Neurofeedback - Rebecca's Story

[Ruth]

Hi Robin

Yes, 50 is way to low. It can quickly go lower and into a coma. Then, I am talking about my being a diabetic.

But, seizures can be caused at 30 to 50. That is way to low Robin. I hope they get her levels straigtened out. Let me know.

[RobinN]

I do think that it is triggering a seizure rather than a coma.
But you are right, we need to learn what to do to make sure this does not happen again.

Frustrated once again, as I asked for this test last spring. I was told it wouldn't be useful for for us. Grrrrrr.....

[joan]

When was the last time she ate before the incident? Maybe she hypogylcimic? Maybe she cant go 8 hrs without eating? There is a fasting blood test for sugar reaction, maybe that will help?
I hope you are onto something.

I wish you well *
joan*

[RobinN]

That is the test that she took Joan.
It is called a 3 hr Glucose Tolerance Test and her last draw came in at 50.
So my point to the doctor (pediatrician) was, what then happens at hour 4.
It isn't that her draw after fasting was bad. It was after an hour of exercise, and then some.

I have been saying for over a year, that something is happening at that time period of 9:30 to 1:00 that hits her.

Her very first were most likely a blood sugar issue. Then we got on the med merry go round which did quite a number on her, but didn't remedy the sugar issue. I then saw what I classify kindling occuring as a stress release, and that has been helped by Neurofeedback. Now we still have the underlying issue of Hypoglycemia (low blood sugar) with a tendency to seize at the lower numbers.

It was a question that I had asked the doctor back in June of '06
"Can diet play a part in seizures?" The answer I got was, "No".

[joan]

Well, we know to ignore him lol If he doesnt know why she has it, how does he know whats effecting it?? Diet definitely plays a part. It just up to us Mom experts to figure it out. I swear after this Im going for my PhD cause it cant be any harder lol

Are you keeping a food journal? Maybe she needs a snack before bed? Protein not carbs?? Maybe she cant go too many hours without eating? She seems to be very active and maybe needs more? Does her sugar drop more at that time of the month?

Its really a puzzle and I think you are doing so well. Hang in there. I do think you are going to figure it out, you are so determined*

joan*

[RobinN]

I am not keeping a food journal. I think I would lose my mind if I had to do that too.
So be prepared for my mind on the loose.

She always has something before she practices in the morning. I have been very careful recently to make sure it is a good food, oatmeal, eggs etc. She might need more protein when she gets home, before heading off for her classes. She says she nibbles on her lunch, so I don't know why the drop.

Seems to happen more during her TOM, so I was also reading that the adrenals (which I was figuring before) play a role in this. Might even play the role in her hormonal imbalance.

I just wish they could refer me to a "SMART" doctor
Of course I will learn what I need to learn, but I really am tired of all of this.

[joan]

You know, I went crazy looking for a Dr that was "into" the genetics of E. Im hoping to feel safer with him and for him to be a bit more pro active with my kids. Arent there epilpetologists who specialize in TOM? I thought I ran across a few in my research. Maybe that will help. Seems each DR has their "favorite type of E" and IF you dont fall into their specialty, to me, it seems you just get basic care. I want more than basic care. Maybe time to search for someone who believes in nutritional effects and hormone inbalances?

Hang in there Robin, we are going to figure it out*
YOU give me inspiration.

joan*

[Bernard]

... Arent there epilpetologists who specialize in TOM? ...

Dr. Martha Morrell wrote the book on catamenial epilepsy.

[RobinN]

Rebecca's neurologist is a specialist in this area. However what I am realizing is she is an expert in pharmaceuticals to help cope with this. What is needed are doctors that are interested in finding the cause to the imbalances.
It appears to be an adrenal problem many times, and that is another specialist. Of course that specialist most likely has not understanding of seizures.
Then is the adrenal problem due to nutritional deficiencies? Haven't found a doctor yet that is willing to refer to a good nutritionist or can't because insurance won't cover it.

So back to the University of Google.
I have made an appt with Rebecca's neurologist. I hope to be enlightened.

[joan]

So we are with these new Drs and naturally after only 1 visit I have an emergency and they have to jump right in. I do have confidence in them. We shall see how that goes : )

With my kids its has to be any and all of the hormones that kick in at puberty. Those hormones naturally excite the brain. I was speaking to the new Dr and asked if my thinking was on the right track? Then I told him get off his butt chatting with me and FIGURE IT OUT! : ) Im working on my shyness lol Good news is they did get a spike a night from my daughter so we officially are in The National Institute of Neurological Disorders and Stroke Epilepsy Phenome/Genome Project (EPGP).

