Update on Son's Neurofeedback, Lyme Disease & Homeschool Plans

Preface:

For days I have been thinking about what to post online and why, about this. What is the purpose? What is too much information and should I be sharing all this online?

The Purpose:

Some things I blog about are just for the heck of it, or for fun. If someone can use what I share, then good, I'm glad.

I am sharing this information about my son with hopes that it might help just one person at some point in the future.

To a lesser extent, what I share here will explain and justify our choices regarding the continuation of homeschooling and why we choose certain academic plans for this son. Those are all on-topic to this blog and it explains more of our family's journey. Although I don't owe any reader an explanation for why we do what we do, this new information sheds light on why we are making the choices we have made and about the changes we are making right now.

I don't think we have anything to hide and we have nothing to risk or lose so I'm sharing this information.

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This week we received the final results of our fourteen year old son's qEEG testing performed by a board certified neurofeedback therapist.

The results are that my son has evidence of brain injury which they feel is a direct result of his past Lyme Disease infections. This brain injury is not unlike what a person may experience after a concussion.

This came as a shock to me because this son has had many new tick bites over the years which all received swift treatment with 21 days of antibiotics (other than June 2011 in which his new pediatrician insisted to give only 10 days of medication which later I pushed to get more medication to equal 21 days). People (and doctors) who talk (and write) about Lyme Disease claim that early intervention is stage 1 Lyme which does not give neurological problems or long-lasting damage. My son's experience does not follow that, which is why I am so surprised and angry (and confused) right now. (Maybe a reader of this blog post would benefit from knowing that real life does not always mirror what the so-called Lyme experts say, such as in reality things happen that they say can't or won't happen.)

I surprised because a lot of these symptoms appeared after increasing my son's academic load this fall. At first I feared character trait flaws were the root cause so we buckled down with discussions and schedules and put in hard work.

That didn't work, and I saw signs of fatigue and over-exertion and struggles with learning. I saw distractabilty and mind drifting and lack of focus. So, then I startd to wonder if perhaps he had ADD but that it had not appeared in the past due to different homeschooling methods we'd used being more relaxed, that perhaps they masked some true parts of my son's nature.

I didn't go out looking for a diagosis related to Lyme Disease because according to his doctors his cases of Lyme were open and shut, easily treated cases with no lasting side effects of any kind.

The only reason we sought neurotherapy was because my husband knows a man who is part owner of a business who told him that neurofeedback can help ADD, ADHD, and other conditions. It was my husband who wanted to seek this consult.

The good news is that I'm told based on the qEEG, my son did not lose brain tissue (as some who are Lyme victims can). Also, that with neurofeedback, it was said, that his symptoms can be cured. I am holding onto hope as it is better than being negative and thinking the worst.

Of vital importance during this healing time from a "brain injury" is rest and sleep. Thus it makes sense to keep homeschooling if only for the reason of not having to wake up early to get to school on time, and being not burdened with hours of homework every night.

Secondarily homeschooling allows for a customized education plan that can work around medical conditions and medical treatments. We have more flexibility to get his neurofeedback treatment if we keep homeschooling. The treatment is brain-tiring and he literally falls asleep out of exhaustion on days he has the neurofeedback therapy. We have to work our lives around the treatments. Thanks to homeschooling, my son can take the time to go to the appointments and he has time to take a nap in the middle of the day. He also has freedom to lighten up his academic load during his healing process.

The qEEG shows very detailed information such as which areas of the brain are running at a deficit right now (to use general terms). Brain waves are measured. The results of my son's brain activity has produced various symptoms relating to behavior, energy level, sleep quality, thinking processes, and learning abilities. What I am being told are common symptoms related to that kind of brain activity are things that I have seen in real life that have caused struggles. In other words the test is showing a biological (neurological) basis for what I, and he, already knew was real.

I want to point out that some symptoms he has are often more commonly discussed as symptoms of other disorders. This proves that when it looks like a duck it is not always the duck that most people see, sometimes what really is the cause is a lesser known variety of duck.

For example:

My son has a few symptoms right now that are on the ADD checklist of symptoms. However the qEEG results did not show the kind of abnormal activity that would be in the left frontal lobe if a person truly had ADD. Never until this year did I even consider that my son had ADD or ADHD as before he just never had those symptoms. No one that knows my son has ever thought he was ADD or ADHD either, so it's not like I have been one of those "in denial of reality of what their kids are afflicted with" mothers.

My son has some symptoms on the dyslexia list but he does not have qEEG results consistent with a brain that has dyslexia. I was told he has some abnormality in areas that affect visual processing which is consistent with his past diagnosis of visual processing disorders as diagnosed by a behavioral optometrist.

Deficits or slowed brain wave activity shown on the qEEG will produce the symptoms he has which are negatively affecting his learning ability and also disrupting general daily life and/or disrupting family relations at home or causing strife regarding his learning with homeschooling.

The Plan

For three weeks in December we have decided, with my son's consent, to increase his treatments to three times a week instead of just two. The goal is to finish this up faster to heal faster, which is clinically possible, they say. This way, he can get on with a more typical academic load and also reap the other good rewards of a healed brain sooner rather than later.

We probably will continue that pace in January as well.

At present the revised treatment plan is at least 21 more neurofeedback treatments. The treatment is being tweaked to address the new issues seen on qEEG. Progress has to be evaluated as he goes along. In the best case scenario he'd be finished at the end of January.

A part of me is happy and relieved to know his struggles are not dyslexia based or ADD or ADHD based or any other learning disability that he was born with.

My son is and has always been very enthusiastic and cooperative about this. He wants success. He is also relieved to believe there is a reason for his struggle.

I am hopeful for this treatment. I am praying it works.

As you now know we have had a lot on our plate since this all began in the first week of October.  As if the long distance move was not enough, as if trying to sell our old house so we can get on with our new life here is not enough, if starting to homeschool high school was not enough, now we have been dealing with this.

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If you are wondering how the neurofeedback has gone so far, we have seen changes already. Our son's sleep patterns are more normal, he is going to sleep earlier and has no trouble falling asleep. Thus he is not staying up late reading books until past midnight. He is waking up earlier in the morning and we are on a more regular sleep/wake cycle. His moods are more even and there have been less blow-ups (formerly blamed on male puberty testosterone). He has more energy, even with being tired from the neurofeedback sessions on therapy days. He has been paying attention to his studies more. He is forgetting things less. I no longer have to tell him every step of what to do all day, he initiates things that he knows must be done (such as packing up and preparing to go to sport practice without me telling him the time and nagging him). He is able to stay on task with a longer attention span. He is remembering to do what people tell him (such as a deadlines his coach told him about).

I don't know a lot about neurofeedback but if you want to know more here is the site that does board certification. If you choose to have a consult with a neurofeedback therapist I would encourage you to find a board certified therapist by visiting this site.