Friday, September 18, 2015

It's been awhile...

We continue to do tCds treatments at home every day for 30 minutes.  We go into the office every 14 days or so to have a mapping and see if the electrodes need to be adjusted or moved to another location.  My son continues to improve leaps and bounds so we continue to follow the red dot.  The red dot is the hot spot that shows up on mapping or Qeeg.

His seizure activity has decreased dramatically and we are no longer on lock down and declining invitations during his "monthly" bad time.  He is learning in leaps and bounds and taking tennis lessons, climbing trees and riding his bide.  He did a little of these things before but he has gotten so much better with his balance and coordination.  He occasionally has Valium as needed but at such a lose dose and he can tell me sometimes when he is "twitching" and would like some.

We have had a few appointments with a local holistic doctor that has run a lot of blood work that would not ordinarily be drawn by mainstream physicians.  We had his titers form his past immunizations tested, ammonia, lyme and some other ones I never heard of.  We learned that his Vit D and iron are very low so he is receiving these supplements.

He still drools prior to his electrical activity picking up so I get a little notice to start watching things. He is not on any daily medications to suppress this and it has been a very reliable indicator.

Friday, June 26, 2015

Brain mapping after tCDS done

We have been having a great experience.  My son lost the ability somewhere along the journey to throw a ball.  It might not seem like a big deal to some but it was heartbreaking to have a catch with him because when he would release the ball; he had no control.  Sometimes it was released behind his head with the windup, other times mid air...you just never knew where the ball was going to go.  Last week we attempted to have a catch again and you know what...he threw the ball totally normal and hitting his mark.

Trying to teach him his schoolwork has been very exhaustive and a constant feeling for me of failure.  Last week; out of the blue...he started "getting things", as a mom I just knew something was happening.

He did not miss out on any of life these past few weeks!  The nighttime seizures slowly reemerged but he was 100% during the day and the two above mentioned milestones were still present!

Two nights ago, we had many overnight seizures an no sleep.  So when my son was awake for the next day; he was twitchy, non-verbal, and pacing without a clue as to what was going on around him.

This is the day I had my consultation for the brain mapping QEEG results!

I am being told that my son's results are AMAZING that he went from a spike of 5.5 standard deviation in frontal lobe to a 2.0 deviation (which is in the high normal range).  All of the hot spots which show up as red were gone.  The first one we had done looked like a toddler got a hold of a red crayon and went crazy :-(

As I was listening to all of this it was a little hard to get very excited given what my eyes were witnessing in front of me with my son pacing beside me.  I told my husband the results and we both smiled wearily at each other and tried to get my son to go to sleep...so that the family could reset and start anew.  My son eventually went to sleep with a little medicine and woke up the next morning, talking, laughing and learning!  Was this really over?????  We are usually in a yucky phase of varying degrees for 7-10 days!

Tuesday, June 9, 2015

tCDS treatment #4

Okay we have had 5 sessions where my son gets gooped up and two electrode packs are placed in specific locations on his head and then he wears a ski cap type of thing to hold them in place for 30 minutes.  He can sleep, watch tv or play his tablet whatever he wants to do.   The therapist had tried it  before and explained that there is a little tingling which might be irritating in the beginning but you then get used to it.  My son tries to itch a little but once he gets wrapped up in a show or video game it doesn't seem to bother him.  My doc greeted me yesterday very excited about a small study that was just published that week on this treatment to the same locations they are treating my son with wonderful results.

He was initially suppose to have six treatments of the tCDS followed by NFB but in light of this new study they want me to report each time how we are doing, if he continues to do wonderful like he is this week they will continue with tCDS and do another brain mapping after ten sessions!

Wednesday, June 3, 2015

Brain mapping results after 10 sessions

Things have been very challenging over here.   There is no longer any predictability as to what the day or night will be like.  We have had to use the low dose valium a little more often than usual for the nights :-(   The NFB definitely did something however I am sad to report that there were no significant changes in the Qeeg compared to when we started.  Dr. Bill has consulted again with Dr. Tatum at the Mayo clinic and as many readers know idiopathic (or unknown origin) baffles the medical community.  If they can crack this code so many thousands of cases will be helped.   During their consultation both doctors agreed that if you just look at the eeg and not my son's history or presentation; the eeg looks like brain injury (as if in a motor vehicle accident).  My son suffered no physical brain injury but the treatment for that is something called tCDS or Transcranial Direct Current Stimulation.

