Thursday 7/26/2012

TRex's appointment was at 940 so he had his deviled eggs around 8.  His therapist was Ms. Charity.  This was the 4th session in the protocol.  The session itself was uneventful.  Charity made the increased the difficulty so TRex was in the 75% reward range.  An electrode was off for a couple of minutes but Dr. Ray said his training effectivity was high.  He explained further that they like to see the variance in brain waves to "normal" to decrease throughout the protocol which is what is happening.  The next session is his last in this protocol.  He also said that the last protocol should help with gross motor skills/balance.  I think we will need to try the bike without training wheels at that time.

Wednesday July 25

Today is not a training session day.  I love it.  TRex wanted to get on my computer this morning and knows to turn the power button on for the power strip but does not know where the computer start button is.  He is normally on the computer in the front.  Anyway he tells me "Momma, your computer is having issues."  I love his use of language!

I came home in the morning to make food for me to eat at work.  He was on the iPAD on my facebook account saying "Momma where are Leighton's pictures."  Awesome!!!

Tuesday July 24

TRex ate a deviled egg an hour before our 935 appointment with Lindsay.  The screen appeared to be dark a lot of the time.  However, she said he did excellent with the training as she increased the difficulty and he was in the 70% reward zone.

TRex had a play date with Cyrus and then went to karate.  Since he tested for his yellow belt on Friday, I moved him to the next class.  I love that the students were much more focused which of course help TRex focus.

Friday 07/20/2012

Today is not a neurofeedback day but there were some really significant milestones.  We have been doing an alphabet review all summer.  Basically 2 days a letter for 6 days out of the week.  We are on Letter U today and will finish it up tomorrow.  TRex pretty much has them down now and can do them in scale – capital vs lower case.  He had a play date with Cyrus…and it went really well.  Leila said that she could hear them conversing and she heard TRex stand up to Cyrus and tell him no and to stop.  This is a huge milestone which I think will help his social interaction at school.  She and Cyrus dropped him off at the house and both he and Cyrus did the memory verses together.  Peer pressure of each other’s company is very good for both of them and encourages each to do better.

Also Leila commented on TRex concentrating on a specific task for 10 minutes…the same as Cyrus.  They made boats out of shoe boxes.

Wednesday 07/18/2012

TRex had breakfast an 2 hours before our 950 appointment.  It was the second  session in the 5 protocol session.  He had Ms. Lindsay again and she played the second half of the Barney Christmas DVD.  TRex watched it but fidgeted a little at the end.  Dr. Walker said that he had a 70% reward which means that his brain produced the desired waves 70% of the time.    He explained that the training targets in the 65-85% reward range.  Below 65% means that the brain isn’t responding well and that protocol won’t be very effective.  85% means that the brain is at the optimum point and further training is usesless.  Typically the earlier sessions in the protocol are lower on the scale.  The 5^th training session should have the highest reward but of course the difficulty is increased to maximize the brain training.

TRex finished the memory verses tonight.  His memory is incredible.  I can’t remember the verses.

At the beginning of the training session, the therapist attaches electrodes to the area of the brain that will be worked.  It isn't painful and is easy for her to clean after the session.

This is a typical training session.  The electrodes are already attached and TRex is watching the DVD.  The electrodes monitor his brain activity.  The screen is darkened when his brain doesn't make the desired brain wave and is lightened when it does.  All that is required is that the patient sit and pay attention to the screen.  TRex loves his Barney.

Tuesday 07/17/2012

Today is not a neurofeedback day so I generally work in the office.  I called the house from my office to say hi to TRex.  I asked him what he is doing and he said:

“Watching poppa's bandage is changed”.

OMG.  Then I said, “What letter is today?” and he said “I already told you”.

I said “I don’t remember.”  Then he said “It’s “S””.  Then I told him to be good with Poppa and M’Dear.  His response was “Bye momma”.  Up until this point, most of our conversations have been saying Yes and No and other familiar phrases.  He also usually answers “Fine” to “What are you doing”.  Unbelieveable.

I expect to finish his memory verses tonight.  Unbelieveable.

Monday 07/16/2012

TRex had breakfast an 2 hours before our 1025 appointment.  On the way to Dr. Walker’s this morning, TRex looked at me and said “Momma where is my DVD”.  Holy cow on that one!  He reminded me to bring something.  How about that?

He had Ms. Lindsay again today.  We had the first session of the second training protocol.  Evidently the first session is always a little difficult – classified as inconclusive.  After the first protocol, I don’t question the meaning any more. 

We met with Dr. Walker after the session.  I am recognizing a pattern WTF NAS pattern with the Dr. Walker consultations, Dr. Walker does the NAS at the beginning of the protocol.  There are a total of five training sessions per protocol.  Therefore, duh, there should be 5 if training goes well.

According to the therapist, the training session went well today so that section of the brain responds well.  Typically the therapist will proceed instead of switching to a different area if this area was not responding.

