Neurofeedback - Rebecca's Story

[RobinN]

Yesterday, Rebecca had another MRI. They would like to compare it to the one that she had in 2006. Not a bad idea IMO, but an expensive test for someone that is doing extremely well. I guess they figure that she has had 2 seizures this year, so we are definitely not out of the woods yet. Far better than 6 per mo. she was experiencing in 2007 while trying meds.

We get the results tomorrow (or the doctor does).

[RobinN]

Took Rebecca to her latest of doctors appointments. This was for a GI M.D.

He wants to test Rebecca for Celiac, though I have read in many online sources how this test is vastly overrated. There are many false negatives, so I am not greatly excited about it. Plus she does have to be eating gluten, and much of my research says that challenging the diet for only two weeks isn't going to cut it. So... I am searching for info on the % of false negatives and such.

He tells me there is nothing wrong with her GI system now. Yes, because I have spent the past three years supplying her with good nutrition, and learning the positive benefits of magnesium etc. Understanding how healthy elimination is a key to overall health. Hello doctors...

He did agree with the probiotic direction, and I even read that there is current research that shows probiotics actually recovering Celiac patients symptoms.
Celiac - Probiotics
However, the one probiotic (Align) that he claimed was far better than the one we are currently using (Natren-Healthy Trinity) has a lower bacterial count.

Align - Each Align capsule contains at least 1x10(ninth) colony-forming units (CFU) of live Bifantis bacteria at teh time of manufacture. This is the same as 1 billion bacteria

Natren - 1 capsule
Lactobacillus acidophilus NAS 5 billion cfu
Bifodobacterium bifidum Malyoth 20 billion cfu
Lactobacillus bulgaricus LB-51 5 billion cfu

He also mentioned that there are mitochondrial syndromes they are finding that do cause seizures. This is an area that has come up frequently in my reading, since I have three children with auto-immune issues.
All he recommended here is to add supplements:
COQ10
Carnitine
frequent meals - don't miss carbs

She did start her period that morning, and felt awful while we were there. Actually throwing up in the room while waiting for the doctor. "How embarrassing!" she said.
She got clammy and then cold afterwards. I wish I had her glucose meter with me to see what was occurring. She felt awful yesterday (the day after) as well, but today she was ready to go back to work.

If this has occurred in the past, and she tried to push through it at school, I can see how it would send her over her threshold level.
She is now 5 months seizure free, and in one week will be the longest she has been without a seizure. So we keep on keeping on...

She sees an endocrinologist on August 30th

[lonnie]

How wonderful she has had some success.

Boy, what a big thing nutrition can be. A month ago I started on a nutrition program.

It is primarily made of by eating good healthy food. I found that looking at the back of packages and looking at the ingredients could make anyone sick.

The program focused on eating good healthy food, getting enough sleep to refresh yourself (I am never very good at this) Moderate exercise is suggested.

Well, you know as well as shedding some excess weight for the first time in 16yrs, my seizures are under control.

There have been some other changes that may have contributed to controlling my seizures but I believe this has been a contributing factor. Even though my excess weight is gone I am determined to eat and sleep better.

Maybe others can find some help from this note.

I have had some stressful situations I've been dealing with which have taken a lot of my time in the past couple of months but I am resolving them and intend to be definitely back to our program more. See you all soon and more often. Lonnie

[Bernard]

Thanks for the update Robin. Wishing Rebecca all the best.

[Rae1889]

"She did start her period that morning, and felt awful while we were there. Actually throwing up in the room while waiting for the doctor. "How embarrassing!" she said.
She got clammy and then cold afterwards"

Is it possible that this was a reaction to a smaller type seizure>

[RobinN]

Lonnie - great to hear that you are seeing success with your new plan. I am sure others will be encouraged to try the same.

Bernard - thanks so much. I couldn't have done it without you. You gave me the support I needed here to trust my instincts, and it is working

Rae - No.... no seizure. It was her bodies reaction to the hormonal changes. In the past it MIGHT have tipped her over the threshold but this day, she just was out of sorts (so to speak). We need to figure a way to allow her body to deal with this changes in a more graceful manner.