What a week

joan*

[Zoe]

That is the test that she took Joan.
It is called a 3 hr Glucose Tolerance Test and her last draw came in at 50.
So my point to the doctor (pediatrician) was, what then happens at hour 4.
It isn't that her draw after fasting was bad. It was after an hour of exercise, and then some.

I have been saying for over a year, that something is happening at that time period of 9:30 to 1:00 that hits her.

Robin,
My seizures often happened within an hour or so of lunch. When the dietician had me stop drinking milk and go on the gluten free diet, they pretty much stopped.
Here's a link to check out; Maybe some healthy food. fruit perhaps, (not too sugary) in the time frame she is most likely to seize.

seizurethreshold.orgraise your seizure threshold and transform your life
.... If I tried to eat a sugary snack to head off hunger, I would almost always have a seizure. ...
http://seizurethreshold.org/jensstory.html

[Ruth]

Hi Robin

I read the directory of where the neurofeedback places are. Some said that they have Cygnet and some said they did not. What is the difference? Is one better than another?

[RobinN]

Rebecca had her second seizure of the month last night.

She was very excited because she was in a dance show at school. It was a show for the parents of the students. They were showcasing their semester final dance. She was sixth on the list and was just awesome if I do say so myself.

We were barely into the 7th number, when a teacher came and grabbed me out of the audience and told me that Rebecca was having a seizure. She did not even make it off the wing of the stage. She had finished by the time I got there. I eventually got her up onto a couch that was nearby. She rested, but indicated she did not want me there, and to go watch the end of the show. I understood her to be embarassed by this, which was to be expected.

By the end of the show, 30+ min later, she was fine. Except she was quite angry that she did not remember dancing or much that led up to it.

I did not even think to check her blood sugar before the show. Though I did give her a stuffed baked potato about 2 hrs before. I am not sure how much water she had during the day.

She did begin her TOM today.

researching: Insulin, hypoglycemia, seizures, hormones, hyperglycemia, blood sugar,

neurologist appoint on March 25th
Making an appt. with a respected Traditional Chinese Doctor this week.

[RobinN]

We have some good news...
Rebecca was just hired for her first job. She is now a professional skating coach. She will teach group lessons, and can take private lessons when asked. (going rate is $1 / min)
Not a bad first gig.

Of course this was not offered to her by our local rink. The one that she has been skating at for 13 yrs. Nope, they have not even responded to her application.
She was hired by a rink that is about a 40 min drive from our house. Her parents are her driver for now, as she is not able to consider getting her license yet. However, her boss knows her from when she was a child, and has watched her progress. Her boss also has one son Rebecca's age that had seizures for a while, so she knows her history and is perfectly fine with it.

I am so excited for her. She actually is the highest level skater on staff, which is a HUGE boost to her self esteem. So for now, two days a week, and she can advertise her business and fill her schedule with private students.

There is a metro station nearby, but it is not the best of areas for a young lady to be walking at night time. So we will see... as she gets to know people she might have transportation to the station and make her way home. For now, her dad and I will split the job of driver.

Thought you all should know the good news.

[Ruth]

Robin

That is such great news!! It shows what epileptics can do!! She is a great example and so are you and her dad. I am thrilled for all 3 of you. Let me know how she does. Since her boss does not mind and knows about epilepsy she will have no problem.

I am proud of the whole family. I know you are too for doing such a great job. It is great that she wants to be independent.

Thank you for sharing it with me.

[joan]

Congrats * That is wonderful news. Shows her, her efforts and hard work pays off. She must be thrilled. I am so glad all goes well.

joan*

[Ruth]

Yes, congratulations, a party is in order.
Ruth

[RobinN]

Hi Robin
I read the directory of where the neurofeedback places are. Some said that they have Cygnet and some said they did not. What is the difference? Is one better than another?

This might be some information that will help you Ruth
http://www.eeginfo.com/cygnet/

It is the software that is on the equipment that we are renting.

[RobinN]

Can't believe it... the antibiotics that Rebecca was on, have now allowed a yeast infection to flourish.

[epileric]

Can't believe it... the antibiotics that Rebecca was on, have now allowed a yeast infection to flourish.

I learned from an old roommate that drinking lots of cranberry juice (unsweetened) should help that.