have to make the hour drive to the clinic. I told her I was hesitant, but she says it is very easy, and they would be available to teach me, and if I have any questions. This is exciting, because we can have a consistent therapy if it is at home.

I don't know the cost yet.
It's really not too hard to handle this unit at home. I hightly recommend you to continue training at home.
I don't think that leasing is very pricey.

Besides, when you come closer to the training process, and see this process inside, who knows... maybe you'll want become NFB provider yourself. I'm not kidding.
It's a real magic to see positive changes in the brain of trainee, and to know that you are a part of it somehow...

All the best to you!
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Old 05-18-2008, 07:11 PM
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Your support brings a smile to my face.
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Old 05-25-2008, 11:19 AM
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I discussed the process with Sue, and it sounds like it will be a good option for us to do the home training. The cost right now is reasonable ($300/mo), this includes all of the equipment. I have an appointment with her to learn how.

We did a quick assessment of Rebecca that day, and from prior to starting NFB to how she is doing today, on all levels it is positive. Even with the setbacks, in every aspect her life has improved.

On Friday her science teacher came up to me, (I was volunteering in the health office) and she hugged me and said, "Your daughter is great! .... and doing great in the class." I like those moments.
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Old 05-27-2008, 10:25 PM
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Last night, about 5 min after Rebecca lay down to go to sleep, she called out and I went in to see what was the matter. She was gripping her head. She said her head hurt. It came on suddenly and she said it felt like it was being squeezed. I asked some more questions. her sight was ok, and she didn't think it was bad enough to call 911. So I sat and talked with her and rubbed her back a while. I gave her some excedrin migraine after I was fairly certain that it was a headache. She said it moved from one area to another while I sat talking to her.

I then moved her to my bed, and her dad took hers for the night, so that one of us was with her just in case something else happened. I rubbed her head and talked to her about experimenting with visualizing the NFG screen. She thought that was silly, but was willing to try (so I think she did... not able to be sure).

I am curious if this is just a seizure that has just been turned down from a 10 to a 5.
She has never been a migraine/headache kind of kid.

I also am fascinated as to what is happening inside this organ, because being only 16 her brain still is growing. How does the "exercising" of it change the growth pattern?
Or the connections that are being made.

Oh, BTW.. she was fine when she woke up. She didn't feel like she slept very well, but I certainly don't think she had a restless night.
She woke up in a good mood today.
It is a busy week for her though, so no NFB session until Saturday.
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Old 05-27-2008, 10:47 PM
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Hi, Robin!

Actually, association between migraine and epilepsy has long been discussed amidst neurologists and neuroscientists.

See that, for example:

http://dx.doi.org/10.1016/j.yebeh.2003.07.003


If you ask Sue about this (and you definitly should) , she possibly could explain, that both of these phenomena are linked to overall functional instability of the brain.

So, the root of these things is, may be, one - not sufficient functional stability of the brain.

Anyway, it seems to be sort of trasformation of this instability. From more to less severe manifestations. Very good sign to me.

Best,
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Old 05-28-2008, 07:14 AM
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Yes I have recently been reading that this is the case. I have had migraines for so many years, am definitely interested in this latest connection.

We always bring up any changes to Rebecca's episodes and this helps her to understand how to approach the therapy.

I have also been coming to the same conclusion as you have, and I am hopeful that this is a less severe "attack". Only problem is she was conscious to feel this one. While most seizures she has no memory of... only the after effects.

Thank you once again for your continued support.

BTW Bedolaga - I like your new picture.
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Old 05-28-2008, 08:29 PM
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Hi, Robin!

Quote :
Only problem is she was conscious to feel this one.
Actually, it's not a problem, but rather a good sign. Loss of consiousness is a much higher sign of severity. Though I understand your feelings.. Acute pain is very bad thing...

Quote :
BTW Bedolaga - I like your new picture.


Confucius said, "Learn as if behind, and still be afraid of losing what has been learned" ((C) Lun Yu)

Best regards,
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