Inside Gillette Blog

MDA Summer Camp Sets the Stage for Recreation Therapy

Posted On: 08/18/2015

By Heather Ott, Therapeutic Recreation Specialist

As a Therapeutic Recreation Specialist, I encourage our patients and families to attend summer camp. When I learned that Gillette (a camp supporter and sponsor), had an opportunity for me to attend MDA Camp as a volunteer, I quickly jumped at the chance. The MDA (Muscular Dystrophy Association) supports kids and families living with neuromuscular diseases such as Duchenne and Becker muscular dystrophy, and spinal muscular atrophy. MDA Camp gives kids with neuromuscular conditions an opportunity to spend a week participating in a wide variety of activities like horseback riding, swimming, and adaptive sports.

On the morning of camp I found myself becoming nervous, wondering what I should wear, what we would we be doing, and even, should I bring sunscreen? As I was thinking about this, I realized this must be what all first-time campers must be wondering! So, after packing extra clothes and sunscreen, I was ready for whatever MDA camp would throw at me.

As I was driving into camp, the land around me was beautiful—everything was green and the sun was shining. As the road wound in I saw the sign that said “MDA Camp” and I instantly became excited. I was met by Kristina, who gave me a nametag and assigned me to a bunk. She told me to walk down the hill to meet my group, “the Rotary bunk”.

What I encountered was wonderful—just kids being kids! I saw kids chasing each other in power wheelchairs through the grass, kids at tables working on creative projects, and kids in large groups laughing together. It was striking to see the campers moving around, all of them wearing their blue Gillette drawstring bags. It made me feel proud that Gillette helps to support such an amazing community program.

As I walked towards my group, I became nervous. I was supposed to play a game with my new bunkmates. I was to ask them questions to figure out what animal name I had been assigned during check-in. Fortunately, my bunkmates were skilled in giving clues, even if I wasn’t asking the right questions and my animal was quickly identified. Then, everyone in my bunk introduced themselves. I explained that I worked for the place on the blue bags, and several girls in my bunk said they were Gillette patients!MDA Summer Camp

Soon, it was time for root beer floats and water fun. As everyone quickly ate their treats, I asked the counselors how they got involved with the camp. Most were college students and some were professionals from the health field, but everyone I spoke with was retuning for their second or fourth year! 

The highlight of the day was the firemen bringing out a huge hose, creating a waterfall over a path on the steamy day (pictured right). Whether campers used AFOs, power or manual wheelchairs, as they raced back and forth the roar of laughter sounded the same by all after being sprayed with the cold water. No one sat out. No one was unable to access the area. All the barriers melted away.

At the end of the day, I took a tour of the camp. Not only was the camp accessible in almost every area, it was also had a basketball court and was located on a lake. It was amazing to see a camp so accessible for campers to participate no matter the ability level. I am so grateful for the day I got to spend with these kids at THEIR camp!

Visit and MDA Summer Camp for more information.

Gillette Hosts Global Experts in Gait and Motion Analysis

Posted On: 06/03/2015

By: Mike Schwartz, Director of Bioengineering

Editors Note: Mike Schwartz (pictured right), a Clinical Scientist and the Director of Bioengineering Research at the James R. Gage Center for Gait and Motion Analysis, and an Associate Professor in the Department of Orthopaedic Surgery at the University of Minnesota reflects on Gillette’s recent clinical gait course, Clinical Gait Analysis: A Focus on Interpretation. During this annual conference, which is hosted by Gillette every third year, participants from across the globe (pictured left) gathered to collaborate and learn. This year, attendees hailed from 10 different countries! Mike Schwartz, Gillette Children's Specialty Healthcare

There is a rapidly emerging view of medicine that research, patient care, and education are all intertwined. This is definitely the case in the treatment of gait disorders in children. Research conducted at the James R. Gage Center for Gait and Motion Analysis spans biology, technology, treatment, and outcomes. Our research is focused on four key areas:

  • Biology: Our understanding of how humans walk and move
  • Technology: How we can better measure human movement
  • Treatment: Using the data we acquire to prescribe and perform optimal surgeries
  • Outcomes: How to measure and improve our patient’s gait, function, and overall well-being

Events like last month’s gait analysis course give us a chance to share our research findings and patient care innovations with our peers from around the world. In addition to disseminating knowledge, events like this also give us a chance to gain valuable insights from others. The gait course is one of many educational settings that our staff engages in. We often present at international scientific conferences, give lectures, conduct tutorials, and host visiting scholars and clinicians at Gillette.

