Inside Gillette Blog


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.


Hydrocephalus Awareness Month: Your Questions Answered

Posted On: 09/15/2014

By: Amanda Seeley, Neurosurgery Nurse Practitioner


Did you know that September is National Hydrocephalus Awareness Month? As one of four neurosurgery nurse practitioners at Gillette Children's Specialty Healthcare, I help our team take care of numerous patients with hydrocephalus, and answer many questions about this condition from patients, families and staff.  I also help lead the Hydrocephalus Association Walk at the Mall of America (photos below) to generate funds for research and create awareness! Here are the five most frequently asked questions about hydrocephalus and shunts.

This is my captionWhat causes hydrocephlaus?
Cerebrospinal fluid (CSF) is a water-based solution that flows in a certain path within our brain and spinal canal.  Usually, there is an even rate between how much CSF a person is making and how much CSF his/her body is absorbing.  Hydrocephalus occurs when there is a disruption in this balance or a block in the normal flow of CSF that naturally happens.  CSF can build up within the ventricles (fluid spaces) of the brain and can cause pressure to be dangerously high in the brain. There are many causes of hydrocephalus.  Babies can be born with congenital hydrocephalus.  Also, patients may have a high risk of developing hydrocephalus when they are babies because of an underlying diagnosis, such as spina bifida.  Other causes of hydrocephalus are acquired obstructions in CSF flow, like brain hemorrhage, brain tumor, or trauma.   

How is hydrocephalus treated?
Although there are a few medications that may temporarily treat hydrocephalus, the usual treatment involves surgery.  The most common treatment for hydrocephalus is a surgically implanted shunt.  This is a device that moves CSF from the ventricles of the brain to an area in the body where the patient can safely absorb it, most commonly within the sac that holds the abdominal organs, called the peritoneum. Working shunts can keep a patient’s brain at a normal pressure, but unfortunately can malfunction.  The average life of a shunt is about 5 years, but the range of shunt life is days to decades long.  The surgery to fix a non-working shunt is called a shunt revision.

My child has never had a shunt malfunction, how will I know if it isn’t working/what will it be like?
Every patient is different, but common symptoms of a shunt malfunction are headache, vomiting, sleepiness, and irritability.  I often tell patients, families, and caregivers to remember that it is not up to them to know if a shunt is working or not, it is up to them to let us know if they are concerned.  The neurosurgery team will help sort out if a patient’s symptoms are because of a shunt malfunction or something else.  Often times we use different imaging studies, like a head CT or brain MRI to get more information about the shunt’s function.   Remember that most episodes of vomiting and fever are not shunt related.


Will the doctor shave my child’s head during surgery?
Usually the pediatric neurosurgeons at Gillette Children's Specialty Healthcare do not need to shave a child’s hair for shunt placements or revisions.  Often, the surgeons will use dissolvable stitches that will not need to be removed after surgery as well.


Are there activity restrictions for patients that have shunts?

Our team generally does not recommend strict activity limitations for patients with shunts.  We do recommend avoiding scuba diving and sky diving due to the pressure dynamics, but otherwise encourage patients to be active and involved in the activities they wish to pursue.  Of course, we always remind patients and families to wear helmets appropriate for sports and activities as part of our general health recommendations.

 


Severe Epilepsy: How Gillette Clinicians are Improving Outcomes

Posted On: 07/18/2014

By Samuel Roiko, Clinical Scientist

As a regional leader in pediatric epilepsy management, Gillette Children’s Specialty Healthcare treats patients who have some of the most complex, and chronic, seizure disorders seen in children.  We offer our patients state-of-the-art treatments and services to help them achieve the best possible health, independence, and happiness.  Part of that commitment also includes research into things like SUDEP (Sudden Unexpected Death in Epilepsy).

As its name implies, SUDEP is a sudden, unexpected, non-traumatic death in a patient with epilepsy – without evidence of a structural or toxicological cause of death. The SUDEP rate is estimated to be 1.22 out of 1000 patients with epilepsy, but there are many factors that increase the risk of SUDEP. For example, the presence of an underlying central nervous system (CNS) disease, the age of the patient, and the age of onset of epilepsy all increase the risk for SUDEP. 

