Inside Gillette Blog


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.


How you can benefit from the Gillette Assistance Program

Posted On: 11/11/2014

What is the Gillette Assistance Program (GAP)?
The Gillette Assistance Program (GAP) is a program to help Gillette patients and families who are struggling to pay for their medical expenses. Although most people have insurance coverage these days, many plans require families to pay high deductibles or large coinsurance portions. 

 

For qualified patients, GAP can assist in paying the self-pay portions of their Gillette bill. The program has been in place at Gillette for many years under a variety of names.

 

Who qualifies for GAP?

Family size and income determine who qualifies for GAP. Discounts can be from 25 percent to 100 percent of balances for uninsured people (self-payers). We ask that our patients and families apply for state and/or government assistance before receiving GAP assistance.  Government programs also are likely to cover services at other health care organizations; GAP funds can only be used for care received at Gillette.

 

How do I apply for GAP?
Applying for GAP is straightforward and easy. Our GAP application is available (in both English and Spanish) on Gillette’s website at www.gillettechildrens.org/GAP. The GAP application forms are also available at each Gillette clinic site. Just ask a social worker or someone at the front desk for an application also.

 

Gillette has a long history of serving people who have special needs and of giving back to the community.  We are proud to be able to offer the GAP to help our patients and their families cover the costs of highly specialized medical care. 


If you have questions about GAP and would like more information or an application, please call 651-325-2177. Gillette’s Patient Accounting team will be happy to help you.


Celebrate Health Literacy Month

Posted On: 10/21/2014

October is Health Literacy Month, and Gillette is celebrating the efforts of staff who deliver health information to you!

What is health literacy? Here at Gillette Children's Specialty Healtchare, we like the Minnesota Health Literacy Partnership’s definition: A patient’s ability to obtain, understand and act on health information andThe capacity of health care providers and health care systems to communicate clearly, educate about health, and empower patients.

According to the Partnership, “this means that a health-literate individual is one who can access and use health information effectively, and that a health-literate provider is one who can deliver health information to patients effectively. The bottom line: Communication is a two-way street requiring an empowered patient and an empowering provider.”

At Gillette, content experts review our patient education materials to ensure you receive up-to-date information. We strive to use language that makes sense to you. We encourage lots of questions. And we use the teach-back method to make sure you understand the education we provide.

Each of us has a unique learning style. Some of us learn best by hearing information; others prefer reading information; and others need hands-on practice to fully understand a new process. When we use teach-back to support your learning, a doctor might explain a new treatment, followed by a nurse asking, “What do you understand about the plan for your child?” A social worker might give you a handout about available services, then ask which ones you’re interested in. An Assistive Technology orthotics specialist might demonstrate how to apply a brace, then ask you to try the process on your own. No matter what your learning style is, we’re here to provide information in a way that works well for you.

Happy Health Literacy Month! Let’s keep working together to make sure we communicate clearly with you, so you receive and understand health care information that’s important to your family!


How to Make Your St. Paul Clinic Visit Easier: Part Two

Posted On: 10/01/2014

Click here to read Part One: Arriving at Gillette Children’s Specialty Healthcare.

Part 2: Entertainment and Information at Gillette's St. Paul Campus

By: Gillette’s Family Council

Gillette’s Family Council includes parents and caregivers of Gillette patients. We help Gillette promote patient and family-centered care and offer our perspectives on programs, departments, publications and projects. In short, we represent Gillette families! Through our experiences, we’ve learned a lot about making your time at Gillette as easy as possible—and we’re happy to share our top findings with you.

Find Entertainment and Information

You don’t have to stay in the waiting room when you visit Gillette's St. Paul Clinic. Here are some options.

  • Get Outside: The Peggy King Healing Garden is a great outdoor play area, right across the skyway (on the left). On nice days, it’s the perfect place to burn off energy between appointments. Get an access badge at Health Resources and Education or Information. (If your child is an inpatient, ask at your nursing station.)
  • Learn More: You can check out books, magazines, DVDs and other materials about disabilities and related issues from Health Resources and Education. Resources come in a variety of languages. You can also learn about Family Voices, Parent to Parent and other organizations that help connect families of children who have complex medical conditions.
  • Get Charged: Cell phone running low? Health Resources and Education will lend you a charger.
  • Unexpected Problem?  Health Resources and Education also has emergency supplies of diapers, formula, sippy cups, pacifiers, and needle and thread.
  • Visit Gillette on Social Media: Gillette is active on Facebook, Twitter, Instagram, Pinterest and YouTube—and wants to connect with you. If you’d like share your story or photos about parenting a child with complex medical needs, contact Bridget Madich at Gillette.