The attendees of the gait course reflect the fact that science and medicine are global pursuits. The gait course is a great example of the collaborative spirit of our field. Our local team and our far-flung colleagues pull together every year for the past 25 years to deliver information that helps all of us provide optimal care to our patients. It is easy to fall into a narrow way of thinking about patients and treatments based on what we see going on in St. Paul. However, when we exchange ideas and results with our colleagues from around the world, we often see that there are an abundance of ideas about the best way to improve children’s’ gait.

Gillette Children's Specialty Healthcare has a well-deserved reputation for delivering outstanding care for children with cerebral palsy. This reputation is built on decades of effort by countless members of the Gillette team – including physicians, nurses, therapists, scientists, bioengineers, and other allied health professionals. Part of this reputation is derived from the research we conduct – a considerable amount of which emanates from the James R. Gage Center for Gait and Motion Analysis. Our center has been at the forefront of a number of important developments in the field, including the development of outcome measures that are used around the world [Citation], methods that make the data we produce more accurate and patient-specific [Citation], computer simulations that help explain the causes of certain gait patterns [Citation], and analytical methods that can predict which patients will have the best outcomes from a variety of surgeries [Citation, Citation].

I chose to work at Gillette, with its world-renowned Center for Gait and Motion Analysis, because it offers a setting where I can conduct research with clinical contact and relevance. Gillette offers a unique opportunity, maintaining a clear focus on patient care, while simultaneously supporting the efforts of researchers and scientists. To learn more about this research project and other initiatives, click here.

Progressing From Concussion to Classroom With Speech and Language Therapy

Posted On: 05/28/2015

Editor’s Note: Read part one of this two part series: Progression from Concussion to Classroom With Occupational Therapy

By Erin Ingvalson, Speech Clinical Educator - Rehabilitation Therapies

A concussion is a type of traumatic brain injury. It’s caused by a blow to the head or body, a fall, or another injury that jars or shakes the brain inside the skull. Following a concussion, your child may experience physical symptoms including headache, dizziness, fatigue, and balance or vision problems.  Progressing From Concussion to Classroom With Speech and Language Therapy

In addition, your child might experience cognitive symptoms such as slow or foggy thinking, difficulty concentrating, and memory problems. Those physical and cognitive symptoms can make it challenging to return to school following a concussion. You and your child might notice increased difficulties with language needed to participate in class activities and interact with teachers and peers. 

Specific difficulties your child might have at school include:

  • Struggling to make it through an entire day of school
  • Difficulty concentrating or paying attention
  • Difficulty learning new information
  • Difficulty understanding or remembering directions
  • Difficulty understanding or remembering what he or she has read
  • Difficulty coming up with words or losing a train of thought in conversation
  • Difficulty organizing thoughts for writing

If your child is experiencing any of those difficulties, a speech and language pathologist can help. Our team at Gillette is made up of experts who help children and their families manage cognitive symptoms that affect language and communication. We also work with your child’s team to help ensure a successful return to school following a concussion.

Your visit with a speech and language pathologist includes a thorough history of your child’s development and challenges following injury. We’ll provide testing to identify specific problems and, if necessary, develop an individualized care plan to target areas of concern. If ongoing speech therapy is recommended, your therapist will target the following:

  • Recovery of skills. We might have your child participate in computer and board games targeting speech and language skills (for example, if your child is having difficulties coming up with words during conversation or having difficulties following directions)
  • Compensation strategies when symptoms are present. We might teach your child how to know when the body needs rest and when to take a break (for example, if activities such as reading are causing headaches or frustration).
  • Recommendations to ensure a successful return to school. Regular communication with your child’s school staff—through phone calls and/or email—is essential to making sure that your child can transfer skills learned in therapy to an environment like school.

