Neurofeedback - Rebecca's Story

[RobinN]

Hi Lonnie -
Rebecca's first group of sessions cost about $2000. We did get a 10% reduction in cost due to our connection with CWE. There are advertisements in the header of this forum.

It is my understanding that it does help with Epileptic and Non-epileptic seizures.
We did not do psychiatric treatment, though Rebecca has been seeing the same psychologist for four years. It has been invaluable to have that weekly session. It was suggested at one point that she have some psychiatric testing, but I refused it at the time, because she was on meds, and the Rebecca that I witnessed at that time was not the daughter that I know. Testing under those circumstances was ridiculous in my opinion. It has not been suggested again, since we have been making such wonderful strides with the nutritional approach.
Rebecca does not take any anti-convulsants. She does take a handful of supplements at this time, and her nutritionist wants this to continue for two years. However, once she is seizure free for two years, we will begin replacing the supplements with additional foods.
Neither did our insurance cover Biofeedback, but you can ask the neurologist for a prescription and at least use it for tax purposes.
I understand the financial burden, but the way I looked at it was we would give no thought to the cost of putting in a new engine into one of our cars, which would be similar in cost. We decided the risk was worth taking.
The distance for you is going to be a hardship. What we did one week, was do two sessions in one day. It was suggested that it is similar to a workout routine. If you do it frequently you will see better results. We were told that some people even stay in the town for a few days so that they can have more sessions without the driving.

Obviously everyone is unique, so the treatment will not always be the same. However, we began with 20 sessions. A home unit was then offered to us, which we did for about another six months.

I hope that information helps.

[RobinN]

Rebecca remains seizure free !!!

Today Rebecca passed her United States Figure Skating Association Junior Freeskate Test.

She has one remaining test (Senior FS) before she will be considered by the USFSA as a Double Gold Medal Skater.

I wanted to share this as it is quite the achievement.

[epileric]

Please send her my congrats... & to you too.

[Nakamova]

That's super Robin!

[Endless]

Wow! Congrats to Rebecca! That is an amazing achievement.

[lindinig]

WOW! That is really great! Congrats!

[RobinN]

Thanks everyone... I will pass on the Congratulations to her.

[BuckeyeFan]

She looks and sounds like a graceful young lady. Kudos to her parents.

[Bernard]

Double fantastic news! Congrats Rebecca!

[Blondie47]

Wow!

Seizure free and such a bright future ahead....Congratulations -- that is wonderful news! Made my day.

Take Care

[RobinN]

HA!!
W saw a new neurologist today... nice guy. His subspecialty is strokes, (HUH?) but I went along with it because the new PCP referred Rebecca to him. I thought, I can always learn from each and every appointment we go on.

He has the "basic" knowledge of seizures, however he "Did not feel comfortable being her primary neurologist if she was not going to be taking medication." He didn't mind if we kept the Epileptologist on board at USC, and he would be available in case there were an emergency where we would be needing the local hospital.

Not even a hint of a sparkle in his eye, when celiac, hypoglycemia, GI health was mentioned. Though I do give him credit, he did understand the hormonal connection.

I do understand their legal limits.

He suggested she have a new MRI since it has been since 2006. This way we can compare the two. I am going to send positive energy that there is going to be improvement in the scans. Read somewhere that Vitamin D taken by the mother during pregnancy reduced the chance of brain abnormalities. She is at an age where neurons are still changing.

I can be ever hopeful.

[Endless]

Robin,

It sounds like the new guy is a mixed bag. The MRI is a good idea, and he didn't laugh at what you've been doing for Rebecca's seizures. On the other hand, he won't work with you unless you drug her. Darn.

Where do you think you'll look for a doctor next? How on earth do you find the right one?

I went to the M.D. today that is an alternative medicine specialist. He had some pretty interesting ideas around things that could possibly be aggrevating my seizures, given my life history. They range from heavy metal toxicity to food allergies to chronic sinus infections plus a whole bunch more. We're investigating them all one by one. I found the food allergy idea to be pretty interesting, since I've tested negative for all food allergies. He said some allergies can fly under the radar. So I'm fasting for 5 days and then adding suspicious foods back in one by one. It may yield results, or maybe not. But at least I've tried.

[RobinN]

If our insurance will allow us to stay with the neurologist at USC, we will stay with her. She is outside of our network plan though. So if we just use her on a yearly appointment (or 6 mo) I would be fine with that. There is also another epileptologist that has been recommended to me and actually closer. However, the current doc does have a specialty of knowing a lot about hormones. I still will only use her for emergencies I think.

Do investigate them one by one, but also two by two. The sinus issues and the allergies most likely go hand in hand. Rebecca tested negative to food allergies, but high allergies to dust mites :/ We have hardwood floors, and not much growing there. I think she has sytemic yeast, because the slightest change in diet and she blossoms. You might realize that small issues that aggrevated you might be connected to something else. Rebecca also didn't have sensitivites to wheat and dairy, but after it being out of the system for months, she (and I also) have a reaction. Huge reaction to MSG too. I think when you clean the system for a period of time, the body is much more sensitive.

Great to find a doctor that is willing to look into alternatives.

[Endless]

the sinus infections are pure physiology. I'm plumbed wrong. need alterations.

the only things i'm extremely allergic to are drugs. many of them. not looking forward to fasting, but it's the quickest way to test the food allergy theory. i don't want to give up chocolate!!!!!! lol

[RobinN]

dark chocolate is actually good from what I understand

[kayochan]

Rebecca does not take any anti-convulsants. She does take a handful of supplements at this time, and her nutritionist wants this to continue for two years. However, once she is seizure free for two years, we will begin replacing the supplements with additional foods.

Hi There!

Congrats on your daughter and her great results both on and off the ice!

You mentioned about working with a nutritionist and dealing with food/supplements. I was wondering if it was possible to know which nutritionist you go to? I would love to try the nutrition/supplements path as you have for our son.

thanks in advance!

[Ruth]

Lonnie, I have the same problems as you do with neurofeedback.

Robin, I am really happy for you and Rebecca. Your research has paid off and helped all of us. I appreciate your sharing it with us.

[RobinN]

kayochan - The doctor is located in Pasadena, CA. His name is Dr Kurt Hong.
He is a nutritionist and an MD.
I will pass on the congrats.

Ruth - thank you for your kind words

[kayochan]

kayochan - The doctor is located in Pasadena, CA. His name is Dr Kurt Hong.
He is a nutritionist and an MD.
I will pass on the congrats.

Thank you very much! By the way, I think that your research and hard work to support your daughter has been very inspirational to me.

Thank you again!
Kayo

[RobinN]

That means a lot to me Kayo. Thank you for saying so