I have been noticing comments/observations concerning TRex’s progress.  Below are a few:

TRex went to Cyrus's 5th birthday party in January.  His mom has finally told me that Cyrus admitted he couldn't understand TRex most of the time.  They had a play date on this past Friday….and guess what…Cyrus had no difficulty understanding TRex.

TRex went to Wal-Mart with my mom who was trying to hurry him back.  He turned around and told her “Keep your hands off me” which she was startled.  Next time she won't let him get away with it but was impressed by his use of language.

He told me this weekend....”Momma I can speak.”  I think his frustration level is down and he loves being able to communicate.

TRex’s Sunday school teachers have sent home a memory verse of the week.  There will be a total of 30.  This week was verse number 28.  I didn’t work with him on them since he already had a weekly memory verse for PCA.  Fast forward to 3 weeks ago, I received a letter saying the Sunday school teachers saying that the class is going to do recite for the whole church mid-August…and TRex didn’t know a single one.  I have had 4 learning sessions with him and a couple of repeats.  TRex already knows 23 out of the 30. Basically he is memorizing 5 at a time.  My old brain can’t remember the verses.  We will finish all 30 this week.

Thursday 07/12/2012

TRex had breakfast an hour before our 935.  TRex had Mr. Bill for therapy today and did well.  He watched the Barney Christmas DVD and paid attention for the most part.  He did fidget towards the last 5 minutes.  Dr. Rey said he trained well and that the next session would start in another area.  This one will be primarily focused on visual processing…Interesting.

Tuesday 07/10/2012

TRex had two deviled eggs two before our 935.  I had received the Copy of Barney Night Before Christmas Saturday that I had ordered from Amazon.  This is TRex’s favorite DVD and he wanted to watch it but I told him he has to wait until he is at Dr. Walker’s office.  We had Ms. Lindsey again today and she played the dvd.  TRex barely fidgeted.  I only had to say something twice.  Amazing.  And she had made the training more difficult.  Only one more training session in this spot then on to the next one.

Currently TRex knows 50 different words plus names. We use powerpoint to help/motivate him on different words so I had been working with him on knowing his numbers spelled up. We had gotten up to 15 a couple of weeks ago. I started the site words up again last night and flashed up sixteen and he said he didn't know it. I asked what is the first part - and he said six, then he looked at the second part and said momma it's sixteen...Amazing stuff.

Thursday 07/05/2012

TRex had an egg* two hours before our 935.  I am just going to admit up front that yes I bribed my child.  We talked about that he wanted to see Dr. Walker.  I told him if he sat and watched the movie I would give him a present.  We had Ms. Lindsey today.  I believe TRex likes her.  She put on Barney’s House DVD and TRex sat there and hardly squirmed.  I think I only had to tell him something 5 times at the end which is amazing considering the other two times it was much much more.  He did so well that she increased the difficulty.  We met with Dr. Ray afterwards who also commented on how well he is doing.  Margi came over and took TRex with her today so I can work.  I can’t wait to see how he does on his letters tonight and we are also going to do memory verses.

*Several people have asked why I record what he ate before going.  It is my way of noting that he did have a good breakfast so that he will be prepared to pay attention.  This is similar to making sure he eats before going to school so that he can focus and learn.

Tuesday 07/03/2012

TRex had an egg two hours before our 940 am session.  We had a female technician, Ms. Charity, and she did play the Barney DVD.  TRex did better overall but he still fidgeted.  She had challenged him to see if he could sit still for 20 minutes and of course he couldn’t.  The last 7 minutes was really a challenge.  But they did give me a statistic.  TRex focused 62% of the time….so I would say it went better. 

The Dr. Walker did that stupid “New Age” Schadenfreude – which we will just refer to as NAS from here on out.  He asked will one more treatment be needed, then two, then three, then four and that is when the old arm went down….geez.  Wow??? I guess we are having 4 more sessions at this protocol before moving on.  I would have been better if he had just came out and said I think we need 4 more sessions at this protocol before moving on.

I find it interesting that TRex has been tired after both sessions.  Talking with Margi, she said Mike was tired after each session so maybe that is working?  We went to a Vietnamese place for lunch and TRex concentrated enough that he was able to pick up bean sprouts with chop sticks.  And holy cow.  Look at his Mm’s this afternoon.  I am eagerly anticipating session 3 even if I have to put up with Wow NAS.

Saturday 6/30/2012

Neurofeedback Session 1 - TRex had his first neurofeedback session today at 115 pm.  The waiting room was full when Dad, TRex, and I arrived.  Moments like this make me reflect on how truly lucky and blessed we are.  A dad was there with his three kids and recognized a mom who had her son. 

The dad’s 9 year old son had not been talking until recently.  They use neurofeedback and light therapy which he claims has helped immensely.  Also said his son was recently potty trained.  The mom’s 4.5 year old son started having seizures at 8 months.  Last year his doctor’s thought he was going to die after a month long seizure.  She said she was very thankful for the neurofeedback.

