Inside Gillette Blog


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.


No Helmet? No Ride!

Posted On: 04/29/2015

By: Mary Barsness

Editors Note: Read Mary's original blog post highlighting her son's Willi experience at Gillette here.

When our kids are little we ask them to hold our hands in situations we feel they could get hurt. As they grow up we give them more room to make their own way in the world. We warn them of all the dangers, but we work to balance that with the pure joy the ignorance of childhood affords. Some of the dangers we can control and some we cannot.

When my 14-year-old son fell off his longboard (a longer, faster type of skateboard) the evening of July 7, 2014 we almost lost him. He was alone. He was not wearing a helmet. Although he initially presented a bit disorientated, there wasn’t a scratch on him. Thankfully, a neighbor friend and his father both knew something was wrong. That night Willi’s brain began to bleed and swell. He had fractured No Helmet, No Ride Gillette Children'shis skull and suffered a traumatic brain injury.

I first saw Willi in the Level I Pediatric Trauma Center at Gillette Children’s Specialty Healthcare and Regions Hospital. It was the worst thing I have ever seen in my life. My first instinct was to grab his hand. Along with his father and our families we would sit by his bedside, someone always holding his hand so he knew we were there. On July 11th the doctors lifted the medications for a bit to see if he would respond. After a lot of persuasion, Willi squeezed his father’s hand with his left hand and mine with his right. We didn’t know if he would walk or talk to us again, but he squeezed our hands. That somehow meant he knew we were there. It felt safer.

Last week Willi had a checkup with Mark Gormley, M.D., who’s been with us since the beginning of Willi’s rehabilitation. There’s a standard series of physical tests to see if the brain is operating correctly. I choked up watching this drill I have now seen a hundred times because he did it perfectly. I thought of that first time he squeezed our hands in the PICU. It was weak, confused and uncertain. These days Dr. Gormley is putting his own hands at risk telling him to squeeze as hard as he can. Dr. Gormley released Willi from his care – a mere nine months after his fall. It has been a miraculous recovery.

We’ve learned a lot from this journey. We know how amazingly blessed we are to have a place like Gillette so close to home, how incredibly powerful it is when a community of friends and family surrounds you in love and support, and that miracles are real. We have also learned how many kids are not wearing helmets. A lot of the scary things in life are things we can’t prepare for, or protect our kids from. This is not one of those things. Willi probably would have gotten hurt even if he had had a helmet on, but would he have gotten this hurt?

While waiting for him to wake up, I had a lot of time to think. Seeing Willi’s friends who were coming to the hospital, all I could say was, “Wear your helmets. Promise me you will wear helmets.” They all promised. It wasn’t long into this experience I knew I had to share this message. I did a phone interview from the hallway of the PICU the first week. Bring Me the News headlined it “No Helmet No Ride” (link below) and it stuck with me.

As a parent I guess I had given up the battle. It wasn’t a conscious decision. I just stopped fighting it. He was such an amazing athlete with great reaction time, and he wasNo Helmet, No Ride right; none of the kids at the skate park or riding around the lake were wearing helmets. Since Willi’s accident it’s all I can see — kids on skateboards, rollerblades and bikes without helmets. I decided to launch a program offered through the Minnesota Brain Injury Alliance called No Helmet No Ride. The goal of the program is to reach out to middle and high school students and encourage them to wear their helmets on bikes, blades, and boards. Eventually, we hope to add helmet giveaways. Click here to learn how you can support our efforts and get involved.

I’ve heard people talk about getting their “calling”. I know what they mean now. It’s the thing you know you have to do, even though you’re not sure how. It’s the thing that wakes you up at 4 in the morning and whispers to you that you’re supposed to share this because it will make a difference. I am not sure I would be strong enough to share this message if our story had a different ending. If it weren’t for the doctors, nurses, rehab staff and everyone at Gillette giving us all such amazing love and care, including their support of the No Helmet No Ride program, we wouldn’t be able to have this voice. There just are not adequate words of gratitude for our newfound family.

P. S. I still try to hold Willi’s hand. Fifteen-year-old boys love it when their mothers hold their hands.

No Helmet, No Ride on Bring Me the News.


Progressing From Concussion to Classroom With Occupational Therapy

Posted On: 04/24/2015

By Heather Forst, Occupational Therapist - Clinical Educator

A concussion is a mild traumatic brain injury. It occurs when someone sustains a hit to the head or a force to the body. The force causes the brain and head to move quickly back and forth, disrupting the balance of chemicals in the brain. Although concussions require proper care and time to heal, most people recover fully.

