Neurofeedback for Luke

I’m not even sure where to begin on this subject…

EMOTIONS

Luke tends to be quite emotional and always has been. He’s always struggled with frustration and anger issues but he’s also quick to feel the Spirit, always wants to be happy and is remorseful and loving. He just feels ALL KINDS of emotions DEEPLY. Since he’s struggled with this ever since he was a toddler I was just kind of waiting for him to ‘grow out of it’ and that maturity would ‘settle him down’ a little bit.

TICS

Luke’s tics started at the end of his 2nd grade year. It first started with an eye movement and raising of the forehead that I noticed when he was at the kitchen table doing homework each afternoon. I took him to the eye doctor and while they didn’t see anything wrong with his eyes, they gave him glasses to help with the transition between focusing on near and far — which is what they figured he struggled with. Not really so. It was only after three consecutive tics in different areas that we realized what this was. He seemed to have several tics at a time — some quite noticeable and others not very noticeable to others. Although most of our close adult friends had no idea that he had tics, one of the girls in his 2nd grade class told him that if he didn’t stop ‘moving like that’ she was going to punch him at recess. He didn’t stop and she did punch him. This is when we started to become even more worried about what he was dealing with.

After talking to Tiffany about another boy with tics AND volatile emotions I was made aware of Neurotherapy with Chris Edwards. I remember this conversation being pretty eye-opening and definitely felt like it was a tender mercy that shed some light on both of these issues and possible treatment. (End of his 3rd Grade year)

After several emotional explosive situations over the summer that we had to take quite seriously, we decided to make an appointment. (End of his 4th Grade year)

PRELIMINARY EVALUATIONS

I had an initial appointment with Chris Edwards where I shared concerns, symptoms and patterns. He asked me a lot of questions and I gave a lot of answers.

October 24th Chris referred me to Steven Stockdale Ph.D. for a brain scan. Dr. Stockdale placed a cap over his head and then attached some wires to make an electrical connection to different parts of the brain. Luke had to remain very still with his eyes open while focusing on one thing for 10 minutes as the wires recorded brain activity. Then he did it for another 10 minutes with his eyes closed.

November 14th Chris and I then met with Chris Edwards again and he carefully went over all of the scans. I was so glad that Chris was there since he understood everything so quickly. He explained about standard deviation and that he was looking for anomalies in the brain that were 2.8 standard deviations from the norm. Those areas were highlighted with a certain degrees of color. Even without having met Luke he looked at his scans and was able to tell me some of his characteristics based on the scans — He explained that his brain was making too much of something here and not enough of something there. He unofficially gave him a mixed diagnosis — something that would be similar to having ADHD and ADD at the same time.

December 6th Our third meeting with Chris Edwards was Luke’s first appointment. They wanted Luke to describe everything that he was feeling, thinking, frustrated with, anxious about, loved and dealt with. They asked so many questions and although there wasn’t anything that Luke said that I didn’t already know, I still found myself emotional hearing him talk about everything he faced all in one sitting. This poor boy is dealing with a lot.

December 18 A Sleep Aid appointment

HEART MATH

We decided that we would begin Neurotherapy treatment after our trip to Thailand and Cambodia (last two weeks in January) since we would need several months of two visits a week without missing any appointments, but we did a series of HEART MATH appointments with Alexa in January. HEART MATH is an Inner Balance App and Sensor which helps activate Coherence — an optimal physiological state where the heart, mind and emotions align in cooperation and harmony. “Based on over 300 academic papers and recommended by health professionals worldwide, a few minutes of coherence practice has been shown to reduce stress, increase energy and resilience, and improve mental clarity and performance.” This practice (10 minutes every day) is designed to help Luke learn specific techniques to calm down, and help with anxiety and stress. He did very well at first and was able to get very high scores.

Journaled notes before Neuro

  • Feb 2 - I was in Thailand for two weeks in January. Luke has been consistent with his heart math , but has been getting frustrated that his scores aren’t consistently high and feels like “what’s the point of this? It just makes me mad”. Luke struggles with a little bit of perfectionism and competitiveness so it’s not surprising. When we told him to think of things he was grateful for, it seemed to help.  Hardly any frustrations while we were gone. He seems to be quite mature about the process about getting all of this understood and fixed.

NEUROFEEDBACK

We did neurotherapy twice a week for four months… February through the end of May, with Alexa and sometimes with Chris Edwards. Neurofeedback refers to specific areas of the brain being hooked up to the computer and playing a ‘game’ of sorts which rewards the brain for sending out the right levels. The brain then learns to ‘do it again’ based on the feedback (special sound) that it receives over and over again. Neurofeedback over and over again reprograms the brain to make more or less of something in each area.

Journaled notes during Neuro

  • Feb20 - Hard to be consistent with heart math over the weekend with ski weekend. Luke has had quite a few frustrations this last week. Dad seemed to be less patient. Luke has a hard time seeing Matt not following rules like Luke thinks they should be followed. It’s definitely a big trigger.

  • Feb 22 - Luke is doing short heart math times (7 minutes) still in level one.  I think he’s bored. We talked about moving it up to 10 minutes again.  He tried to have liquid medicine and couldn’t swallow it. He tried to drink a third of it and ended up gagging and throwing it up again all over the kitchen floor. I got pretty mad — mostly becauseI know he needs to be taking multi vitamin pills now and he can’t swallow them. We’ll see. We ended up resolving it and praying together. 