At Gillette, we believe that every child lost to SUDEP is one too many.  That’s why we were excited to participate in the 2014 PAME (Partners Against Mortality in Epilepsy) conference, held this June in Minneapolis (pictured above).  The goals of the conference were to foster knowledge, improve awareness, and hasten action around SUDEP. It was the second meeting of its kind, where clinical, basic science, and patient/family attendees came together to understand and support each other.

As clinical scientist for Gillette’s Center for Pediatric Neurosciences, I hoped to learn more about the state of the medical and research community regarding SUDEP.  How SUDEP happens is not known. The brain, heart, and lungs all form an intricate, intertwined network, and increased activity in certain areas of the brain can result in a lower rate of breathing, which can lower the heart rate, resulting in a spiraling loss of function. It is difficult to precisely determine what is the primary cause.

Many presentations gave hope with new advances. Serotonin and adenosine are two of many brain neurotransmitters in the brain that have been studied. Serotonin plays a role in heart rate and respiration, while adenosine is involved in wakefulness and arousal. Selective Serotonin reuptake inhibitors (SSRIs), commonly prescribed drugs, are a potential therapeutic to prevent SUDEP. Adenosine activity increases in mouse models of SUDEP, and can be blocked by caffeine. These intriguing findings raised many questions – more indication that further research is needed.

My colleague, Beverly Wical, M.D. emphasized the importance of increasing the awareness of SUDEP, and that we at Gillette are involved in research studies regarding SUDEP. We are actively working with colleagues across the country to form a national consortium to study SUDEP and its prevention. We owe it to our patients!

 


Gillette Physicians Rank Among Twin Cities’ Best

Posted On: 07/16/2014

Each year, Minneapolis-St. Paul Magazine’s Top Doctors list honors the Twin Cities top-ranked physicians in more than 40 specialties.  We’re honored that, once again, the list includes a broad representation of Gillette Children’s Specialty Healthcare physicians. Click the links below to learn more about the 2014 honorees who practice at Gillette.

With world-renowned expertise in treating patients who have disabilities and complex conditions, our Gillette physicians are dedicated to helping patients maximize their independence, health and happiness.  They’re similarly committed to the highest standards of patient safety and care.  It’s because of all of these things that families seek out Gillette from every county in Minnesota, as well as throughout the nation and world, for exceptional care and unmatched expertise.

Gastroenterology
Sarah Jane Schwartzenberg

Neurology
Beverly Wical

Pediatrics
Nancy Mendelsohn

Physical Medicine and Rehabilitation
Mark Gormley, Jr.
Marshall Taniguchi

Psychiatry
Elizabeth Reeve

Pulmonary Medicine
Paul Kubic

Rheumatology
Richard Vehe

Surgery, Neurological
Michael Partington

Surgery, Orthopedic
Mark Dahl
Steven Koop
Tom Novacheck
Stephen Sundberg
Ann Van Heest 
Kevin Walker

Surgery, Pediatric
Robert Acton 
Daniel Saltzman

Urology
Sean Elliott
Joel Hutcheson
David Vandersteen
James Wolpert


Rett Syndrome Clinic and Research at Gillette

Posted On: 02/12/2014

Rett syndrome

By Timothy Feyma, M.D. and Arthur Beisang, M.D.

Rett syndrome is a rare genetic disorder that almost always affects females.  It’s associated with widespread developmental delays, epilepsy, scoliosis, and issues with sleep, feeding and movement coordination.

Many children diagnosed with Rett syndrome appear to develop either typically, or somewhat slower than expected, until ages 1 to 4, when they experience a loss of developmental skills. Many patients unfortunately undergo repeated laboratory tests, imaging studies, and medical visits before a diagnosis of Rett syndrome is confirmed. One finding that often leads to diagnosis involves stereotyped hand movements—as though children are repeatedly washing their hands. Children less severely affected may not develop such movements.

Although Rett syndrome no doubt has existed for a long time, as a distinct diagnosis it is rather new. Dr. Andreas Rett first recognized and wrote about the condition in 1966. The gene responsible for the condition wasn’t discovered until 1999. Before that, doctors based diagnoses on their observations of patients who had similar behaviors and symptoms. Since 1999, significant work has gone into identifying the purpose of this gene and considering ideas for treatment. 