[Rae1889]

ah. the reason I asked is that a friend of mine often experiences complex partials that look similar to being ill. then when its over it causes vomiting and sorts.

[RobinN]

NEWS:

Rebecca and I went to a new endocrinologist today. It really was a positive appointment. The Dr. had access to a lot of her prior test results on her computer. She was able to pull up all the highlighted out of range numbers and make connections between Rebecca's history and what the tests were saying.
*** I have to add that this was the first time any doctor had ever looked at her tests as a collective.

The Dr said she believes that her seizures are diet related. Yet she wants Rebecca to have more specific tests, to rule out possible causes. She has asked for a ultrasound of her thyroid. She said she was going to pass her file to a dietician, and we already have had email contact today. The dietician is also hypoglycemic, so she can relate to Rebecca in more ways than one.

The Dr. has asked us to test her glucose a few times each day, keep a log, and we will then discuss. It has been a long 4+ years, but I feel like we are finally in the home stretch. Of course a lot is now in Rebecca's hands. She has to be motivated to follow this advice.

Oh.... and today was Rebecca's first day at College.

[kayochan]

Really great news!!

[Nakamova]

That's so great Robin! A real testament to your persistence and insight.

[RobinN]

Thank you both.
Appreciate your comment Nakamova, as other than CWE, it has been quite a lonely journey.

[joan]

Congrats on Rebeccas first day at College!! What an acheivement!! I am so happy she is doing well and you are getting closer to the truth!
joan*

[Elisa]

Does anybody know how well NFB works on Complex Partial seizures?

[Blondie47]

RobinN,

Good to read your updates, it is a lonely journey - know that you are breaking ground for those who follow - all the best to Rebecca!

Take Care

[Bernard]

Does anybody know how well NFB works on Complex Partial seizures?

IIRC, studies of NFB and epilepsy have shown it to be helpful for just about all types of seizures. The Andrews-Reiter clinic has a small study specific to complex partial seizures posted on their website: http://www.andrewsreiter.com/complex.html

[RobinN]

Thanks a bunch Blondie.

2006 MRI was compared to the 2010 MRI Rebecca just had, and we were told there is no change. She still does have a heterotopia and another part that did not grow completely together... didn't catch the medical term for it. Good to know that one can remain seizure free, even when you have an abnormality on the brain.

The neurologist seemed to be less nervous about working with Rebecca. Actually I think he is impressed that she is doing so well, and not on medication. He is pleased that we are working with an endocrinologist that is in agreement with the nutritional approach we are taking. We will keep the epileptologist at USC on our team in case of emergency.

Rebecca has had a great first week of College and is feeling confident taking the bus and metro. Which is a big thing here in Pasadena / L.A area.

Good news.

[RobinN]

Today we took a cookie jar full of home made cookies to the Fire Station, to say thank you for their care when Rebecca had seizures at school. They couldn't have been nicer.

They even thanked me for my support. They told me it was very helpful that I was able to be at the school when they were called.

We have considered going to the Fire Station near her college, but I think I am going to have faith that they will never be called.

[RobinN]

We are going on our 6th month without seizures. So very excited about this.

This week Rebecca had about 15 vials of blood drawn. For a celiac test and for ... I am blanking on what the other tests was for. Something the endo requested. We had a call that the celiac was negative. I know this test is questionable, however Rebecca is not 100% gluten free at this time. I will continue asking her to eat as she has been since it seems to be working for her.

She has been complaining about her eyesight. Interesting because the endo has asked for an eye check to make sure her issues are not eye related. I just think the vision is related to the overall health... part of the package. In fact a quick word related search in Google, shows that vision is part of non-diabetic hypoglycemia. Another appointment to make.

Next week she goes for an ultrasound of her thyroid.

She has been practicing driving with her dad on Saturday's after school. The neurologist and I are in agreement that she can start driving after a year seizure free. She is half way there.

[Nakamova]

Congrats! Every month must feel like a validation, especially now that Rebecca's started college.

[BuckeyeFan]

Love the good news.