Learn more about speech and language therapy.

The Importance of Nurses in Gillette’s Care Model

Posted On: 05/07/2015

By: Karen Brill, Vice President of Patient Services

Ever since I was a very young girl, I felt a calling to become a nurse. There was a special person in my life who was a nurse, and I admired her greatly. She would speak to me about how she made a difference in the lives of the people she cared for. Sometimes those differences may have gone unnoticed by others, but because of her unique connections to those individuals she knew her efforts mattered. As a little girl those stories made an imprint on me. I knew this was a path I wanted to follow.

As I grew up, my passion never wavered. I studied hard and went to college to achieve my bachelor’s degree in nursing. Later I completed a master’s degree. I was driven to bring the key learnings of the mentors I’d had along the way with me as I began my nursing career. Over the years my approach to working with patients and families only became more grounded in seeing the uniqueness of each of them. Each day I was able to apply a truly holistic approach to caring for the patients and families. I relished my ability to take my time and make every patient interaction special.

Karen Brill, Gillette Children's Specialty HealtchareI recall my first few shifts at Gillette Children's Specialty Healthcare in the Pediatric Intensive Care Unit (PICU) as the night charge nurse. I was admitting a young man who had just survived a devastating accident; unfortunately we discovered that he had sustained a spinal cord injury. It was difficult having those conversations side by side with our neurosurgeons and the family. When the young man was awake enough to hear and understand the news, I was fortunate to again be by his side with his family and the other key members of the health care team to help him through. It was a long journey for him. First he healed enough to move out of the PICU, and then he was off to our inpatient rehabilitation unit. I am happy to say that he had a wonderful recovery. He and his family made many adjustments along the way, but our entire team helped them get where they needed to go.

Over the years I have worked at a variety of health care organizations. None compares to Gillette in providing patients and families with a truly interdisciplinary approach to care. I am very proud of how our teams, often led by our nursing staff, come together to meet each patient’s needs, improve the quality of our care and work toward a positive outcome. This occurs at Gillette daily. As I walk the halls and meet with staff or patients and families, I can see evidence of the model of care we provide. Recently I spent some time in our St. Paul Clinic. I watched how our team of doctors, nurses, child life specialists, respiratory therapists and others came together to make sure our patients were as comfortable as possible as they underwent an invasive procedure that ultimately helped relieve their muscle tightness. It was an amazing testament to our care model. In the end the patients and families were very pleased, which makes all the difference.

During Nurses Week, I hope all nurses remember why they were called to the profession and what moments keep them grounded and refreshed. Those memories help us come back each day and offer our true selves to patients and families. Just the other day I spoke with a group of nurses and nursing assistants who cared for a patient who had chosen to receive end-of-life care with us. Although it is always hard to say goodbye to one of our patients, each of those staff members shared wonderful moments of how that patient and family touched their lives. That patient will always hold a very special place in their hearts. I know the family will always cherish the loving care we provided that young man when he needed it most.

Thank you for all you do to make a difference in the lives of the patients and families we serve. You live our organization’s mission every day.

Seven Important Things to Know About Osteogenesis Imperfecta or Brittle Bone Disease

Posted On: 05/04/2015

Editor’s note: National Osteogenesis Imperfecta Awareness Week takes place from May 2 – 9, 2015.

Imagine breaking a bone by rolling over in bed. Or fracturing your foot by taking a step.

For people who have osteogenesis imperfecta (sometimes called brittle bone disease or OI), daily life can be difficult. With the right treatment, however, many children and adults live full, satisfying lives while managing this rare condition.

Gillette Children’s Specialty Healthcare is the region’s only health care organization with deep expertise in osteogenesis imperfecta and its complications- offering a multidisciplinary team approach. We offer testing, surgical and other medical interventions, rehabilitation therapies, braces and splints, and more.

Q: What is brittle bone disease?