It’s called ‘Neurotherapy’ because along with the actual neurofeedback Alexa did some counseling, talked about health supplements, inquired and gave suggestions about sleep and more. I think Luke really liked meeting with Alexa and felt comfortable talking about what he was going through. The communication was an important part for Luke. It seemed like was really powerful to have that initial hour long meeting with Chris Edwards and then subsequent Neuro session with Alexa to help unravel what he was feeling.

LUKE’S HAPPY PLACE

One day Luke’s Neuro theropist, Lexa asked him to picture a place where he felt calm and relaxed. I think she was going for ‘hammock on the beach with the waves crashing behind you’ type of scene or maybe that’s just my happy place. Luke thought about it for awhile and then said ‘I don’t know’. She prodded him a little further and then he said ‘well, I’m not sure if this is what you mean but — ‘when I’m doing Math’. Visibly Off guard, Lexa said “ Well, how do you feel when you’re doing Math?”  Luke responded that he feels in control , calm and like he knows what’s going on.  Lexa nodded her head and said ‘ok, doing Math’. Love it. It made me laugh. 

A TENDER MERCY

Now that you understand that Math is Luke’s ‘happy place’...

As we were waiting in the waiting room for Luke’s most recent Neuro therapy appointment, he turned to me and said “ It’s too bad that I’m missing math every time I’m here. Why couldn’t I miss reading or social studies.” Luke is scheduled for Neuro feedback appointments on Mondays and Fridays at 11 o’clock - for the next 15 weeks at least. It’s an hour to an hour and a half appointment and it’s 30 minutes from home. He misses a lot of school, but it’s mostly math and lunch. We didn’t choose the 11 o’clock time slot. It’s seem to be what they had available and what also worked for us and so we settled into that schedule.  When Luke made that comment today I turned to him and said “Luke, that’s actually a great thing for you to be missing. You are amazing at math. It’s much easier for you to make up math assignments than reading or social studies. That’s a real blessing!” He nodded in surprise and agreement. Then Luke said, “Actually Mrs. Naman doesn’t even give me math homework because she knows I already know it.” That’s when I nodded in surprise and then was filled with gratitude.  Last year at School In The woods Luke had an amazing and perceptive math teacher who could tell that Luke was gifted in math and decided to work with him in completing all of fourth grade and all of fifth grade math in his fourth grade year. She recognized some of Luke’s difficulties in distractibility and focus and yet helped him because she could see his natural ability. She was amazing — and to think about that again, now aware of all the math classes he’ll be missing, I’m overwhelmed and grateful for how heavenly father has lined up these details for his benefit.  Truly a tender mercy. 

TEAM LUKE

At some point I created a chart so that we could keep track of everything Luke was supposed to be doing… it was definitely overwhelming and all consuming. I named the chart TEAM LUKE hoping that everyone could jump on board and help Luke with everything he needed to be doing and monitoring. The charts seemed to change on a weekly basis depending on what we added or wanted to track. It definitely helped.

  • Sleep Quality

  • Drinking Water

  • GABA

  • No Gluten

  • Fish Oil

  • Multivitamin

  • Magnesium

  • Heart Math

  • More GABA

  • No Video Games

  • GI Stuff

  • Tics

  • Emotion

  • Early to Bed

GLUTEN FREE - DAIRY FREE DIET

During one of our few Neuro sessions with Chris Edwards he seemed to notice some things about Luke that made him curious. “Luke, how are you feeling bud?” Luke answered with “I’m just tired and feeling kind of hot”. Chris responded with “Where do you feel hot?” which I thought was a pretty strange question. He answered with “I kind of feel hot in my hands” which I thought was a pretty strange answer. He and Chris began to talk about things and then while Luke went to the bathroom Chris asked me if Luke has stomach aches or bowel issues. I said that he has had some bowel issues and has spent a lot of time in the bathroom but I didn’t think it was currently a problem. When Luke got out of the bathroom then I asked him, “Luke, you aren’t having stomach aches or spend lots of time in the bathroom right now, do you?” “Um, every day, Mom” I was a little shocked.

Luke immediately went off Gluten and meanwhile Chris Edwards directed us to Denver from Apollo Medical to get Luke tested for sensitivities. As we approached our appointment, they told us he needed to go back on Gluten for at least 3 days before testing. Luke was excited to have pizza and sandwiches and everything else he had been missing for the previous 3 weeks but after eating it for the weekend he said it wasn’t worth it. His stomach aches returned and it was pretty apparent it was affecting him.

He got his blood taken — like SEVEN tubes of blood — and at the end was pretty weak and nauseous. Poor guy. Two weeks later Chris and I went back to review the tests. He was overwhelmingly sensitive to GLUTEN - so much so that he has been diagnosed with Celiac Disease. Check out Chris’ posts under the HEALTH tab for more information on Luke’s GLUTEN FREE DIET and CELIAC DISEASE.

This is just the beginning of the journey. Lots more things to work on and monitor as we go forward.

Lisa Johnson4Comment