Neurofeedback - Rebecca's Story

[Endless]

Seizure free? Wonderful!

That's got to be a relief and feel really good for you, and especially for Rebecca!

 

[Bernard]

Fantastic. Kudos to Rebecca for sticking to the regimen and achieving this success.

 

[RobinN]

Rebecca woke with a bad headache this month, and didn't feel well for the remainder of the day. But other than that, we have made it through another TOM.

Her dietary habits have plummeted as she is more on her own, with work and school. She may think it is an occasional misstep, but I see it as a daily choice. Keeping my fingers crossed.

Everyday is a new day to put one foot in front of the other.

 

[Bernard]

Sounds like she is or was on the edge - flirting with the danger zone. It's a dance I've watched Stacy perform many times. I hope she recognizes it and makes good choices. Best wishes.

 

[epileric]

I know when I was her age I had to do the most dangerous thing I could & stop taking my meds just to be shown that I couldn't do that.

I honestly think it's something every kid has to do to define their limits (at least I hope every kid does, otherwise I"m just an odd-ball).

 

[Endless]

I agree with eric. kids need to push boundaries. it's part of the process.

I also think it has something to do with freedom and living a normal life. I have a friend with more screws in his body than I have in my dining room table. He's not allowed to do much of anything that's very physical. Yet he waterskis or goes climbing every weekend in the summer. Very dangerous for him. But he says it makes him feel alive. I think the day he quits pushing boundaries is the day he gives up who he is.

Not to equate that with eating patterns. But I bet Rebecca feels a little bit of exhileration and a little bit more like a normal kid when she bites into that twinkie. Hopefully it's not that often.

 

[maddiesmom]

Robin,

It took me a week to read this entire thread and its been fascinating. Kudos to you! I have been on a similar ride with my daughter who is 6, although she has quite a different background than your daughter. My neurologist/epileptologist actually told me, "I thought you were smarter than that" when I told him that we were doing cranial sacral therapy and going to a naturopath to treat my daughter's yeast overgrowth. Parents like you give me strength to stick with my plan. My DD is still having nocturnal seizures however. We are gluten and dairy free, taking b6 and cod liver oil. BUT I am about to have a new round of blood work done with our naturopath and our holistic neurologist because I believe the yeast is definitely contributing to her seizures. In the past year of trying, we have not yet found a way of defeating the yeast for good yet, but at the advice of my doctor, in the last two weeks I've decided to ditch the gluten free alternatives and just go with a low sugar whole foods diet. Well, I am now addicted to looking up nutritional information everytime I give my daughter a new food. In the past week my kids have had peas and kale and cabbage and asparagus and okra. Today in the car we had peas and almonds for a snack -- instead of gluten free cookies and pretzels and cookies and fruit which all just add to the yeast problem. So, there's a reason people tell you to eat your leafy green vegetables =- they are PACKED with magnesium and calcium and choline and b vitamins. All the things we are supplementing with to counter the glutamate and excitotoxins. Its exciting to discover these things that no doctor ever tells you and then make changes to make your kids stronger. Anyway, thankfully at 6 it is easy at this point to control the dietary changes, so here's to lots of green veggies! Thanks for your inspiration. I've learned a lot from this thread!

 

[RobinN]

I am glad that our story has given you inspiration.
Every day I read an article about how poor nutrition is causing a disorder or illness. Most of the time it is the refined foods, and high sugar foods. It just makes sense when you see the additional symptoms that many of us witness, that there is a connection.

For some people:
SAD diet + increase use of antibiotics and viral issues from increase in vaccines = increase in Yeast = poor GI health = symptoms (too many to list, but for us it was eczema, clearing of the throat, teeth decay, poor memory, seizures, blood sugar imbalance = poor absorption of nutrients = lack of energy for cells = neuro malfunction,
I have listed this in a linear fashion, however it isn't linear. It branches from certain issues, and then comes back to the main symptom for which we are here > seizures.

I think we are not too far off from what we see as issues. You daughter is just at a younger age to experience them. Your daughters body might just be more sensitive.

I am glad that you have found support in an alternative medical community. It took me a while to find this out, but thankfully I did. I would hate to have seen her take meds for 10 yrs and then not see a way back to the true issues.

The younger ages do help in seeing results. My daughter is seeing that her body reacts to a poor diet, and is being careful in making her own lunch to take to school, etc. There is hope, but I don't see a magic pill for the GI health. It is slow and steady... wins the race.

Take a look at the video I just found. I put it in the Library. Great info by a organic chemist, with a lot of nutritional information. It does solidify the info once again.

 

[RobinN]

Rebecca has been living the life of a 19 year old. A new job with interesting hours (anywhere from 5 am, to days that end at 11 pm), a full load as a freshman in college, a new boyfriend who lives in Hollywood of all places :/

Well she made it seizure free for 8 months, but this sensitive TOM she just told me she had a seizure last Friday. I am sure it is due to not following her nutrition plan (there are just guidelines, no real spelled out plan) and lack of sleep.

She also still gets extremely sick each month. Sick to her stomach, headache, body aches. Severe hormone reaction to ? - this I need to figure out.

Two steps forward ... one back ----> onward

 

[Bernard]

8 months is a pretty awesome.

 

[BuckeyeFan]

Sorry to hear about the relapse - but sure hope the forward steps continue to outnumber the backward ones.

 

[RobinN]

Thanks Guys!
We have a scheduled appointment with the Endocrinologist next week. Hope there are some new ideas to consider.

 

[Rae1889]

Any updates?

 

[hadley.laura]

Neurofeedback

Hopefully one day this will be put into the forum Hall of Fame, but for now I will just begin the story of Rebecca's experience with Neurofeedback.