A: Osteogenesis imperfecta is a hereditary (genetic) condition that causes a defect in the bone protein collagen. As a result, the bones of people who have the condition break frequently. Some sustain dozens of breaks during childhood. And parents of children with undiagnosed osteogenesis imperfecta often are suspected—wrongly—of child abuse.

Q: Is it common?

A: No. It is a rare condition that ranges from relatively mild to severe. Although severe forms are obvious in infancy—some babies are so fragile their bones break during birth—milder forms might escape diagnosis until childhood or later.

Q: What are the symptoms?

A: The primary symptom is fragile bones that break from relatively little impact. Multiple fractures can cause the arms and legs to bow, which makes them more likely to fracture again.

Fractures of the middle ear bones can cause hearing loss early in life. Some patients have brittle teeth resulting from an abnormality of tooth dentin. Often, the sclera (whites of the eyes) appear blue, gray or purple.

Although people with milder forms of the condition usually reach an average height, those with more severe forms are often short of stature. Some patients develop scoliosis (an abnormally curved spine) and have triangular-shaped faces.

Q: How is osteogenesis imperfecta diagnosed?

A: We begin with a thorough family history, a physical exam and X-rays. Those results may lead to more specific diagnostic tests, such as genetic testing, a bone density scan, and a skin or bone biopsy.

Q: What treatments exist for osteogenesis imperfecta?

A: The goal of treatments is to minimize the effects of the condition. Surgery helps manage recurring breaks, bowed bones or an abnormally curved spine. For example, we might place rods within the bone canal to stabilize and realign bones.

Certain medications can help reduce bone pain, decrease the number of fractures, increase bone density and improve a patient’s ability to walk. Exercise in a heated pool is often a safe and effective option for strengthening muscles. Orthoses (braces and splints) can prevent fractures and provide support.

Q: What makes Gillette a good choice for people who have osteogenesis imperfecta?

A: Gillette has years of experience treating the condition—and we care for patients from childhood into adulthood. In addition to diagnosing and treating patients, we teach them how to avoid the most common complications of the disease.

Orthopedic surgeons, endocrinologists, geneticists and pediatric rehabilitation medicine physicians are among the specialists who collaborate on custom treatment plans for each patient. Our team also includes dentists and audiologists skilled in working with children and adults who have disabilities. Our Assistive Technology and casting specialists provide casts, orthoses, and custom seating and controls for people who need wheelchairs. Our physical and occupational therapists help people strengthen their muscles safely and improve their abilities.

Q: How can I learn more about osteogenesis imperfecta?

A: To learn more about Gillette and our options for people who have osteogenesis imperfecta, visit our website.

Stephen Sundberg, M.D., pediatric orthopedic surgeon; Kevin Sheridan, M.D., pediatrician specializing in endocrinology; and Nanette Aldahondo, M.D., pediatric rehabilitation medicine physician, collaborated on an article on osteogenesis imperfecta in A Pediatric Perspective, our newsletter for Gillette’s referring physicians. This blog post was adapted from that information.

All About Integrative Care at Gillette

Posted On: 03/27/2015

By Becky Schauer, Registered Nurse

Holism is a word that is often thrown around but frequently misused.  Holism actually means looking at the whole of a person and seeing that each part is interconnected.  In a holistic model of care, each Gillette Children's Specialty Healthcare Wellness Modelcircle represents an aspect of one’s level of wellness.  These circles include: physical, psychological (emotional), social, and spiritual aspects of health.  All of the circles in one’s life are interrelated and connected.  At Gillette Children’s Specialty Healthcare, we use the phrase ‘integrative care’ to describe health care that aims to use holism as the model of care delivery.  It combines both conventional treatments (Western medicine, e.g. medication, surgery) with complementary ones (non-Western, e.g. massage, acupuncture) and acknowledges that each play vital roles in one’s health. 

 Gillette’s Integrative Care Committee works to explore ways we can enhance and optimize our patients’ levels of wellness.  This is an exciting time for Gillette, as we’ve continued to add new options of integrative care for our patients.  Areas of focus include aromatherapy, massage, adaptive yoga, acupuncture, osteopathic manipulative therapy, and healing touch. We also focus on providing care for caregivers.  

