Neurofeedback - Rebecca's Story

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So Robin,
How did Rebecca do in the skating competition she was in? Or did I miss something?

Boy, it all works together(I speak here of all the challenges you and Rebecca have had)and it all comes back to diet! It's hard to control, but I see more and more how necessary it is.

How is her neurofeedback doing? You speak of a lack of confidence in her; I would think that as she gets those darned seizures and other problems under a control that she realizes that she is in charge of, that her confidence level will go up.
 
Thanks for keeping up with her progress Molly.
She did not do well at the competition. The jumps are rather difficult, so she had not been consistent with them in practice. Our goal for this regional comp. though was just to see her back at this level once again. The past two years has been a nightmare, so just to have her enter it was a big deal.

Yes I agree nutritional choices are at the root of her issues, and many others as well. It certainly didn't happen over night and won't change quickly either. However, I do see it moving in a positive direction. Which makes me believe that I am on the right track.

The neurofeedback is helping a lot. I believe for Rebecca it helped with the kindling effect that seizures can manifest. I do believe that when she is feeling better in general that her confidence is up. She has an overall bright spirit, and this certainly darkened her days. However, the healthier she becomes, the bright spirit returns. I don't believe that meds are the only way to appoach this, or depression. Problem is finding people to support you in the effort. Because it takes a great deal of perseverance to dig for answers. I have been told that once the liver is uncongested that a change in mood is evident. We have completed a months worth of this and so far so good. She is in the middle of her TOM right now, and other than a headache, she has not reported any other seizure type symptoms. I am not ready to cheer just yet.

I am pleased with the over all progress that we are seeing.
 
Pass on a hug from all of us.

Competing at that level is success in itself. You don't get there without talent and perserverance. I used to run cross country and so did my oldest daughter. We always said anyone who ran the race, even if they came in last, was succeeding more than those who didn't run.

36, 37, 38, 45, 55, 99, .....
 
Thank you Dale, I really appreciate the support. I will show this to Rebecca
 
Hi Robin,
I have finally had a chance to read through yours and Rebecca's Story. I cannot tell you how much hope I feel after reading this. I checked out Dr.J's site and will definitely follow his advise, Alex is on the gluten free diet, but he has agreed to eliminate the other items as well. It's funny (but not) he was seeing a Naturopath back in June who had him on this diet as well as a supplement to cleanse his liver, but he only stuck to the diet for a few weeks. Then he got into weight lifting and started using some kind of powders, that I told him I didn't think where a very good idea and I did not have a good feeling about them. Then after 6 years seizure free he's had 5 since the first week of September. It really makes me stop and think! Alex is going to see his neuro in two weeks, we'll see what she says about the Dilantin that the hospital put him on. He is feeling really exhausted by mid afternoon and then his eyes do that funny blinky thing, I'm sure it's from the meds.
You have been through so much with Rebecca, Thank you so much for sharing your wealth of information.
I will check in again to see how she is doing. It's amazing how the people in this forum start becoming a part of your daily thoughts, and how I want to keep checking to see how everyone is doing.
Thanks again.
Kathie
 
Hi Bernard,
Alex was taking Creatine and Whey Powder and he was also eating alot of cheese and yogurt.
We asked his neuro about the weights and she said it would be fine for him to do and she asked him if he drinks lots of water, which when Alex and I discussed this he is probably drinking too much water. She had mentioned drinking gatoraide as well, which he does. I had a really bad feeling about these supplements but could not get him to listen to me, now he is listening to me.
Alex is going to follow the GARD diet (even though I'm still a little confused).
From what I understand, it consists of cutting out gluten, casein, soy and corn, which is what his naturopath told him to do. What about meat, i.e. beef that is grain fed?
This part is confusing me, because I read, beef and chicken are grain fed and could be a problem. The naturopath said that Alex was still getting gluten in his diet from something, which I couldn't understand because we are sooooo careful. Although occasionally he has eaten out, which now he intends to avoid.
I was up until 2:30 this morning reading everything I could find, I feel very excited about the diet helping his seizures and I want to do as much as possible to get him healthy again. The poor guy has lost so much weight over the past couple of months, it has been a huge issue with him putting on any weight, which points out the fact that he is probably not absorbing what he needs from his food and vitamins/mineral supplements.
With the weight training he was doing he actually did put on weight for the first time in years. Now we have to do it correctly. I am going to pick up some of the books that Robin recommended. If you have any further recommendations regarding the diet, etc. I appreciate it.
I have one question as well, do you or Robin think the neurofeedback is a good idea to start right away or wait until he is more stable?
Thank you for this information,
Kathie
 
