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 here...my 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 straight...how 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 everyday...is 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 this...so 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...

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