In the past year, a group of Gillette employees attended a massage certification course to learn the skills needed to bring bedside massage to patients on the hospital’s inpatient units and at Gillette Lifetime Specialty Healthcare, our adult clinic.  We have also begun to educate our staff on the concept of mind-body connection and how to integrate this mindset into their daily care of patients.  We have trained 20 members of our staff in adaptive yoga and mind-body awareness. We’re also formalizing our aromatherapy policy, as we have found this modality to be well-received among patients and families.  Finally, several of our physicians are involved in Gillette’s integrative care initiatives. Scott Schwantes, M.D., is certified in medical acupuncture and Todd Dalberg, D.O., is certified in osteopathic manipulative therapy. These certifications complement the medical care they provide in their role as physicians. 

We hope that our patients will be as excited as we are to explore these new integrative options and their role in enhancing the exceptional care offered at Gillette.  Please contact your medical provider to find out more.

Meet Us Monday - Tom Novacheck, M.D.

Posted On: 03/23/2015

1.) What is your position and role at Gillette Children's Specialty Healthcare? I am a pediatric orthopedic surgeon and director of the James R. Gage Center for Gait and Motion Analysis. I work with our gait lab team — which includes engineers, technicians, and physical therapists — to gather information to understand problems with movement.

2.) What has been one of your most rewarding moments at Gillette?   The most rewarding moments are developing long-term relationships with children and their families. I have some families that I’ve been seeing for more than 20 years.

3.) How do you fit into caring for those who have cerebral palsy?  As an orthopedic surgeon, I focus on problems that impact a child’s bones and joints.  For children who have cerebral palsy, even when spasticity is diminished, they still can have problems with their bone and joint alignment. We want their muscles to have the best capacity that they can, so correcting a bone and joint deformity will help them with that.

4.) What are the benefits, both professionally and for our patients, in working with an interdisciplinary team?  Care for children who have cerebral palsy or other disabilities needs to be comprehensive because certain medical conditions can affect many different functions. That could be communication, it could be eating, it could be mobility, it could be problems with seizures, or learning. We offer all of those services here as part of a team in one organization. And because my colleagues and I know each other, I can trust that my patients are going to receive good care - and caring care – with any specialist they see. Then I can concentrate on what I think I do best.  And we all know that no one can be the best at everything!

5.) What innovations or advancements have you seen that benefit our patients?  Our Gait Lab is one of the best in the world and was the first to be accredited.  There are only 10 - 15 accredited Gait Labs in the country.  Accreditation indicates high quality and also dedication to patient care. Our Gait Lab also has a tremendous amount of experience. It’s one of the two or three oldest Gait Labs in the country – and certainly one of the busiest in the country in terms of the number of patients we see each year. With that comes a lot of experience and understanding of our patient population.

6.) What advice would you give a parent with a child who has cerebral palsy?  In my practice, it’s not very common that I’m telling the child or the family that “you have cerebral palsy.” They already know that, and that can be a devastating thing to hear for the first time.  From there, it’s time to pick up the pieces and say, “Okay, you know that you have cerebral palsy.  Let’s make sure you understand what cerebral palsy means. Now what are we going to do to help?” Most people gain comfort from knowledge. We try to educate, answer questions, clear up misconceptions — and because families see all of us Gillette specialists working together, they’re not getting this piece of information from this person, that piece of information from another person. They’re getting all of it together from a highly coordinated team.

7.) How and why did you become an orthopedic surgeon?  I went into orthopedics because I like mechanical things and I like sports.  However, I did not know that I wanted to work with pediatric patients. Within two weeks of starting my pediatric orthopedics rotation during my residency, I went home and told my wife, “I know what I want to do.” It was the opportunity to influence the way children grow and the opportunity to work with kids and their families.