Gillette Children's Specialty Healthcare founded our Rett Syndrome Clinic in 2005 in hopes that focusing on this unique group of patients would allow us to better understand the condition and provide help. By partnering with researchers at the University of Minnesota and other locations, we are beginning to understand more. Some of less-discussed effects of Rett syndrome include trouble regulating body temperature, being aware of pain, and sleeping.  We have begun investigating the communication abilities of patients with Rett syndrome in hopes that we can learn more about the thoughts and desires this condition prevents them from clearly expressing.  Beyond characterizing symptoms and treating related Rett syndrome issues, we are working to further collaborate with scientific investigators seeking to treat Rett syndrome and prevent associated symptoms.  Our hope is that some of this research will yield ways to gauge the success of treatments currently under development. As with all research, the pace of discovery can be slow and frustrating, but our hope is to provide not just support for symptoms, but also active treatments for Rett syndrome in years to come.

 

 

Timothy Feyma, M.D., is a pediatric neurologist at Gillette Children's Specialty Healthcare. His professional interests include following neonatal intensive care unit (NICU) babies and seeing patients who have epilepsy, metabolic disorders and movement disorders. After receiving his medical degree from the University of Wisconsin Medical School, Feyma completed a pediatrics residency at Penn State Hershey Medical Center in Hershey, Pa. He then completed a pediatric neurology residency and a fellowship at the University of Washington in Seattle. His professional memberships include the Child Neurology Society and the American Academy of Neurology.

 

 

 

 

Arthur Beisang, M.D., is a pediatrician at Gillette. He sees children who have cerebral palsy, Rett syndrome, and other complex medical conditions. He also works with children whose disabilities result in drooling issues. Beisang received a medical degree from St. George’s School of Medicine in Grenada, West Indies. He completed a residency in pediatrics at the University of Minnesota. Prior to joining Gillette in 2006, Beisang was a pediatrician at Region’s Hospital and an associate professor at the University of Minnesota. He remains an assistant professor of pediatrics at the University of Minnesota. Beisang is certified by the American Board of Pediatrics.

 

 

 

 


Concussions…

Posted On: 02/05/2014

By Angela Sinner, D.O.

A concussion is a mild traumatic brain injury. It’s defined as a traumatically induced disturbance of brain function that is typically temporary.

A concussion happens when someone sustains a hit to the head or a force to the body. By causing the brain and head to move quickly back and forth, it disrupts the balance of chemicals in the brain. Symptoms 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 provider diagnoses the condition.   

Recovery from a concussion involves resting from physical activity—and often from cognitive, or “thinking,” activities, too. Health care providers may administer computerized tests to assess how the brain is healing and follow the patient’s progress. A concussion’s symptoms often resolve within a few weeks.

If you sustain a concussion, it’s very important to sit out of activities that put you at risk for hitting your head again. Time away from sports, gym class or other activities may be necessary. This allows the brain to heal properly. If you sustain a second concussion before healing from a first injury, you are at risk of a more severe concussion and longer-lasting symptoms. You’re also at risk of second impact syndrome. Although second impact syndrome is rare, there are cases in which people received severe brain injuries after a recent concussion.  The reasons are not well understood, but the connection could be severe brain swelling or the loss of the brain’s ability to regulate its blood supply, which could lead to coma or death. 

At Gillette, our team draws on the expertise of health care providers from rehabilitation medicine, neurosurgery, and neurology to carefully assess each injury. If symptoms persist, our therapists, psychologists, and neuropsychologists help with a plan and therapeutic interventions to reduce symptoms while enabling patients to return to school and re-engage in cognitive and physical activities. Our social work team works closely with the school team to smooth the transition. Our team rallies around each student or athlete to support their quickest return to full participation in school and activities.

 

References:

http://www.cdc.gov/Concussion/

Harom, et al.  American Medical Society for Sports Medicine position statement: concussion in sport.  Br J Sports Med (47); 15-26, 2013.