Hi Kathie - So glad to hear that Alex is on board with the nutritional changes. I really try to stay away from using the word diet, as it comes across as a negative. If you see the changes as being a positive, and helping your body heal then you don't feel so deprived.
Others eating the SAD will most likely have medical issues of their own, in time.

I make every attempt to buy organic meats. Also, I read somewhere, I think on Dr Mercola's site, that if there is one food that is organic make it eggs. I buy cage free organic eggs. There is also gluten in some supplements and in toothpaste.
You might join the GFCFkids yahoo group as there is a ton of information, recipes, and support. There are some kids so sensitive that if they play with regular playdoh they have a reaction.

I would also suggest that you read the information here on excitotoxins, since they can be hidden in so many foods under about 40 different names. Reading ingredient labels is such a pain, but helpful when it comes to seizures.

I think NFB is great to begin at any point. I can't remember how long Alex has been dealing with this, but it is my opinion that if you are able to stop the kindling effect early on, you are one step ahead of the game. We were also told that it was a positive move to already have Rebecca making nutritional changes and taking supplements that support brain health.
 
This doctor couldn't say it better.
My research has brought me to the same conclusion...

 
Hiya * Im curious to how things went. This may be something I look into for my son.

How are you guys making out?

Thanks
joan*
 
We are making out really really well.
I can't say we are out of the woods yet, but at least now I have HOPE.

There are no side effects since she is not on medication.
We have reduced the seizure activity from 6x/mo to less than 1x/mo
I believe I am healing from the inside out, and hope to bring her hormonal levels back into balance so that they do not have the strong hold on brain activity any more.

I am still considering chelation as a major factor in the healing. The heavy metals need to be removed. She has been to the dentist and I am assured that she no longer has any mercury in her teeth. So I think it is about time to begin.
 
Robin, I have been reading your daughter's story, Rebecca. I am most interested in the idea of NF, however, I only have medicare/medicaid and no $$.

You said in one post that you have migraines too. I was told (??) that they are hereditary and definately linked to epilepsy (??).

I have read much of what you wrote about "your girl" (bless you) and her situation and have no words but care.

She is so young and has the whole rest of her life ahead of her. It is so fantastic that she has a mom who is so devoted to her and finding out NOW how to help her.

I was also reading about the "EMT WAIVER" - I KNOW when I need to go to the ER, but Carey and I deal w/ most of my weirdities. Seizures, migraines, pulmonary probs, IBS, GERD, etc.

Your daughter is primary here and I have hopes that better days are ahead.

One day at a time. We can only cope (CWE) one single day at a time.

Blessings to you and your child.
 
Thanks so much Ziggidypoo
Some days are easier than others, as teens have their moments. I am going gray rather quickly this time around.

I do understand the frustration regarding the cost of neurofeedback. I do hope with more light on the subject we might see some changes in coverage by insurance providers.

There is new information out that migraines are in the seizure family. As far as being hereditary, that I am not sure about. It seems our similarity is in the hormonal dept, and that is what is triggering each of our. However, magnesium has helped me, and I am hoping I can find the kink in her system soon.
 
Two minute tonic clonic this morning around 8:30
EMTs were called. The teachers have been given the freedom to call whenever they feel it is necessary, even if the neurologist has said to wait 5 min. I don't fault them. I love our paramedics. They make it so easy for me to sign off on their liability, and I also get some vital signs taken which is helpful.

I tested Rebecca a few days ago and found her to still be highly acidic. I know this can be a seizure trigger.
 
Sorry to hear that! Hope you feel better soon Rebecca!
 
Awwwwwwww

Bummer Deal! Tell Rebecca we all hope she's up and around soon!!!
 
She is a trooper... she sleeps for about a half hour, in the nurses office, and then is up and ready to face the world again. She hates to miss classes. I stay around, ask her a few questions, and make sure her eyes are focusing, and then give the all clear.
 
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