CNNH Stories: Leo

“I took Leo to various neurologists, pediatricians and therapists. One of them told me he had something called sensory processing disorder, which meant he had a very immature functioning system. In Leo’s case, he had a very high pain tolerance; if he hit his head on something, he wouldn’t feel it. After a while, even after I followed the proper instructions for their therapies, he was still having issues. I knew something wasn’t quite right. I felt something more was going on. I needed to find out what that was.

I heard about CNNH and brought Leo for an evaluation. It didn’t take the CNNH team long to find out that Leo has a form of epilepsy. He has spikes in his brain that make him feel nauseous, panicky, clammy, and make his heart race. He doesn’t have seizures like you’d imagine those with epilepsy have; he is still conscious, but he says that he starts feeling differently. Sometimes he sees spots that could last two to five minutes. A lot of that is brought on by his being photosensitive. That’s what happens when the right and left sides of the brain aren’t communicating. It’s difficult, but at least we know what it is and how to treat it, thanks to everybody at CNNH!”

-Sue H.

CNNH Stories: Wayne

“Everyone has heard the saying a picture speaks a thousand words. Some pictures speak infiniteness. In a high school auditorium I hear the name of ny son being called for the Junior National Honor Society. I have tears coming from my eyes and for once they are not tears of sadness, they are tears of joy.

My son Wayne has a multitude of neurological issues that he deals with on a daily basis. However he never lets them stop him from doing anything. He has always been in a main stream/special education department of our hometown school system. My son was diagnosed with Dyslexia and Dyspraxia in Kindergarten. So as a team we worked through the struggles that came along with it. He learned to deal with it and excelled. Next came the dreaded diagnosis at 10 years old of Asperger’s on the Autism Spectrum. The meltdowns were frequent and seemed to last forever. Again my son was surrounded by an incredible group of people at CNNH who helped our family and his teachers at every turn, good or bad. As a teenager came the next prognosis of Sleep Phase Disorder. Yet again this wonder group of people at CNNH stepped in for him and stood behind him no matter what.

From the moment we walked though the doors at CNNH, they treated us with the upmost of respect and support. It never wavered no matter what came up for my son. Through the tears, heartache and now one of the most wonderful things, they have been a part of forming the incredible son I have now. We have good days and bad days but through thick and thin, I know I am never alone. They are only a phone call away. They go above and beyond and back again. There is no way for me to really thank them for all they do, but if any of those wonderful people needed anything from me I would not hesitate to be there, like they have been for my son Wayne. He has bloomed into a kind, smart, sweet and well-balanced child. Without them this could not have happened. Endless amount of thanks goes out to them from me. As Wayne walks across the stage to receive such a prestigious honor, I hope they know they were an enormous part of making this picture come true!”

Sincerely Yours,
– Mrs. Corson

CNNH Stories: Leo

“CNNH has transformed our lives. When Leo turned 15 months, we observed that he was suffering from some form of expressive delay. Leo easily became frustrated, and he would throw himself against the wall and couch seeking some type of deep pressure and sensory input. Leo qualified for Early Intervention, but it was not until Leo came under the care of the CNNH team did we feel that every aspect of his care came together regarding his diagnosis and educational plan. Everyone, from the girls that answered the phone, to the office manager, to his BCBA therapists, nurse practitioner and creative arts therapists, provided us with the direction, strength, support and encouragement to help us identify the right educational environment for Leo and to connect us with other specialists in the community. Every member of the CNNH team has been accessible, caring and compassionate. My son was not just another file number, they saw him as a young toddler with big, brown eyes and a bright smile. After just six months of being under CNNH’s care, Leo maintains strong eye contact. He is able to speak (a lot!), make his wants and needs known, toilet independently and greet others. Most importantly, Leo is able to follow directions and stand still. He is no longer that frustrated little boy who had the weight of the world on his shoulders. Leo is a bright, academically gifted toddler that will be able to transition into Kindergarten at a local Catholic school in a year.

No words can emotionally capture the gratitude we have for the CNNH team. Because of their dedication toward Leo’s success, anything is possible regarding our son’s future. When we asked Leo what he wants to be when he grows up he said, “I want to be a doctor or President of the United States!”

-Leo’s Mom

CNNH Stories: Brady

“Brady is our fourth boy and we noticed some substantial differences in his maturing as compared to our other boys. He wouldn’t respond when we spoke to him. He wouldn’t even turn his head. We took him to an audiologist thinking he was deaf (at least hard of hearing). He passed that test. Another problem we noticed was his lack of speech. He was only 18 months old but he didn’t utter a word. He also would go into “his own world” spinning around and around endlessly and flapping his hands in the air for no reason.

