I am (literally) writing this article during a car ride home from Dallas, TX. to where we live outside of Houston, TX.
We have just spent two days at the world-renowned PNP (PsychoNeuroPlasticity) Center in Dallas putting our 11-year old son who has been diagnosed with high-functioning Autism/ADHD, and our 12-year old son who has been diagnosed as Bipolar, through a series of complex (non-evasive) neurological assessments. Because multiple sources can impinge on brain function, broad integrative assessments (AKA lots of different tests) are used to help develop an individual treatment plan for each child.
The PNP Center was founded by Dr. Frank Lawlis and Dr. Barbara Peavey. If you ever watch the Dr. Phil show, chances are you have seen Dr. Lawlis on the show. He is on Dr. Phil’s Advisory Board and is often called in to help guests on the show figure out what is going on in their brain. He helps explain why extreme behaviors are occurring and often uncovers guests have been misdiagnosed.
What makes the center so unique is Dr. Lawlis and Dr. Peavey bring together experts in all fields related to neurological function so you can literally have every aspect of brain health examined in one place. Specialists in each area work together, constantly communicating throughout the two-day assessment, to analyze and diagnose. The entire process is fluid. No cookie-cutter testing whatsoever.
The staff was A-M-A-Z-I-N-G!
With that said, fair warning, for me this was 48 hours full of ‘big word’ information and life-changing results so I’m a bit all over the place in my thoughts.
When you find out everything you thought IS actually ISN’T, it totally ROCKS YOUR WORLD and jumbles your mind just a tad. As a result, I apologize if I seem to jump around in the words to come.
As Mental Health Parents, we do our very best day-in and day-out to make the most informed decisions based on the information given to us from our doctors and therapists.
For many of us, one of the most difficult decisions we make is whether or not to medicate our children. We are warned of potential side effects (short and long-term) but, in the end, are convinced it is the most effective way to manage the multiple symptoms of these massive disorders. The only way to provide them the best quality of life.
Desperate to help our children suffer as little as possible, we trust the doctor’s recommendations and drink the Kool-Aid so to speak. It is never an easy decision, but often a necessary one.
OR IS IT?
Here’s the thing. I’m a believer in Western medicine when appropriate. If properly diagnosed, I am convinced medications have their place and can prove to be invaluable.
The key words here are ‘properly diagnosed’.
Take ADD/ADHD for example. It seems like every other kid on the planet has one or the other. It has become as common as the common cold.
When a child goes to a Psychiatrist with potential ADD/ADHD symptoms, the parent is given a simple questionnaire and the Psychiatrist observes your child for all of ten minutes and…BOOM!…they are diagnosed with ADD/ADHD and given a prescription for a medication that is classified as a narcotic.
Now for my children, the Autism and Bipolar testing were a little more complex but still completed in a manner of hours and were solely subjective.
What I have learned the last two days at the PNP Center is these Mental Health diagnoses don’t have to be solely subjective.
There is testing available that can actually map brain waves to determine the REALITY of what’s going on versus the GUESSING of what’s going on. OBJECTIVE versus SUBJECTIVE diagnosing.
This is huge!
I will spare you all the ‘big word’ details but here are just a few of the preliminary findings from actual testing, not subjective observation:
`1. My 11-year old son does NOT have ADHD. This means we have been pumping him full of narcotic-level drugs for FIVE YEARS for NO REASON. While he may still be hanging out on the outskirts of the Autism Spectrum, the reality of what has been causing his cognitive and interpersonal communication skill issues is the fact that the three parts of his brain (front, back, and middle-think mohawk) are not connecting with each other. Packets of data are dropping in-between each.
If those three parts of his brain were a symphony orchestra, instead of playing the same song in unison and harmony, they are each rockin’ out to a totally different tune and are in no way playing together.
My poor baby essentially hears the noise of all three orchestras 24/7.
2. My 12-year old Bipolar son, OH WAIT! We found out he is actually NOT Bipolar but is experiencing non-stop seizure activity in his brain. Small seizures he is not even aware are happening constantly. When one ends, another one begins.
Small in size but not in impact.
These seizures can create the same symptoms as someone who is Bipolar: mood swings, raging, fatigue, memory issues, etc.
So, in case you’re keeping score, this means we have been pumping various cocktails of potent drugs to the likes of Focalin, Respirdal, Lamotrigine, Trileptal, Vraylar, Depakote, Zyprexa, Lithium into TWO CHILDREN for FIVE YEARS for NO REASON!
Try working through the parental guilt of drugging your kids when it turns out it wasn’t necessary. We thought we were doing everything we could to help our children but we didn’t know what we didn’t know.
Then, try to harness your off-the-charts enraged parental anger as to why no one ever recommended you have this level of comprehensive neurological testing that would have DEFINITIVELY determined whether or not my children have ADD/ADHD, Autism, or is Bipolar BEFORE we made the gut-wrenching decision to pump them full of addictive poison.
Every Mental Health child deserves this level of testing. Why is this not required before a Psychiatrist can prescribe these toxic medications?
GRRRRR…this Momma Bear is furious!
Finally, try and harness your empathy for other Mental Health parents who are still unaware these types of assessments exist. Assessments that could change the course of their children’s live’s forever.
More importantly, even if they did know, many probably couldn’t afford the testing. We paid $8495 PER CHILD for our two days at the PNP Center. Don’t get me wrong, it was worth every nickel and then some, but the fact remains it was expensive.
Our medical insurance (which is very good insurance) covers very little of that amount. You pay the full amount up front and file with your insurance after the final reports/diagnoses codes are completed—three to four months after the up front payment is made.
So many Mental Health families that need this type of testing (although they are currently unaware they need it) would not be able to access it anyway because it is cost prohibitive.
THIS IS WRONG. JUST WRONG!
Needless to say, my mind is blown completely. This situation needs to change, in a big way, and I am going to figure out how I can make a difference in increasing awareness.
Let’s face the reality of this situation. My children would have remained misdiagnosed, and improperly medicated, their entire lives if my guilty pleasure wasn’t watching the Dr. Phil show. This reality is insane and NEEDS TO STOP NOW!
So, as a family, we will begin to embrace a new normal.
A normal that will eventually lead me down a path of undoing everything I have taught my boys over the last five years. I have made it my mission as a Mental Health Mom to be VERY proactive in teaching my boys about their disorders (people always tell me they can’t believe how knowledgeable and articulate they are when talking about their Autism, ADHD, and Bipolar disorders). I have been proactive in teaching them how to embrace a normal that no longer exists. How do you even begin to explain that to a child?
Everything will change in our world. Doctors, treatments, therapies, diet, they way we homeschool, everyday routines…everything.
We are very optimistic about the future. More optimistic than we have been in years. The road will be long but the reward will be great.
Eventually, based on initial observations, my children’s issues can be managed WITHOUT MEDICATIONS (or at least ones far less potent and dangerous than the ones they have been on throughout the last five years). My children have a chance to significantly improve their lives.
What a beautiful gift. I just want everyone else in our shoes to have the same gift. The gift of knowing whether or not the normal you are embracing is the normal you should be embracing.
Update: The boys have started their neurofeedback training! Follow video updates on my Facebook page, Mental Health Mom at https://www.facebook.com/embraceyournormal/