Thursday, April 30, 2015

Our first Neurofeedback session.

All the brain mapping is done and everyone thinks my son is a good candidate for neurofeedback (NFB).  I am really at a loss to try to describe what it even is so I am going to recommend this 8 1/2 minute video to explain what it is.
what is neurofeedback (NFB)

I was told that many people are very exhausted after the first few sessions because of all the mental work involved.  I imagined actively and purposefully trying to move avatar's in a video game but have learned after this session that it is all passive.  You don't try to think and get something to move, as I thought but instead you sit there connected to an EEG with the wires on your head and just stare at the video game!  I can not explain how that works or helps and I hope the video can a little.  It is all happening on a sub conscious level, you see the reward spikes for when the brain does what the individually programmed game wants it to do.  The positive reinforcement is the release of dopamine (aka the happy feeling).  Here is a short 2 min video explaining this...Dopamine in the brain

This a video of a neurologist talking about NFB.  It is the doctor talking to medical students so a little more technical but very interesting.  neurologist that has 90% success rate with NFB. I was in tears after watching this for the first time....please help me spread the word and help so many people.

Thursday, April 9, 2015

The preliminaries of neurofeedback...

I  researched the different types of neurofeedback specifically for seizures (LENS, ILF, LORETA) and met with the doctor (PhD) that met my needs.  We went in for a 90 minute consultation and when I left I was so exhausted as if I had been tested in school all day!  The questions he asked were so hard and I had never been asked such details before...even though I am with my son 24/7 I did not know the answers to some of the questions!  After the consultation, he was hooked up to an EEG machine for about 20 minutes and we did such things as staring without blinking, eyes closed and relaxed and then just whatever he wanted to see the different electrical activity.  At this time, my son was doing pretty good and hadn't had a seizure in over 48 hours.  I was instructed to call and they would fit me in when he was at his worst so they could do another EEG and overlap them.  Well, I did and they got me write in.  The tech wasn't there yet so the doctor orchestrated him getting hooked up to EEG immediately so he would have the recording because he had a grand mal 20 minutes prior to arrival at his office.  The doctor sat there the whole watching as my son slept hooked up to the EEG.  He was talking with his tech who arrived at this time about the wave forms but I didn't understand the implications.  All along the doctor has been telling me he wants me to see the #1 pediatric neurologist that will have an answer at the Mayo Clinic but I didn't explain to him about my insurance debacle because I am trying to work it out.

So while my son  hooked up to EEG, they had me arouse him and documented time eyes open, he spoke, he smiled, ect.  Then they were done and I was called in to office while he was disconnected.  He had asked me to read a book called the The myth of autism. by Michael Goldberg during our last meeting and I promised him I would even though I didn't know how that would help and was a little offended that he might be trying to put another label on my son...but I promised.

OMG... did you know that roughly 35-40% of autistic children develop a seizure disorder?  The case studies in the book were eerily familiar a  typical child, hitting all the developmental milestones and then....BAM!!!!  The author of this book, Dr. Goldberg, is suggesting that this fucking nightmare is a virus that would not have been detected in ALL the blood and spinal fluid we had tested!  Get out of husband and I are medical professionals....I was an ER and ICU nurse and he is an anesthetist and gives people anesthesia.  I have researched for two years could this not have been suggested by someone else?!
The Myth of Autism

Ok...back to my day... I am in the doctor's office he tells me he is sending the videos and everything him I told him to his friend at the Mayo clinic...the pediatric neurologist.  He tells me there might be a fee but he doesn't think so and if there was it would be like an hourly fee an attorney  charges.  I didn't know you could consult doctor's like that instead of uprooting your whole life and family to go see the best of the best!  I am really feeling like an idiot...why didn't I know any of this...I worked with doctor's it a secret?!

Ok...really back to the doctor's office.  He sits me down and tells me he witnessed seizure activity on the EEG while my son was sleeping.  He tells me that he doesn't believe my son has epilepsy but his seizures are a symptom of an inflammatory process...maybe a virus, maybe autoimmune disorder?

I can not even process I am not going to analyse it right now.

As I wait for feedback from the Mayo clinic, my son will have another EEG when he is at  his absolute best...his "A" game so the doctor can overlap all of them.

To be continued...

Funny how things happen...

The Orlando neurologist was amazing.  I met with his team for 60  minutes and was questioned by all of them.  His whole team relocated with him from!  I left feeling very optimistic that this was a doctor that loved puzzles and that he was going to solve this.  He wants us to be admitted for 3 days for a SPECT, another MRI and video EEG.  I was very surprised by this...just one week ago we switched our health insurance (by choice) for lower monthly payments.  My husband has excellent benefits for himself but we have been paying high premiums for the family, so after months of research we found a great provider with a little higher deductible.

When I got home and Dr. Lee's staff called me to schedule they informed me that they were out of network and that I had a $12,000 individual deductible.  Anyone in the United States knows that would easily be reached if we were inpatient for the above tests.  Now if this was for a promising treatment, we would find the money but this was just for more tests!!!!  We made a difficult decision to hold off and research a new insurance policy and see what happens.

We still receive our Unani medicine from my good doctor but have progressed any further.  I am so grateful for his continuous support and optimism that everything will work out.  What an amazing experience to experience his culture.

I continued my extensive research on neurofeedback and this is what was meant to be!  I highly recommend reading the book...A Symphony in the brain by Jim Robbins.  I love the title instead of and "electrical storm" which I have read and been told too many times!!!  This book is all about the history of neurofeedback and are you ready for was first developed and studied on seizures!!!It never received government funding so the research didn't happen and it has been quietly in the background.  I bet if the pharmaceutical companies could make money on; you would have heard about it!

Symphony in the brain

After reading this book, I contacted over 30 providers of the different types of neurofeedback and told them my story.  I was overwhelmed at the responses from all of these providers and how they were trying to help provider offered to come out of new retirement if I couldn't find someone!  After weeks of corresponding with many people I chose someone that fit...and this is where the new story will begin.