We first took him to a major children’s hospital in the city. They diagnosed him with Autism and said we might be able to begin therapy in six months.

We had a friend recommend CNNH. We called them and got an appointment in only two weeks. Not only did they provide prompt treatment, the service we received was above and beyond what we expected. The CNNH neuropsychologist narrowed Brady’s diagnosis down to PDD. He began a weekly ABA therapy program and has been involved in numerous social groups to encourage his growth and social interactions with peers. The great thing about CNNH is it allows him to grow and offers new opportunities to assist him in his maturity.

Brady now talks continuously, is so happy and interacts with other children all the time. Even though Brady has improved a lot, he still has further growth potential. A great partner like CNNH will help Brady to develop to the highest level possible. Brady has come so far and I always want to brag about him!”

-Karen F.

CNNH Stories: Christian

“I have been searching a long time for answers regarding concerns I have had about my son. I have gone from doctor to doctor and everyone always says “he is just a boy.” CNNH was the only place that did not pretend to know my son more than me and truly listened to my concerns. I finally felt validated and heard. The CNNH neurologist listened to me and started exploring my son and finally getting answers. They uncovered the root of his problem and when CNNH switched me to a different neurologist, they continued the same exploration and did not stop until every stone was unturned.

CNNH has helped me and been available to me anytime I needed. I truly do not know where we would be had we not found this group of amazing professionals.”

-Crystal R.

CNNH Stories: Adam

“We are so thankful to have been referred to CNNH to help care for and finally treat our son Adam’s complex neurological issues!

Our journey started around the age of 3 when we began seeing a Neurodevelopmental Pediatrician due to hyper-activity and aggression. Starting around 5 ½, he began having both vocal and motor tics. As Adam became school age, we also began to further understand his learning disability and other issues related to his condition.

We began experimenting with medications under another doctor’s care, but considering the side effects, we were not seeing much improvement or benefit. This went on for more than four years, and about 15 different medications. We saw four different neurologists, three psychologists, psychiatrists, including going as far as Rochester, NY, which is 350 miles away from our home in hopes of finding a doctor that could help us. Finally, we were referred to CNNH.

The first visit with the CNNH Neurologist, he took saliva samples for several genetic tests, the goal being to “peel back the layers” to better understand Adam. The first test was to see what medications could be used, and the second was looking at genetic factors that could be causing some of our son’s behaviors.

After nearly two years under CNNH’s care, our son is much more stable and able to interact with our family and his peers! The CNNH Neurologist was not only a doctor with an amazing bedside manner, but a scientist using data to make decisions in our son’s treatment. They made our family so confident we are getting the best possible care, and while in the office with them, we feel like we are their only patient.

The entire staff at CNNH is excellent. Every call and every email is answered expediently and no request goes unanswered. The right care means so much to parents of children with disabilities, we are so grateful to be a part of CNNH’s community!”

Kindly,
Bruce and Dorothy R.

CNNH Stories: Julie

“For nearly a year my 16 yr old son has suffered from constant debilitating headaches. He’s been unable to attend school due to the pain and difficulty concentrating. We visited three different neurologists to find answers, and always ended up with the same recommendation: push through the pain. But that wasn’t an acceptable treatment plan for our family. We became more determined than ever to find answers.

After doing additional Internet research I learned CNNH treats headaches. I had previously thought CNNH just treated children with developmental disabilities and brain injuries. But I found out they also have a comprehensive headache program. After speaking with other medical professionals in the area, I learned that CNNH has a team of experts who might look deeper for underlying causes of my son’s symptoms. That was exactly what we’d hoped for.

The CNNH neurologist we met with spent nearly two hours with us discussing my son’s symptoms and medical history. He even brought in an adult neurologist working with the practice to collaborate. They listened carefully to all the details we shared. Both doctors asked relevant, yet ‘outside the box’ questions that renewed my confidence in the process.

My son’s doctor said that he would take a multi-pronged approach to find the cause of the headaches, rather than simply treat my son’s symptoms. He suggested possible causes, and he made both diagnostic and treatment recommendations that no other doctor had mentioned before. I couldn’t believe it. I felt like we finally had a solid plan for approaching the problem. That first visit renewed my hope that my son would find relief.