Symptoms of a concussion can include headache, vision changes, dizziness, nausea, difficulty concentrating or sleep changes. You don’t have to be “knocked out” to sustain a concussion. A health care Progressing From Concussion to Classroom With Occupational Therapyprovider diagnoses the condition. Because children and teens might encounter challenges returning to the classroom, your provider might refer your child to occupational therapy to help with a successful return to school.

An occupational therapist will complete an evaluation, looking at your child’s:

  • Vision and how any vision changes could affect school performance or daily activities
  • Eye-hand coordination skills
  • Memory, organizational skills, and attention as they relate to independent actions at school, at home, and in the community
  • Sensitivity to light, sound, touch, or movement

Gillette’s Children's Specialty Healthcare's team of occupational therapists have developed a process to help your child recover from a concussion. Depending on your child’s age, he/she may progress through up to four stages, with a focus on the following areas:

  • Vision
  • Mind-Body Awareness (general coping strategies for headaches, stress, or other symptoms)
  • Cognition (as it relates to everyday function)
  • Daily Activities (following a daily routine at home/school, completing chores, managing time for homework, keeping track of homework, etc.). 
  • Your child’s occupational therapist (OT) may ask your permission to coordinate with your child’s school if your child is having issues with vision or if a deficit is noted on your child’s vision screening. Your OT might suggest school/classroom accommodations to help your child be successful at school while  brain and vision functions continue to recover.

Our therapists have a wide variety of tools to help your child heal.  We might offer standardized tests to help identify cognitive skills that are challenging for your child. We also use our clinical expertise while watching your child do things like cook, make Play-Doh, or go to a café. Such activities let us observe skills including time management, task initiation, emotional control and persistence. We can use technology (such as your child’s smart phone or iPad) paired with various applications to help develop memory, planning, or organization skills. Adding those activities to your child’s therapy sessions helps them carry over the skills successfully outside of therapy.

Click here to learn more about occupational therapy at Gillette.    


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.


Meet Us Monday - Nicole Williams Doonan, M.D.

Posted On: 03/09/2015

1.) What is your position and role at Gillette?  I am a pediatric neurologist at Gillette Children's Specialty Healthcare.

Meet Us Monday - Nicole Williams Doonan, M.D. 2.) What has been one of your most rewarding moments at Gillette? I am lucky, because I experience rewarding moments on a regular basis at Gillette. I enjoy spending time with families and children in clinic. I have met so many wonderful and inspiring families through my work at Gillette. I am most rewarded when I am able to provide an explanation regarding a particular symptom and develop a treatment plan that may include education and reassurance, or a medical intervention for symptom relief. 

3.) How does your position fit into caring for those who have cerebral palsy?  As a neurologist, I am one of the specialists who introduce the diagnosis of cerebral palsy to a family. Neurologists also provide information to families about the cause of cerebral palsy for their child, which may include interpreting brain imaging studies or ordering new studies.  Neurologists directly manage or co-manage many of the symptoms of cerebral palsy (such as spasticity and motor delays) and neurological conditions that can sometimes accompany cerebral palsy (such as epilepsy, cognitive disabilities, attention difficulties, language delays, dysautonomia and sensory issues) by recommending medications, rehabilitative therapies, psychology/neuropsychology referrals and/or educational interventions.  Neurologists also screen for related medical conditions that may require additional treatment, such as vision impairment, swallowing difficulties, growth concerns, sleep problems or orthopedic abnormalities.

4.) What are the benefits of working with an interdisciplinary team of caregivers?  The logistics are easier for both families and providers when the necessary specialists all practice together in one medical system. At Gillette, I often consult directly with other physician specialties, psychologists/neuropsychologists, and therapists about my patients.  This results in comprehensive, higher quality care. We all evaluate a child through the lens of our specialty training and personal experiences, so children at Gillette benefit from the knowledge of multiple experts.  I benefit professionally by constantly learning from my colleagues.  If I don’t know the answer to a patient’s question, there is likely someone at Gillette who can answer or point me to someone else to ask.  We also have an amazing staff of social workers who help families access available community resources.          