Positive Distractions: Finding Fun in Imaging and Radiology

Posted On: 01/13/2015

By: Jessica Pietsch, Imaging – Lead CT, Jennifer Severud –Imaging-Lead Outpatient X-Ray and Martin McLean, Imaging – Lead MRI Technologist

Radiology and imaging are often necessities for patients at Gillette Children’s Specialty Health Care. Imaging scans help to diagnose, manage and treat conditions. In other words, they let us look at what’s going on inside the body. Patients need imaging for all kinds of reasons, including to diagnose conditions such as fractures, congenital abnormalities and spine deformities.

Gillette is a proud member of image gently®, an alliance that promotes using minimal radiation in children while still obtaining high-quality images. Gillette meets image gently standards in the following ways.

• We employ highly trained staff.
• Our staff limits the use of radiation only to the amounts necessary for a specified body part.
• We use pediatric-level doses of radiation.
• We log all doses with the American College of Radiology.
• We also use positive distractions to meet image gently standards.

Positive distractions can help calm patients during imaging exams, providing them with a better experience. Adding elements of fun to an ordinary exam can drastically reduce patients’ stress levels. Positive distractions come with many benefits, including minimizing the need for general anesthesia. Let’s take a closer look at the three most common types of imaging and radiology procedures—and the different types of positive distractions we offer at our St. Paul campus.


An X-ray is in an invisible beam of radiation used to look at bones, organs and other parts of the anatomy. We use X-rays to diagnose scoliosis in the spine, check lower extremities for limb-length discrepancies, and identify fractures, bone anomalies and rare conditions.  Though many of our X-ray exams are quick and noninvasive, we make them easier by using positive distractions. 
For example, the equipment and walls in our X-ray rooms have bright and colorful decals. They even have twinkle lights on the ceiling. Kids love staring up at those lights! We also have an iPad loaded with games and shows that patients can play or watch during an exam.  And, of course, we offer pencils and stickers to our patients at the end of each visit.

Some patients can’t leave their rooms for X-ray exams. For them, we bring a portable X-ray machine (pictured below) to their room.  Much to the delight of our kids, this machine is decorated with fish in bright colors. The decals on the portable machine help kids take their minds off the exam, making the procedure less scary and the equipment less intimidating.  It also brings a lot of fun into the room.

CT Scan (Computed Tomography or CAT Scan)

A CT scan (pictured above) is similar to an X-ray, but an X-ray is only one dimensional. A CT scan can show images in three planes—top, front and side. These exams typically last from 15 to 45 minutes, depending on the patient’s ability to remain still. CT scans help us diagnose spina bifida, complex movement disorders, brain injuries and more.

Because patients often need to lie on their back during a CT scan, we have two 70-inch TV screens in the ceiling that play movies. Before the CT scan begins, kids can pick one of six different movie themes—from playful puppies to soothing oceans. The options allow kids or caregivers to choose a movie theme that corresponds to their mood that day, further helping to reduce anxiety.

MRI (Magnetic Resonance Imaging)

An MRI is a safe and painless test that uses a magnetic field and radio waves to produce detailed pictures of the body's organs and internal structures.  We use MRI exams to detect a variety of conditions, including those that involve the brain, spinal cord, skeleton, chest, lungs, abdomen, pelvis, wrists, hands, ankles and feet. In some cases, an MRI can provide clear images of body parts that are more difficult to see with an X-ray, CT scan or ultrasound.

MRI exams generally take at least 30 minutes for each body part, so longer positive distraction techniques are a must. We offer video goggles and more than 90 videos for everyone from toddlers to teenagers. We also offer headphones so patients can relax and listen to their favorite music.

We want to provide our patients with an amazing experience during their Radiology and Imaging visit. That’s why we work at creating a positive, fun and interactive environment!

New Research Offers Hope for Rett Syndrome Patients

Posted On: 12/02/2014

By: Timothy Feyma, M.D., Art Beisang, M.D. and Marcie Ward, M.D.

Rett Syndrome is a rare genetic disorder usually caused by mutations in the gene Methyl-CpG-binding Protein 2 (MECP2) that is located on the X chromosome.  Rett Syndrome occurs almost exclusively in females, since the gene that most often causes it is located on the X chromosome, and is thought to affect 1 in 10,000 girls. Males who inherit this genetic change often do not survive pregnancy. 