We are going to the EEG Institute in Woodland Hills, CA. It is about an hour away from our house. Her first visit was yesterday, March 13, 2008. We arrived, and of course there was the paperwork to fill out. Then we had the pleasure to meet Sue Othmer, and were taken to her office. There Rebecca was asked quite an extensive number of questions about her background. When Rebecca couldn't answer, I filled in the blanks. That took about an hour. I personally learned new information about how Rebecca's history plays a part in the world of seizures.

Rebecca was then asked to do an evaluation test. I did not watch this portion. However, there was a glitch. She seemed to do fine on the pre-test but when the answers were given, Sue said it appeared as if Rebecca had answered backwards to each of the responses. This had to do with a visual pattern and Rebecca said she answered as she was asked. So perhaps there was a malfunction with the "software". This test needs to be given again as the Institute give the test again at the end of all the sessions by comparing the two tests.

The third part of our 2.5 hr visit was a session with the EEG equipment. I was allowed to sit in on this part of the process. Rebecca was hooked up with the wires attached to her head, and on the large screen in front of her she was asked what type of pictures she would enjoy looking at. She chose kids. So to begin with there were blue dots on the screen in even rows. A ball came on the screen, and Rebecca was instructed that when her brain waves were withing the range that was wanted the ball would move along the dots and reveal a square of the picture at a time. When all was going really well the ball would move quickly and appear to have a speed trail (not sure how to express that). It just looked faster. If the brain waves were not within range, the ball stopped completely.

Sue would ask Rebecca how she felt, and we had answers such as great, tired, this part of my head feels funny, etc. It was hard to tell from watching if the tiredness came from being tired, bored, being relaxed, etc. I am sure it will be more difficult at the end of the day when we come for future appts. Hopefully she can rest in the car on the way, and arrive a bit refreshed.

I learned and watched on the computer screen that Sue was monitoring, that she was working at very low frequencies. She explained that patients with seizures have extremely sensitive nervous systems.
I am sure I will understand the process more as we come for more sessions. It is a lot to take in the first day.

We then went back into Sue's office and talked about what we could expect at future appointments. How this could not only be targeted to balance out the seizure threshold, but could also target the speech and language area, as well as balance and focus for the athlete.

Rebecca seemed unimpressed with the appointment. I am not sure what she expected. We plan on doing two sessions a week, and bump up to more during spring break. It was suggested to do two in one day occasionally. So we are looking at doing one after school, and one on Saturday. We did not get one scheduled for this Saturday. Our 2nd appt is next Wednesday.

I was asked to watch and journal about changes/differences I see in sleep pattern, daily efforts, good/bad, easy/difficult... I hope to fill you all in as we move forward.

Hi Robyn, I am thinking of trying this Neurofeedback therapy in Australia but there are not many people (Drs especially) that are even thinking about this Neurotherapy therapy for Epilepsy.

I ended up with Complex Parcial Seisures 6 years ago after a bash in the head, I tryed drugs for 2 years then my hair started to fall out so I stopped. I have not had any medication for 1 year but I am going to have to do something soon as it is so hard not driving and having seisures monthly (at the same time of the every month). I am 49 and need my life back.

I live in Brisbane and have found only one person (a Behavioural Optometrist) who is using this treatment. She has only had limited training, aparently about 3 weeks training in America firstly (not sure when as yet), then she said she has yearly trips to America for extra training. She has not had the time to talk to me as yet.

I am just wondering how Rebecca went with her therapy and wether it is a 100% cure which is what I need. They are wanting me to start on Lamictal. but I am thinking of trying this Neeurofeedback only if it is 100%.

I would appreciate your advice and would like to know how Rebecca is now.

Thank you

Laura

 

[RobinN]

Rae - it is still recommended that Rebecca continue to work with makeing good nutritional choices. None of the doctors can help her with that. She is doing really well, and if we can say she only had one seizure this year, that will be such an incredible improvement that we can celebrate.

Hi Laura - I know Bernard has already responded on another thread and answered your question. I was having computer issues that made posting difficult, but I am back now.

Nothing is 100% . I actually would recommend working with nutrition proir to NFB, only because you need that in place in order for the brain to function at its optimum during NFB. I certainly would not rush into the therapy, without knowing more about the practitioner etc. At least with the nutrition you can begin today. Go natural.

You can read this thread to find out how Rebecca's therapy went. I claim it to be part of the reason that her seizures are controlled, yet if her food choices are not the best, she easily can slip back into an occcasional seizure. She is med free, and much healthier today than she was two years ago.

 

[RobinN]

Rebecca had another slight 20 sec. seizure yesterday, one hour before her period started.
This has happened multiple times, where it is directly connected to her hormonal cycle.

Now to find someone that can manage this, otherwise she has been doing great.
She remains med free.

We might give the bio-identical progesterone another go, since she is doing so well, this might be the one boost that give her the balance of hormones she needs. Going to discuss this on our next visit.

Good News - I just had my first medical evaluation since Rebecca began having seizures. I put all my energy in finding answers for her.
So today was my turn. So far so good. Next are the stack of referrals for testing.

 

[Endless]

Robin,

I am so glad you are taking time now to take care of yourself. So often caregivers put others first and themselves last, and their health can suffer. So far so good? That is GOOD news! Lots of specialists to see? Oh, gosh, are things okay for you? Are you feeling okay?

 

[Nakamova]

Hi Robin --

Thanks for the update. I always have my fingers-crossed for your daughter -- and for you! It must be so tough with her in college. I hope she is feeling okay after her seizure. And that the progesterone does the trick.

 

[Rae1889]

Aw, Sorry for the set back. That really sucks. Did you say it was 20 minutes long? Thats a long time!

 

[joan]

Hiya* Just checking in on ya* Im sorry for the set back But glad to hear she continues to do well.

Hope you are feeling better.

joan*