CNNH Stories: Colin

“As a Registered Nurse, I have extensive training and experience looking for the physiologic root causes of problems. Educators, I quickly learned, are not in the business of diagnosing kids (as they cannot be). My husband and I were hit with terms like: “learning disorder-not otherwise specified” and “possible processing disorder”. Interventions were put in place for Colin, but with such broad labels I thought, “How could the interventions possibly help him in any sustainable way?”. What was most heart wrenching was that Colin–our bright, perceptive son–would express self-awareness and frustration by saying, “Mom, I don’t understand why I can’t get it. I want it to ‘stick’ like it does for other kids.” His self-esteem was taking a nosedive, and he was suffering from chronic frustration and anger. He would rip up his homework assignments if he did not comprehend something, and as a parent it was extremely frustrating. Many times I would break down myself because I felt helpless and fearful.

Reading online gave me some leads. Could it be a sensory processing disorder? Is the primary problem behavioral? Does my son have high functioning autism? I also wondered if Colin could have some sort of subtle seizure disorder, something that was not outwardly noticeable, but caused cognitive difficulties. Although it is impossible to be impartial and unbiased when it is your child, I continued to think that there was a physical reason for Colin’s cognitive challenges.

I called our pediatrician and asked for advice. The pediatrician recommended CNNH. We made arrangements for a full neurological evaluation. Our first appointment included a thorough history and physical/neurological examination of Colin by a CNNH advanced practice nurse and a CNNH neurologist. Then an appointment was scheduled for both a “Resting” High Density Electroencephalogram (HD-EEG) and an “Active Task” HD-EEG (with Event Related Potentials [dERP]). The tests were painless for Colin and he was a real trooper through all of the appointments, exams, tests and questions. Very soon after the initial HD-EEG/dERPs were completed, we received a call from the office asking us to set up an appointment to review the HD-EEG results with the neurologist. I was very anxious, but at the same time I was encouraged that perhaps there was a lead that could help us to help Colin.

When we met with the CNNH neurologist next, he explained that Colin’s HD-EEG results did show abnormal discharges known as “spikes” in some sections of his brain. These were called “subclinical spikes”, as Colin was not having any observable seizures. He went on to explain that these subclinical spikes were in the past thought to be a benign childhood phenomena, but that recent studies have shown the presence of these spikes to be correlated with learning disorders. In fact, the CNNH comprehensive evaluation of Colin included a neuropsychological evaluation by CNNH neuropsychologist, who found that Colin was having cognitive difficulties. The CNNH neurologist explained that recent and current research has shown improved cognition and decreased EEG abnormalities in some children with “subclinical spikes” that are medicated with anti-seizure medication. He asked us to consider this, and in the mean time, he recommended continuing with the complete neurological evaluation, including magnetic resonance imaging (MRI) of the head to ensure there were no structural abnormalities of the brain that would cause the abnormal HD-EEG activity (fortunately, the MRI was normal).

During the process, I kept Colin’s teachers informed of the evaluation and results to date. I learned that no matter how strong your school district is, when you have a child with learning challenges–and you do not find the IEP/school plan to be effective or individualized–stay strong and be persistent and insistent!

Fast-forward to February 2013: Colin has been on his new medication for three and a half months. His grades at school have changed from C’s and D’s to A’s and B’s. His teacher notes that Colin is notably more engaged, participative and confident. He even helps others in his class, now, and his confidence is much improved. It is wonderful to see how proud he is of his accomplishments!

We consider ourselves so fortunate to have found CNNH and we hope by sharing Colin’s story, we are able to assist other families in helping children live happier, healthier lives.”

-Theresa M.