We encountered a couple of kids from his karate class on the way into the therapy room.  I am looking forward to Monday so I can talk to their mom to compare notes.  I suspect that the daughter has autism.

TRex’s therapist today was Mr. Bill.  TRex didn’t object to having the electrodes attached as Mr. Bill was explaining the procedure to him.  As TRex’s brain produces the desired brain function the pac-man game operated.  But when he didn’t, the game stopped and turned blue.  Mr. Bill later started up a DVD of robots dancing.  TRex fidgeted a lot because I suspect he got bored.  Mr. Bill said I could bring in a DVD for TRex to watch next time.  I wish I had known that would be helpful because I would have brought one this time.  Both dad and I kept telling him to focus on the screen which of course led to more fidgeting.

Mr. Bill said that TRex’s brain trained well for the first 7 minutes but then he probably got bored which is when he switched over to the video.  TRex again got bored and then it was a fidget fest.  However, Mr. Bill said that this is normal for the first session.

We met with Dr. Walker directly after and asked about the data on the sheet I fill out at the beginning of the session.  The sheet asks about the patients current state with questions such as “How many hours of sleep did you have the previous night”, “What is your energy level”, and “when was the last time you ate sugar”.

Dr. Walker said the training was “inconclusive” which is normal for the first session but didn’t give much feedback. 

Later, Ms. Melisa came over to play with TRex and swim.  She had been to therapy sessions with Mike when he started and said that this was very similar to how his sessions started.  She said that the effect is starting to be noticeable after the 3^rd one.  This gives me a lot of hope.  I can’t wait to see how he is Thursday.

Friday 6/29/2012

QEEG results day – The appointment time has finally arrived.  I have been on pins and needles anxiously awaiting the results.  All of the different scenarios have been circling in my brain.  What if the QEEG found nothing?  What if the QEEG found something really bad?  The meeting was with Dr. Walker who sat between my dad and me with the computer printouts.  He took his time to explain in detail the theory behind the output plots and what they mean.  Basically the brainwave activity at different frequencies is measured and normalized via a sinusoidal wave plot and then compared with brainwave activity of a “normal” person of the same age – in this case a “normal” 5 year old.  Finally, the doctor had documented some scientific evidence that is repeatable and thankfully matched the symptoms that TRex has been exhibiting.  The plots indicated TRex does have an attention deficit issue and some social interaction/isolation issues, which Dr. Walker said is very treatable.  The treatment plan is 25 thirty minute neurofeedback sessions to treat the 10 areas of concern.  Unfortunately insurance will only cover two sessions a week.  Therefore, TRex will have the two sessions a week starting the next day and the treatment will run 5 weeks into the school session.

Tuesday 6/12/2012

Consultation – I had called to make an appointment with Dr. Walker after much urging from my BFF.  Her son, born in 2000, had issues with school and had been put on medication for ADHD.  She did not like the medications side effects and sought out an alternative treatment.  At the time, the details did not sink into my consciousness because I didn’t have to directly deal with the effects.  Of course I want him to do as well as possible, but I just didn’t get it.  Flash forward to today, and with TRex’s symptoms heck yeah I am paying attention.

At this point I would have to say I am feeling several different emotions.  First I am having a little trouble believing in the process as it has a “new age” feel to me.  Part of the skepticism comes from the evaluation.  Dr. Walker told TRex to hold his arm out while Dr. Walker pressed on different parts of his head.  The “theory” was that TRex’s arm would go down when there was an area that might have a problem.  Well TRex was having none of that and kept putting his arm down.  So Dr. Walker had me put one arm on TRex’s shoulder and hold the other arm out.  And he used my arm movement as an indicator.  I can tell you right now I think that is a bunch of hogwash. I would have had a much better feeling about this process if this step had been omitted.

Prologue
I first understood that TRex had a speech issue after being approached about the subject by his Pre-K3 teacher.  Up until that point, I had thought everything was fine.  I just didn't have the experience to know different.  TRex has gone through 1-1/2 years of speech therapy as well as pre-K3/4 in the Richardson PPCD program.  His speech has vastly improved.  When he started the program, he sounded like he was speaking a foreign language.  He had the cadence like he was conversing, but I could only understand every third or fourth word.  Richardson's initial assessment was that TRex might be on the ASD scale.  This was devastatingly difficult to hear.  All I could think about was how to make things right for TRex.  Had I done something to cause it?  Even writing these words make me want to cry.

Anyway, TRex completed the Richardson program and met all of the developmental milestones.  They released him to public school general population kindergarten.  However, I was still very concerned.  I see him with other children his age, "normal" children, and I can see the difference.  He isn't able to participate fully because of the language delay which means that he is socially isolated.  Totally breaks my heart.  So this is my blog for TRex.  I hope it helps other mothers. 

I would like to thank my BFF from the bottom of my heart.  I don't know what I would have done without her.  She is the one who brought neurofeedback and its benefits to my attention.