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 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 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.