New Research offer hope for Rett Syndrome.Girls who carry the mutation often have slightly delayed, or seemingly normal development until 6-18 months of life when loss of developmental milestones may occur.  In many cases purposeful hand use and language can be lost.  The disease often continues to slowly progress over time and in time the ability to walk may be lost.  Seizures, scoliosis, constipation, and breathing pattern abnormalities are also frequently seen.

Gillette Children’s Specialty Healthcare developed a Rett Clinic in 2005. Over time we have collaborated with researchers locally to investigate ways to further learn about Rett Syndrome while providing expert care for patients with Rett Syndrome.  To date, there has been no treatment discovered that cures Rett Syndrome.  Given our work with this unique population, the Gillette Rett Clinic was approached by Neuren Pharmaceuticals to participate in a trial of new drug (currently called NNZ-2566) being developed to promote brain development.  

The Neuren guided experiment involved use of varying doses of the NNZ-2566 compound in addition to the use of a placebo group who received no active treatment. This trial looked at parental observations of their child’s behavior and seizures while on treatment in addition to physician graded observation scales, EEG, EKG, and laboratory data.  Improvement in functioning with no significant side effect burden was seen. Click here to read the initial announcement by Neuren Pharmaceuticals. The full details of the study will soon be released, but generally speaking improvement was seen in motor function, symptom burden, and in regard to parent specific concerns.

The hope for our clinic at Gillette is that we can continue to collaborate in such activities that will attack the root cause of Rett Syndrome in addition to managing symptoms. This study provides the first evidence of a treatment that might do just that.  We hope in time to manage the course of disease and prevent progression / regression while fostering optimal development for all those afflicted by Rett Syndrome.


November is Epilepsy Awareness Month

Posted On: 11/12/2014

By: Shani Norberg, M.D., Pediatric Neurologist

November is Epilepsy Awareness Month. More than three million Americans of all ages have epilepsy and 30% of those are children. One in ten people will have a seizure at some point, and one in 100 people will develop epilepsy.

The International  League Against Epilepsy defines epilepsy as a disease of the brain defined by:

  1. At least two unprovoked seizures (meaning there isn’t an obvious cause of the seizure, e.g., a high fever) in which the seizures occur less than 24 hours apart
  2. One unprovoked seizure in a person who has other conditions that often lead to seizures, such as: genetic/metabolic disorders, specific epilepsy syndromes (i.e. Dravet or Lennox Gastaut ) or structural problems of the brain including insufficient oxygen to the brain at birth, trauma or brain injury,  developmental brain malformation , infections of the nervous system or stroke.

When a child is diagnosed with epilepsy, it is natural for a flood of worries and emotions to surface. The patient, parents and other family members may experience anxiety, anger, embarrassment, depression and general uncertainty. Families may worry about how epilepsy will affect the child’s relationships and activities. They may also worry about how epilepsy will affect their child’s brain function and the ability to learn, concentrate and memorize. Understanding new medical information, how to care for a child, new routines, missing school/work days and learning emergency interventions may all be overwhelming.

To support the child and family with all of these challenges, Gillette Children Specialty Healthcare’s neurologists, nurse practitioners, dedicated nursing staff, social workers, child life specialists, pharmacists, dieticians, neuropsychologists and child psychologists may all play a role in the epilepsy care team.

Deeply embedded in the history, philosophy and mission of Gillette is the practice of whole-child, family-centered care. At Gillette we have expertise and experience in caring for children with epilepsy across all of these disciplines.  Utilizing specialists from all of these disciplines, goals of Gillette’s epilepsy care include:

  • To provide skillful management of seizures through medications, dietary therapies, vagus nerve stimulation, and consideration of the need for further surgical treatment.
  • To ensure that we provide the necessary support and services to allow children to reach their fullest potential and to foster the overall well-being of children and their families.

In combining multi-specialty expertise with our long standing whole-child, family-centered practice philosophy, we strive to provide the utmost support for children and their families coping with a diagnosis of epilepsy.

Click here for more information.

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