As we have embarked on our plan, I’ve also discovered that CNNH does not cut corners on quality, service or care. They have invested in top technology and professional, compassionate staff.

I finally found a partner in caring for my son and finding him relief. I am grateful to the team of professionals at CNNH for partnering with us on this journey, and I feel confident that together we will find the best course of action to help my son return to a happy, active life!”

-Julie W., Cherry Hill, NJ

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.

CNNH Stories: Tamika

“When Tamika witnessed her older son’s first seizure, she was stunned and surprised. She didn’t know what it was or what to do for him. When Tamika witnessed her younger son’s first seizure, she knew exactly what it was…well…sort of. His seizures were slightly different.

When Tamika witnessed her daughter’s first seizure, she knew that she had a mission in life: to be a hands-on mother, an advocate for childrens’ health and a dedicated teacher. This is exactly who she is–for her own children and for others’.

Tamika’s determination to find her children the best treatment led her to CNNH all the way from Texas, where her husband was stationed in the military. “We had been to several doctors in several states,” Tamika remembers, “but they inevitably became frustrated by the complex nature of the children’s disorders and simply guessed at their diagnoses and treatments. It wasn’t working.”

After years of struggling to find accurate diagnoses for her three children, Josiah, Alontay and Amina, Tamika found CNNH. “When their mom came to us the children were not doing well. They were all on several medications for seizures, headaches and sleep disorders,” comments a CNNH pediatric neurologist. “No one had been able to successfully treat their multiple disorders together. We started with a thorough investigation of their medical history, followed by a comprehensive medical evaluation. We made changes to their medication and treatment plans and follow them regularly to ensure consistent progress and success.”

Tamika is no longer surprised by seizures with any of her three children.

“I am so relieved to know why my children are having seizures and how to keep them under control. With proper treatments, I don’t have any more surprises.”

…Josiah, Alontay and Amina’s success story continues…

With diagnoses and treatment plans in place for her three children, Tamika can focus on their education and their personal growth. She spends a lot of time advocating for her children and really focusing on what works for each of them; that means she doesn’t continue with a teaching style that doesn’t work. “My children like to cook, so I use that time to teach fractions. As a break from math we play Uno…lots of Uno…and now, they know their colors.” Even though her children experience obstacles to learning, she refuses to let them use that as an excuse. “When my children get frustrated, I remind them that it might take longer to learn, but they cannot give up.”

Tamika tells her children, “You can learn anything; you just need to learn it differently.” She refuses not to teach her children something just because it might take a year or more to master. “It took my son three years to learn his colors,” she admits. “But, now he knows his colors and he’ll never forget them. Why wouldn’t I have offered that to him?”

What advice would she give other parents experiencing the same challenges? She shares, “I learn something new every day about my children. I encourage other parents to get to know each of their children individually. We all have gifts and it’s a matter of recognizing them and using them to the best of our ability.”

CNNH Stories: Ronnie

“My son, Ronnie, has been a patient of our neurologist for the past twenty-one years. Our first visit was when he was just three months old. Our neurologist was gentle, yet very direct about the journey we would be taking with our son and his need for ongoing supports and treatments. We were grateful to have the facts and a knowledgeable “partner” in Ronnie’s care.

Twenty-one years later we can reflect back and realize what a special doctor we have had. He is the whole package: knowledgeable, intelligent, kind, respectful, and he’s a great listener. He doesn’t randomly guess at his recommendations, nor does he use a trial-and-error treatment approach. He takes his time and does his research. He really knows his stuff. There is never a need for us to seek a second opinion. And if that isn’t enough, he is also so kind and considerate. I don’t call him often but when I do he returns my call immediately. He really listens to me (he also let’s me vent when I need to!). And, now that my son is an adult, he takes time to find out how he is feeling and address his concerns. He has even visited my son in the hospital. We consider our neurologist an extension of our own family and we feel cared for like we are part of his family.

When our neurologist joined the CNNH team, our experience was very positive. The CNNH team go far beyond what I would ever expect from a physician’s practice. From the minute we walk through the door at CNNH my son and I feel so welcome. The receptionist is so pleasant and spends time interacting with my son. And when I contact the scheduling department to make a change, they are accommodating and understanding about my circumstances. I have worked in the healthcare industry for many years so I know how challenging it can be to keep up with so many patient requests. The team at CNNH is always willing to go out of their way to help me. And, even though I have options through my employer’s health care plan, we chose to continue with CNNH because of the value of the services we receive. For that I am so thankful!”

Christine S.
Ocean, NJ