5.) What advice would you give a parent with a child who has cerebral palsy? My advice changes depending on how old a child is, how early it is in the diagnosis, what the child’s needs are and the parents’ questions.  In general, I stress that children with cerebral palsy fall on a spectrum and each child is unique.  Although the symptoms of cerebral palsy can change over time, I emphasize that cerebral palsy is not a progressive or degenerative disorder.  Although we don’t have treatments that can cure the underlying brain abnormalities that result in cerebral palsy, we have many treatments to help children reach their maximum potential.  For parents of young children who have mild cerebral palsy, I might tell them “success stories” about teenagers I take care of with similar symptoms, who play basketball or tutor kids or are going off to college.  I also try to be aware of the fact that parents may have emotional struggles at certain ages or stages outside of the initial diagnostic time period, such as when their child misses certain educational milestones or social milestones (driving, prom, etc.).

6.) What are some of your hobbies outside of work? Running — often around the Minneapolis Chain of Lakes and typically running in at least one 10-mile or half marathon race each year, hiking, cross country skiing, playing piano, singing, learning about wine, baking and travel (favorite repeat vacations include Hawaii and France).

7.) What is one fun fact about you? I caught my personal best largemouth bass 21-1/2 inches (6 pounds) while fishing with my husband last summer.


My Gillette Story by Rob Collins, Dad to Cole

Posted On: 02/03/2015

Our family’s journey with epilepsy started in 2007 with an isolated seizure.  Our son Cole, who was just 2 years old at the time, doubled over in early September with a full body seizure.  We had him checked out and thought we were in the clear.  By the time Thanksgiving rolled around, though, Cole was having over 100 seizures per day, of multiple kinds.  We were desperate to get help.  We asked My Gillette Story by Rob Collins, Dad to Colemy brother, Gary, who is a surgeon at Regions Hospital here in St. Paul, for a suggestion.  He told us to go to Gillette Children’s Specialty Healthcare.  We were referred to Dr. Beverly Wical, a pediatric neurologist at Gillette. 

We tried different medications, none of which seemed to work.  Gillette suggested we get a second opinion, which we did.  That doctor from a different facility told us “pad your kitchen floor and get him a helmet.  I’ve seen this many times.  This is as good as it’ll ever get.”  We were devastated.  That was the Friday before Christmas break of 2007.  Dr. Wical was leaving for two weeks and we were scared.  She cleared her schedule that Friday afternoon and met with us for over two hours.  I remember during that meeting she held up her hand and told us that of the patients she has seen with similar severity of seizures, she could count on one hand the number of patients that are functioning at average or above-average levels. 

I know this doesn’t sound like the best of odds with the information we were getting, but it gave us hope that Cole could be one of the five.  She proceeded to tell us that we’d keep trying new combinations of treatments/meds and hopefully we’d find the magic combination that would work for Cole.  The doctors and staff at Gillette worked continuously to find that magic combination. 

While Gillette wasn’t able to give us the answers as to what our future would hold, we left that meeting not feeling hopeless.

We got through Christmas, but Cole was still having seizures.  We were worried about our son, our family, our finances – wondering if we’d be able to pay for Cole’s medical care.  Could we keep our business solvent with one of us having to be with Cole 24/7 and having two other young daughters to care for?  

By the end of January, 2008, Cole was still seizing and meds weren’t helping.  We talked with Gillette about trying the ketogenic diet, a highly specialized diet that can help treat certain types of epilepsy.  They wanted a 120 day commitment.  At that time, 120 days seemed like an eternity. 

My wife Tammy’s father, Merle, had come to all our appointments with us and helped with Cole so both Tammy and I could concentrate on the doctor.  When we got home and said were going to try this high-fat, low carb, low protein, low calorie diet to control seizures, our families said they didn’t see any way that bacon and butter would stop Cole’s My Gillette Story by Rob Collins, Dad to Coleseizures.  But Merle simply said, “They don’t have any other choice.”  And that was it.  We got started on the diet. 

We noticed immediately some clarity.  It took 90 days, but on day 90, Cole went seizure free for a whole day and, essentially, hasn’t looked back. 

Cole has been seizure free for just over six years.  As we were preparing this blog post, we realized that Karri Larson, our Gillette dietician, has approved everything that Cole has eaten over the last six or so years. 

We’ve taken the diet on road trips to Florida, Branson, Texas, Sedona, The Grand Canyon, Yellowstone and Glacier Parks as well as many times to Lutsen on Minnesota’s North Shore.  Cole is now 9 years old and thriving. He is in a partial Spanish Immersion program in Forest Lake Public Schools.  He is in Boy Scouts, likes to camp, hike, play Legos and Skylanders.  He’s active in his church and loves to swim.

Thank you Karri.  Thank you to Shani Norberg, M.D.,Nancy Kammer, M.D., Beverly Wical, M.D. and so many of the Gillette nurses and support staff that have been so helpful and have given us our life back.

 


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.

X-Ray

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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