Tuesday, January 22, 2013

Neurofeedback Round Two

Fifteen months ago my older son began a round of neurofeedback therapy that lasted four months and totaled nearly 40 visits. He also had a QEEG brain map performed to aid in the customized treatment planning.

With new symptoms that began in August 2013, we decided after months of deliberations, to do another QEEG brain map to assess the situation. The three areas that were worked in 2011-2012 all showed improved an at normal levels (within one standard deviation from normal or at normal). However there are new changes in different areas and signs of current damage from a concussion from a recent minor head injury. (Apparently new findings are that concussion damage can occur from much smaller injuries than we previously thought.)

So we have begun another round of neurofeedback for our son as of last week. This basically is four hours door to door so a whole afternoon is spent each time. During treatment the brain is worked hard and is completely depleted of glucose, making the patient tired and sometimes he falls asleep immediately. To prevent this extreme fatigue, the therapist and I are trying to encourage my son to eat protein before and immediately after the treatment (he does not always comply). The treatment also leaves my son impaired for the rest of the day, with an inability to read, concentrate, memorize, or do math or other higher level thinking skills.

Thus we have had to change our family's schedule which changes how my younger son can be homeschooled by me, as well as of course, having to change the academic plans for my older son. My son cannot do lessons or class homework at night on those two days, for example. Since this treatment will probably take 35-40 visits spread over 18-20 weeks, the changes will be in effect through June.

This changes everything. My older son and I have talked and brainstormed ways he can still get learning accomplished given the restrictions and his continued participation in a varsity sport and with the robotics team. We have added listening to literature on audio CD in the car while driving around. I probably will add listening to some college courses from The Teaching Company next. Although it's not optimal due to bright sunlight in the Texas daytime, he could watch documentaries on DVD on the small TV screens in the car. I have added in more watching of documentaries at home, since he can only accomplish so much text reading in a day, in order to get good content into his head in a method other than reading books or textbooks. We watch as a family and discuss them, so I know he is not goofing off or bluffing about having watched them. He still resists doing schoolwork on weeknights after sports and dinner and he resists doing anything but chemistry class homework on weekends, two things I would like him to do.

My son does not want to stay back a grade but I fear not enough is being done during treatment times as well as last year when he had four months of treatment (two and three times a week). I have discussed this with my husband and he feels we should not make a declaration on the grade level and see what happens going forward. If my son commits to learning extra over the summer or doubling down next year and the next he may be able to pull off graduating in June 2015 as he had hoped.

I continue to try to not stress over homeschooling and to not feel anxiety about the situation of what should be getting done versus what is getting done. It takes a lot of effort for me to let go and just let things flow. I had a long talk with a homeschool mom friend on the phone and she made a good point that it is best to let teens go through this slacker phase (which mine is in plus he is having the health challenges) and let them take the reigns of responsibility for their own education rather than continue to try to have me force the situation. She had those worries about two teens who slacked in grade nine and ten then wound up waking up in their junior year and really cracking the books after that, and both are succeeding in college now.

I keep telling myself that my son's health is the first and foremost priority right now. If I were to give up on homeschooling out of anxiety over his home education not being good enough, and to enroll him into school, he would not be able to get the neurofeedback care he needs due to the conflict with the school hours and the office hours of the practice. He would not be able to do homework on those nights either. Homeschooling is best for him right now. Perhaps most important is he is asking and begging to continue homeschooling.

Now that I know he is having some true neurological brain-based medical problems I can stop blaming his struggles on slacking, laziness, lack of motivation, a bad attitude or bad character traits, puberty, thinking about his girlfriend, addiction to this or that video game played online, Facebook, or (fill in the blank). Knowing something is truly going on medically that is causing these problems actually took some weight off of my shoulders. (The symptoms we see in real life are symptoms of people having two or three standard deviations from the norm in those areas of the brain).

I am confident this neurofeedback therapy will help him. I am grateful we can afford this out of pocket expense. Whatever changes we have to make, such as not taking vacations, not going back East to visit family, not throwing a 50th birthday party for my husband, or reducing the number of times we eat at restaurants are just some of the things that we'll have to do to in order to provide our son with the care that will help him.


Lyme Disease is still being blamed as the root cause of these neurological problems (except for the concussion) but the cause is irrelevant, the treatment is the same no matter what caused it.

We are still investigating a possible food allergy or allergies or intolerances as well as hypoglycemia, all of which can cause issues with attention span, focus, and lack of clear thinking aka "brain fog".

Learning Disabilities

Symptoms experienced while having these abormalities can wind up being labeled as learning disabilities. People can have an LD label while not knowing the cause or not knowing that some of the reasons the cause of the symptoms can be cured with neurofeedback.


Karen said...

(HUGS) What alot to learn and what a journey!

Wishing you well, Karen

John Cammack said...

The Zengar Neurofeedback system helped me cure my Lyme fog. The company now has a home system,

Jerry said...

I am truly impressed by everything you are accomplishing and managing. It is complicated to juggle all of these things. I have a few comments that I hope will be helpful in your courageous endeavor to raise your son.

1. The NFB sessions may be too lengthy. How long are they and of what type?

2. I totally concur with ingestion of protein prior and post, but would add a half liter of water prior and post and a slow burning carb, i.e. something low on the glycemic index that is not protein to provide slow sugar release and not cause fluctuations in insulin which may also be exhausting your son.

3. Whatever you do in this situation do not do home training. Concussions are notorious for being tricky and it sounds like you have a good practitioner. TBIs should be monitored with Z scores/QEEGs.

4. A form of home training you can do is CAPTAINS LOG which is a cognitive rehab software for professional and home use. You can lease it for about 400+ dollars a year. Discuss with your provider. www.braintrain.com.

Best of Luck,
Gerald Gluck, Ph.D., LMFT
BCN Senior Fellow

ChristineMM said...

1. The actual time doing NF is about 40 minutes not including set up and break down. They are done in office by a board certified NF counselor who is also a psychologist and psychotherapist.

2. Thank you. Maybe sweet potato. However this is my very picky eater who we have food battles with. He loves refined white wheat products and sugar. I know a lot about nutrition and he is fighting against anything I say.

3. Thank you I would never do home training or internet training or any automated software program.

4. I would never use a home training program. I do not want to accidentially train down my son's "abnormal" high cognitive abilities. High cogntive ability, I am told, can accidentially be trained down to the norm if using a software program.

Jerry said...

Hi CHristine,
Captains Log is not neurofeedback training. It is cognitive retraining esp designed for TBIs and it has progressively harder and harder levels. It is absolutely safe and an adjunct not competitive with NFB nor can it dull cognitive skills or levels. At worst it will do nothing.

LIke I said it sounds like you have a good provider, but 40 minutes is a bit long even for an adult. I know several providers in Texas most of whom are excellent. Most of my adult patients can tolerate 25-30 minutes max and some less. One way to empirically test this, i.e. fatigue level, is to look at the various scores in five minute segments. Most training software have provisions for that, but not all. I often see signs of fatigue in the last minutes of training, ie it is not unusual.

Sounds like you have a really good provider and I wish you and him or her best of luck. I admire your organization and good judgment!

Dr. Gluck