 

 

Angela Sinner, D.O., specializes in pediatric rehabilitation medicine with a special interest in spina bifida, neurotrauma, and spasticity management. She received her doctor of osteopathic medicine degree from Des Moines University’s College of Osteopathic Medicine in Des Moines, Iowa. She completed a physical medicine and rehabilitation residency at the University of Minnesota Medical School in Minneapolis, and then completed specialty training at Gillette Children's Specialty Healthcare through a fellowship in pediatric rehabilitation medicine.

She has made numerous professional presentations on topics including posterior fossa syndrome autonomic dysfunction in severe traumatic brain injury, and spinal cord injury evaluation. Her recent research has focused on intrathecal baclofen pump management as well as hypercalcemia incidence and treatment in spinal cord injury.

 

 

 


Bladder Concerns and Treatments for People Who Have Disabilities

Posted On: 01/29/2014

By Jenna Katorski, F.N.P.

When people have disabilities, they often have trouble with bladder control. Damage to the brain or spinal cord that causes a disability also can affect bladder function. A variety of bladder problems fall under the category of a neurogenic bladder.

Types of Bladder Problems

For the urinary system to work properly, two groups of muscles must coordinate: the bladder (where urine is stored) and the sphincter (muscles around the urethra that prevent urine from leaking). Depending on the nerves involved and nature of the damage, the muscles in someone with a disability might become overactive or underactive. That may cause pressure inside the bladder to increase and places the kidneys at risk.

Underactive bladder: Because the bladder is too relaxed, it doesn’t empty completely during urination. That leftover urine can cause urinary tract infections and give the feeling of having to urinate often.

Overactive bladder: The bladder squeezes (contracts) even when you aren’t trying to urinate. That can cause leakage (urinary incontinence). Otherwise, pressure rising inside the bladder can damage the kidneys.

Underactive sphincter: Because the sphincter is too relaxed, urine can leak even when you aren’t trying to urinate (urinary incontinence).

Overactive sphincter: If the sphincter is too tight, it doesn’t relax enough to let out urine when you want to urinate.

Tests and Treatments

If your healthcare provider suspects that a patient has a neurogenic bladder, they may order imaging tests or a bladder pressure test (urodynamics). Treatments may include behavioral changes, medications, catheterization programs, or surgical procedures.

The main goal of treatment is to maintain low pressure when the bladder fills and empties. That protects the kidneys from damage caused by high pressure in the bladder. Other goals may include decreasing urinary incontinence, minimizing urinary tract infections, and increasing a patient’s independence through a bladder management program.

If you have a neurogenic bladder, be sure to see your urology provider regularly to ensure your kidneys are safe with your current bladder program.

 

 

 

Jenna Katorski, C.N.P., is a family nurse practitioner, who is board-certified through the American Academy of Nurse Practitioners. She works in the physical medicine and rehabilitation department at Gillette Lifetime Specialty Healthcare St. Paul-Phalen Clinic. She cares for adults who have spina bifida, cerebral palsy, traumatic brain injury, or other childhood-onset disabilities. She completed a Bachelor of Science and Master of Science in Nursing at the University of Minnesota in Minneapolis, Minn. She has been a principal investigator or a co-investigator for a number of clinical research studies, made professional presentations, and served on numerous professional and organizational committees. In addition, she is a member of the Society of Urologic Nurses and Associates, Developmental Disabilities Nurses Association and Sigma Theta Tau (an international nursing society).

 


Sleep Technologist Appreciation Week at Gillette Children’s!

Posted On: 10/11/2013

By John Garcia, M.D., Sleep Medicine Specialist

Sleep technologist appreciation week gives everyone an opportunity to celebrate the dedicated service provided by the Gillette Sleep Health technologists. 

Some do not know that four nights a week four technologists are caring for children in the sleep laboratory. During this time the sleep technologist do not take her eyes off the patient. This careful attention allows  for the accumulation of data that is not otherwise easily gathered. It is routine for the Gillette Sleep Health technologists to identify a severe breathing problem or seizure that had been hidden because parents appropriately are not able to stay up all night and gather the data as these trained professionals do.