Show the World You Love Gillette!

If you want the world to know how much you appreciate Gillette, stop by Health Resources and Education and buy an “I Love Gillette” T-shirt—or pick up one for you, your family members and your friends! They come in a variety of sizes and colors.

Get Involved With the Family Council!

Gillette is recruiting new Family Council members for 2015. You’ll serve for two years and attend once-a-month evening meetings. If you’d like to volunteer your time and provide Gillette with valuable feedback—or if you just want to learn more—contact Camille Feng at 651-312-3169 or cafeng@gillettechildrens.com.


How to Make Your St. Paul Clinic Visit Easier!

Posted On: 09/22/2014

Part One: Arriving at Gillette Children’s Specialty Healthcare

By: Gillette’s Family Council

Gillette’s Family Council includes parents and caregivers of Gillette patients (members pictured below include Jo Schifsky, Tara Swedberg, Tracy Chipman and Steve Ekeberg.) We help Gillette promote patient and family-centered care and offer our perspectives on programs, departments, publications and projects. In short, we represent Gillette families! Through our experiences, we’ve learned a lot about making your time at Gillette as easy as possible—and we’re happy to share our top findings with you. If you have an appointment at Gillette’s St. Paul Clinic, these tips will help make your visit simpler and more efficient.

Make Parking a Breeze

Did you know you don’t have to waste time searching for a parking place at our St. Paul campus? And you can save money on parking, too!

  • Valet Parking: Stop at valet parking on Level D of the Regions Hospital West Ramp, between 8:30 a.m. and 5:30 p.m. If needed, valets will help you unload and show you to Registration. Then they’ll give you a claim ticket and park your vehicle. When you’re ready to go, they’ll bring your vehicle to you. And it costs the same as parking on your own!
  • Parking Discounts: Speaking of costs, stamp your parking ticket at Information and your parking will be only $3, no matter how many hours you’re here.
  • Frequent Parking Discounts: If your child is an inpatient, or if you’re at Gillette often, you can purchase a packet of five parking tickets for $10. Get them at Health Resources and Education—next to the Ginkgo Café, on the fourth floor near the skyway.

Don’t Carry It; Stow It

Does it feel as if you need another set of hands to keep track of all the items you bring to your appointments? Gillette can help!

  • Coats and Outerwear: Don’t cart your coats, boots and hats to your appointments. Check them free at Information, on the fourth floor of Gillette near Registration.
  • Lockers: Store the things you aren’t using—from snacks to extra clothing to books and other entertainment—in a fourth floor locker during your appointments. Stop at Information if you want to use a locker.

Stay tuned for Part Two: Entertainment and Information next week!

Get Involved With the Family Council!

Gillette is recruiting new Family Council members for 2015. You’ll serve for two years and attend once-a-month evening meetings. If you’d like to volunteer your time and provide Gillette with valuable feedback—or if you just want to learn more—contact Camille Feng at 651-312-3169 or cafeng@gillettechildrens.com.

 


Raising Spinal Cord Injury Awareness in a Kid-Friendly, Interactive Way

Posted On: 09/17/2014

Every 48 minutes, someone in the United States becomes paralyzed because of a spinal cord injury. September marks Spinal Cord Injury Awareness Month—a month focused on raising awareness about the need for better treatments, research and prevention of spinal cord injuries.


Teaching people about spinal cord injuries plays a big part in this month’s efforts to raise awareness about the condition, too. Approximately 200,000 people are living with spinal cord injuries in the United States. There is currently no cure for the paralysis caused by the condition. Depending on the location and severity of their injury, the changes and challenges faced by people who experience spinal cord injuries can range from mild to severe. For many of our spinal cord injury patients—including their family members and friends who are children—understanding how a spinal cord injury affects them or their loved one can be a difficult concept to grasp.


That’s why we’ve created a new interactive educational tool called “Exploring Your Brain and Spinal Cord”. The tool—specifically created with kids in mind—features a learning module all about spinal cord injuries. Kids can interact with and learn about different parts of the spinal column. We explain how certain types of spinal cord injuries affect the body in various ways and provide useful tips for interacting with people who've had spinal cord injuries.


You can try “Exploring Your Brain and Spinal Cord” here or visit Spinal Cord Injury and Related Neurotrauma to learn more about the care and services we provide for spinal cord injury patients at Gillette.


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.

 


What Miracle Treat Day Meant to my Family

Posted On: 08/29/2014

By Melissa Reich

Editor’s Note: Gillette Children’s Specialty Healthcare participated in Children’s Miracle Network Hospitals (CMN Hospitals) Miracle Treat Day on Thursday, August 14. The following is an open letter to the Coon Rapids Dairy Queen by Melissa Reich, Gillette Mom. Her family stoped by to greet staff, share their story and thank them for their donations to Gillette.