My son will receive 6 tCDS treatments to disperse the energy in a specific area of the brain in order to quiet it down and then follow with 4 NFB to retrain.  We will have another mapping after that and pray for positive results.  We can stop at any time and I appreciate all the professional favors that are being called in on our behalf.  I hope someone out there in cyber space finds this information educational and beneficial.  My message all along has been to never lose hope and never feel helpless.

NAMASTE

Monday, May 18, 2015

NFB #8

Between #6-#8, my son had a unexpected less than ideal day as I mentioned  and the next day was wonderful.  A pool play date and almost completely recovered....that has never happened over night!  It is usually a gradual daily improvement.  Then today started off less than ideal with overnight activity but besides being a little sleepy he is out swimming as I speak.

I explained what had happened to the therapist today and she reiterated that this was all a good sign that the brain is trying to find a new "normal" and that it is going to be a little crazy the next couple of weeks.  She advised I find a way (meditation, yoga, whatever) to find a way to be at peace and trust the process and not get anxious because my son will pick up on it.  

I told the family to prepare for some very unpredictable days ahead...we are up for the challenge!

I also asked my therapist to try and explain a little more about what happens during the game and this is what she said.  "When client watches the screen and produces desired brainwave activity the game moves forward and the music plays-brain gets rewarded (increase dopamine). When the brain is not producing desired brainwave activity game and music stop indicating to brain a lack of reward.  Brain is reward driven and can be taught to produce desired brain activity through this process."

We will have brain mapping at session #10...stay tuned!

Saturday, May 16, 2015

#7 Neurofeedback

Okay, we have had seven treatments, and my son loves to go and "play the game".  He wears a shower cap with battery like things sewn into it for 10 minutes to stimulate...I think...I will clarify what that is for.  The techs have been wonderful providing a lot of supplemental information.  I think I am going to ask the lead therapist (master's level education) to provide a little description of what is happening...stay tuned for that.

After the shower cap thing  then he is connected to a 19 lead eeg where certain areas have been identified and programmed into the software to be targeted.  He gets to pick from about six different avatar's (spaceship, race car, robot, dolphin, and a few other things) then they get to pick a musical instrument (such as a piano, guitar, maybe others) to accompany the avatar. They get visual and auditory feedback while staring at the screen and getting the avatar to move.  It is a 20 minute session where they are actively engaged with this video game.

Now, for my observations...I am trying my best to objective.  I want so bad to see amazing things and report off the chart improvements but I was told I would not see them until around treatment 10 to start.  When he has had seizures since we started his "down" time or "bad" time has not been as intense.  That is the only thing I can say for sure.  Now as I write this, we are having an unexpected "bad time" that is not following his normal routine.  My son has somewhat of a predictable schedule since we weaned the medications and I can actually see all of him :-)  I sent the Doc Bill an email when I woke up, even though I know  he is out of town at his daughter's graduation and he responded within 30 minutes with this response...As I run off to my daughter’s graduation, may I take 30 seconds to tell you that, indeed, this is (an admittedly paradoxical) favorable prognostic sign.

Nothing to worry about - if it’s as I expect, we are breaking his cycle!

Every one of my questions are answered, emails answered promptly, phone calls have returned almost instantly by staff.  I am so happy with this provider.  It is too soon to say how successful we will be but I expect wonderful things in the future.  They are located in Tampa, Florida and if you can get there.  I highly recommend the services at ABF behavioral health


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 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...

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 Cincinnati...wow!  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 this...it 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 me...one 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.

Tuesday, March 3, 2015

New neurologist appointment

About a month ago, my Unani doctor found a courier for us and we have been back on the good stuff and loving life!  This is the best my son has been since this started; full steam ahead!


Next week we see a new pediatric neurologist; the one mentioned earlier that has treated children with a certain disorder with the nicotine patch.  Anyone that prescribes a nicotine patch to a child; has to think outside the box, right?

I also started investigating neurofeedback and it is quite exciting.