In addition to providing clinical care Gillette Sleep Health technologists are involved in teaching, policy creation, advocacy, research, and technical applications.  They provide monthly in-service training integrating new technologies in the field.  Two of our group chose to attend the regional policy creation seminar to help begin to alleviate the burden of sleep deprivation on our state's teenagers by advocating for an 8:30 AM high school start time.. The policy and procedure manual integrates recent research into technological applications provided on a nightly basis. These new technologies include average volume assured pressure support, transcutaneous carbon dioxide monitoring and actigraphy to name a few.

The technologists have partnered with almost every clinical subgroup in the hospital here at Gillette including the craniofacial clinic, postoperative nursing group, information technology, and neuromuscular diseases group.  They are involved in ongoing data gathering for research with Rett syndrome, traumatic brain injury, and CPAP mask desensitization.

Together the group of sleep technologist represent over 100 years of total sleep technology experience. Over 1000 children and young adults have been served by the gillette sleep technologist since its inception six years ago. The dedicated service of the Gillette Sleep technologists is appropriately celebrated this week.


I Fit, You Fit, We Fit Together…Advances in Gillette Rehabilitation Therapies

Posted On: 09/17/2013

By Kristin Ries, OTR


Step inside the Gillette rehabilitation therapies gym and you may notice the inclusion of some new technology helping kids to use their muscles to better be able to do the things that kids do best. One of the newest pieces of equipment in the rehab gym is called the ArmeoSpring.

The ArmeoSpring is used as part of a program for Upper Extremity Functional and Intensive Therapy (UFIT), which also includes therapy activities such as constraint induced movement therapy. These types of therapy activities help kids to strengthen their arm muscles in order to improve their ability to use both arms together for everyday kid activities.
 

 

 

 

 

 

 

 

 

 

 

The ArmeoSpring is a computer enhanced therapy activity, which uses a gravity-assisted exoskeleton to support a child’s arm as they move and interact with virtual reality activities on a computer screen. The exoskeleton measures the child’s arm movement and grasp as they are motivated to move and have fun with the interactive games.

Kids with weakness in one or both arms caused by a variety of diagnoses are appropriate to participate in UFIT, including using the ArmeoSpring as part of their therapy program. The occupational therapist working with a child using the ArmeoSpring will be interested to hear what kinds of activities he or she would like to be able to better participate in as they begin the therapy program. Our goal together will be to improve a child's ability to participate in everyday activities...including all things kids do best!

Contact an occupational therapist in the Gillette therapy department at 651-229-3900 to learn more information about UFIT or the ArmeoSpring technology.


What is Neuropalliative Care?

Posted On: 06/24/2013

By Scott Schwantes, M.D.

As a specialty-care pediatric hospital focused on treating children with disabilities, the patients we see at Gillette Children’s Specialty Healthcare have conditions that are complex — and, in many cases, lifelong. That’s why, at Gillette, we focus on interventions that will not only improve our patients’ health, but maintain their enjoyment of life.  Our neuropalliative care team can help families plan and manage the serious symptoms of complex conditions. We’re here to support families as they define goals, and make treatment decisions, for their child.

Palliative care, by definition, describes medical care focused on providing relief from symptoms, discomfort, or stress caused by a serious illness. Traditionally, this has meant supporting patients who have childhood cancer.  But it’s also been estimated that, of the children who could benefit from palliative care services in the U.S., nearly half are living with neurological, degenerative, or genetic conditions — the exact type of patients we see at  Gillette.

At Gillette, we’ve developed our palliative care services to meet the ongoing needs of children who have long-term neurodevelopmental impairments — hence the term neuropalliative care.  Children with a wide variety of medical conditions can benefit. Just a few examples include patients with Rett syndrome and other genetic disorders, neuromuscular conditions, traumatic brain injuries, and cerebral palsy.

It’s important for families to know that neuropalliative care doesn’t mean end-of-life care — though we’re prepared to support families when difficult decisions arise.  It’s ultimately about maximizing our patients’ enjoyment of life and making the most of time spent with family. To learn more about Gillette’s neuropalliative care services, visit our website.

Scott Schwantes, M.D., is a pediatrician board-certified in Hospice and Palliative Medicine. He leads the neuropalliative care consultative team at Gillette Children’s Specialty Healthcare.


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