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The Game of Being Diagnosed

Drawing of head with butterfly inside

Although our son, Sean, was diagnosed with a cancerous brain tumor at eight months old, his main diagnosis from various psychiatrists would not be brain injury. Instead, he was diagnosed with everything from Bipolar Disorder to Oppositional Defiance Disorder. In hindsight, I wonder if this is the nature of the medical community's system of dispensing medication. They must follow the DSM-IV, which is the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition. In order to dispense medication to help "control" a certain behavior, a diagnostic code from the DSM-IV must be listed in order for the the insurance companies to pay for the medication. It's a hoop the doctors and the patients must jump through in order to obtain the "prize."

The prize for the doctor is money. The prize for the parent or the patient is a band aid to help control the problem. In the end, many more problems can be caused from the endless side-effects of the medication. As a parent of a child who traveled through this system, the depth of my desperation ran deep. As I lived through years of dealing with an aggressive child, I thought, "I'll do just about anything to stop this madness!" I ran to the community that offered band aids.

I also engaged in years of research to try and understand my son's quirky and sometimes destructive behavior. I saw improvement when I provided the healthiest foods possible and learned about calming techniques (for both of us!). For now, we use a variety of all methods to keep Sean's brain calm. Everything matters, from good sleep to healthy communication.

Yesterday we visited a new psychologist to help Sean process the many losses he has coped with over the years. It's a challenge trying to keep the adult with different abilities in a stable environment, at school and home. Sean is now attending his eighth school. He is living in his fifth "home" setting. Along the way he bonded to workers, aids and students. With transitioning to different educational and home settings, he has to say "goodbye" to people on a regular basis. These losses are difficult, for the parents as well as the client.

When the adult needs to move out from the family home, there are options from the group home setting, the adult family home or to independent apartment living. Whatever setting they are able to qualify for, you can be sure the first question they will be asked is, "What is your child's diagnosis?" This is a label they hold onto for their entire lives. It's important you get it right.

In our case, Sean's many diagnoses confused me. He was such a complex guy and we felt like we "burned out" the psychiatrist every couple of years. They would all say the same thing, "We've tried every medication to help your son. We are out of options." This was the signal to find a new psychiatrist. Each new doctor handed out new diagnoses.

I don't know if my experience is typical, but because I would enter each psychiatrist appointment armed with medication knowledge, the doctors would ask me, "Which medication would you like to try this time?" I would always have a suggestion! Talking to other moms on the latest and greatest medication was a common topic of conversation. If you read my past blog on "Medication Madness," you will note that it was my common practice to also have knowledge on the contraindications of each medication - how they interact with each other. My recent nightmare experience was a lesson learned on this subject!

My recommendation to each parent is to research your child's behavior and symptoms, talk to other moms, then go forward to your doctor appointment to the neurologist or psychiatrist. Be as well-informed as possible. Next week I will be describing "Acquired Brain Injury." Once I understood my son's true issues, the fog cleared and I had a clearer path to follow to obtain proper help for him. That is my prayer for each one of you - a clear path to a proper diagnosis.

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