Dear DQ Crew,

My family and I would like to say a HUGE thank you for all you did during our Miracle Treat Day visit! My kids had so much fun and my husband and I were blown away by your hospitality. I would like to tell you a little more about my two kiddos that we celebrated with, Olivia and Elijah.

Olivia has Down Syndrome and a complication of that was a disorder called hip sublexation. Olivia spent over a week at Gillette this past January having reconstructive surgery on her left hip. While in the hospital recovering from her surgery, Olivia became quite ill which triggered a major asthma attack. We are so thankful  that we were in the hospital when this happened. I am unsure what Olivia’s outcome would have been if she were at home.

Olivia spent her recovery in a full body cast from chest to ankle for the next seven weeks. She also endured months of physical therapy re-learning how to walk. Unfortunately, this was not her first time in the full body cast and most likely won't be her last. Eventually she will need her right hip repaired..

Elijah was diagnosed with Epilepsy in October of 2013. He has been through a ringer of tests to find the cause of his seizures and the right medication.  Before his diagnosis at Gillette, he was having seizures almost every day. Due to the rarity of his seizure disorder, we had no clue he was even having seizures. Elijah became quite cognitively delayed due to the frequent seizure activity.  I am happy to report that he is doing much better with a new medication and is now starting to talk in full sentences. His brain is getting the rest it needs in order to focus on his development.

Both Olivia and Elijah have had a long and hard road. Their journey isn't over but my family is truly blessed to have an amazing facility like Gillette. We are eternally grateful to them and to amazing supporters such as Dairy Queen.

Thank you from the bottom of our hearts for you’re over the top generosity. We are very grateful for the smiles and laughs you gave our  kids!

The Reich Family; Kevin, Melissa, Cooper, Olivia, Elijah and Chance

 


Making Physical Therapy Fun

Posted On: 08/12/2014

By Katie Wilkins, Physical Therapist

When a child comes to physical therapy at Gillette Children’s Specialty Healthcare, we strive to make it a fun and interactive experience. We want children to try their best, and we work to find activities that they enjoy while strengthening their muscles or learning new skills.

Babies love to play with bright, colorful rattles, balls and musical toys. At all of our clinics we have an abundance of interactive and interesting toys for babies. At times we will ask families to bring in a baby’s favorite toy to make the environment feel more like home. I once had a dad bring in the family’s TV remote control and, as a result, I had the best session working with this particular baby.

 For toddlers and preschoolers, I love to set up obstacle courses. I may have the child start with a wheelbarrow walk, then crawl through a tunnel, jump like a bunny on a mini-trampoline, hop between frog lily pads, practice their balance by stepping over large obstacles, and finish by log rolling up/down an incline mat. When preschoolers or young children are learning to maneuver wheelchairs, I will set up cones with bean bags on top and see if they can navigate through the obstacle course without knocking over the bean bags. Kids have the best imaginations, so the best obstacle courses always contain adventures like going on a picnic, travelling to a princess castle, or visiting the zoo. Creativity and fun are key motivators to young children in therapy. 

Playing outside is always so much fun for kids and a way to show parents activities they can practice more at home. Our Burnsville and St. Paul locations have an outdoor playground. Climbing up ladders and through tunnels is excellent abdominal and leg strengthening. I often practice bike riding outside.  Scavenger hunts outside always include an uphill walk, curbs to climb, and thick grass to tromp through.  Children are often unaware they are strengthening their legs and working on their balance. To the child we may be going on a scavenger hunt, but I can find those teachable moments when the child bends down to pick up a rock to work on strengthening while he/she is squatting.

Adolescents find therapy at Gillette motivating and challenging. At all of our Gillette locations, we have the Wii available to work on balance and strength activities. I often set up cones and agility ladders to simulate soccer, basketball or gym class drills. We will go outside to practice throwing and catching balls, running drills, or walking with a new walker or crutches. I will set up a simulated errand to a grocery store practicing reaching up on shelves and squatting down to put items under the cart.  I often play trivia games or play music while they are exercising on a treadmill, stationary bike or stretching.  I can videotape skills they are learning to help them refine their technique. We strive to create a safe environment for adolescents to practice new skills or return to the activities they enjoy.

 All of our Gillette locations have the equipment, expertise and environment to provide high quality care that is fun and engaging. By providing playful and fun therapy for children of all ages, we are able to help our patients get back to doing what they do best, which is being a kid! 

 

 

 

 


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