Learning about a new diagnosis can be a scary thing for parents. For one South Carolina family, the Prossers, Le Bonheur has offered comfort. Their 14-month-old daughter, Carly, has been treated by Dr. James Wheless and the Neuroscience Institute's care team. Amy, Carly's mom, shared a bit of her Le Bonheur story below.

"Jeremiah 29:11 says 'For I know the plans I have for you, plans to prosper you and not to harm you.  Plans to give you a hope and a future.' 

In January of 2012, our lives were forever changed with the birth of our second daughter, Carly. In June of 2012 she was diagnosed with cortical blindness. Two months after her initial diagnosis, she began having infantile spasms, a type of seizure. 

This past January we found Le Bonheur and Dr. James Wheless, co-director of Le Bonheur’s Neuroscience Institute and professor and chief of Pediatric Neurology at the University of Tennessee Health Science Center. We are so thankful and grateful for Le Bonheur and its amazing staff as they walk this journey with us and help to prepare us for God's plan for Carly and our family's future.  Carly has been admitted to the Epilepsy Monitoring Unit (EMU) at Le Bonheur three times now; here, we have made countless friends and met some of the most courageous families walking a similar journey of their own. The kindness of strangers has been truly amazing. 

As a nurse myself, I have never met such a compassionate and caring medical team. We have had many tests and procedures during our hospital stays and have encountered exceptional people in every department. We live in South Carolina and will continue to travel to Le Bonheur for Carly's care. We are so thankful for our Carly and the impact she is already having on our family and so many others. This is an incredibly special place that feels more like home every time we return. Le Bonheur truly loves their children.  Thank you for loving Carly and giving us hope and a future."

In support of Epilepsy Awareness Month, we asked Jessica Kellough, child life specialist for Le Bonheur’s Epilepsy Monitoring Unit (EMU), to talk some about what she does to help patients with the disease.

What is your role in the EMU?
As the child life specialist for the EMU, my job is to help reduce stress and anxiety for patients and their families while in the hospital.  I try to make sure patients and families understand why they are at the hospital and what their doctors have planned for them.  Working with the patients and their families, I create a plan to help them cope with procedures such as blood draw, MRI and having EEG leads placed (which monitor their seizure activity).  Play is an important part of every child's life, so I also try to encourage play and fun activities to make the hospital seem more like home. 

Why do patients come to the EMU? What’s a day like for them there?
Patients come to the EMU to be monitored for seizures or seizure-like activity.  The ultimate goal is for their seizures to be reduced or eliminated, if possible.  While in the EMU, patients may undergo a battery of tests to help their doctor determine the best plan of care for them.  

EMU admissions are typically planned admissions through the patient’s neurologist.  On the day of admission, the majority of patients will have a MRI, blood draw and EEG lead placement.  The first day is usually a very busy day.  From there, their doctor may order additional tests.  Each patient is different and will have a different plan while in the hospital.  While admitted to EMU for video EEG monitoring, patients have to stay in their room or the EMU playroom (where they are monitored wirelessly) unless cleared by their doctor.  Patients are encouraged to participate in activities in the EMU playroom to promote socialization and play.

How can kids with epilepsy explain the disease to their friends? What do their friends or loved ones need to know?
If someone has epilepsy, it is important to make sure those around you know what is special about you and how to take care of you if you were to begin having a seizure.  Talking with friends or teachers can be scary and overwhelming.  Keep it simple and only share what information you feel comfortable sharing.  Make sure those around you understand what a seizure is and that it is not something that is contagious (you can catch). 

Here is how I explain seizures: Your brain sends messages that tell your body what to do.  Sometimes those messages get mixed up, and your body does things that you have no control over.  Once people understand what a seizure is, they need to know how to keep you safe.  Let them know what your seizures look like and what to do if you begin to seize.  Not everyone has the same kind of seizure.  If someone has a seizure where they fall down and shake, friends help them stay safe by moving things out of the way, turning them on their side and placing something soft under their head.  Never attempt to put something in their mouth.  It is always a good idea to find a grown-up and let them know if someone is having a seizure. 

What is Le Bonheur's new support group for epilepsy families?
Epilepsy Partners is a partnership between Le Bonheur Children's Neuroscience Institute and families who have a child living with epilepsy.  Our hope is that the families involved with this group will be able to connect and share their experiences with other families who have a child with epilepsy.  In observance of National Epilepsy Awareness Month, our initial meeting will take place Thursday, Nov. 15 at 6 p.m. in the Neurology Clinic Waiting Area on the Hospital's Lobby Level.  For more information, feel free to contact me at jessica.kellough@lebonheur.org. 

In yesterday’s Commercial Appeal, a Memphis teen was featured after she volunteered at Le Bonheur Children’s Hospital during the Thanksgiving holiday to cheer up patients. Erin Aulfinger, a former Le Bonheur patient herself, said in the article “Being on the receiving end of help feels good, but is different. It makes me want to help others even more.”

In 2010 at the age of 14, Erin collapsed in her home from a seizure as she and her brother were playing a video game. She was taken to Le Bonheur where within hours, Pediatric Neurologist Dr. Namrata Shah diagnosed her with juvenile myoclonic epilepsy. Since the diagnosis, Erin has relied on friends, family, music and helping others as her way of “owning her twitch” - which is how she jokingly describes it on her Facebook page.

The article goes on to talk about Erin’s volunteer work at Le Bonheur and how her family members, friends and school teachers have adjusted their lives also to deal with her epilepsy. 

Read the entire article here.

Last November, Le Bonheur ran a series of blog posts on epilepsy and the Neuroscience Center housed at the hospital. Check it out here.

At Le Bonheur Children's Hospital, speaking on behalf of our area’s kids in the public policy arena is part of our mission. We make sure that our kids’ needs and concerns are heard when important decisions are made.

The Casey family of Cordova, Tenn., believes in the power of advocacy. In fact, they’re in Washington D.C. today for Family Advocacy Day – an annual event hosted by the National Association of Children’s Hospitals. In D.C., they get a chance to tell lawmakers on Capitol Hill why children’s health care is so important. In particular, the Caseys will be talking about CoverKids, a state Children's Health Insurance Program (CHIP) that provides affordable, comprehensive health coverage for qualifying children 18 and younger.

The Caseys’ know how important accessible health care is for kids because of their experiences with son Shane. Now 5, Shane was diagnosed with infantile spasms, a rare form of epilepsy, as an infant. He was a healthy baby until – at age 4 months – he began convulsing violently. His seizures became worse and more frequent, and sometimes he would lose consciousness. Once diagnosed by a neurologist at Le Bonheur, Shane was prescribed drug therapy to calm his seizures. He’s seizure free now.

“This is why our family gladly advocates for children’s health issues for the entire Mid-South. Too many miracles have taken place within Le Bonheur for us to sit quietly,” said Tiffany, Shane’s mom.

For the Caseys, affordable health coverage is an important issue and one they plan to take to Capitol Hill. CoverKids helped Shane get the treatment he needed in the midst of his parents’ job changes.

“After losing our jobs in the throws of this downward economy, we found that private insurance companies would not cover our son due to his pre-existing condition, even though he had been cured and seizure free for two years,” said Tiffany. "That was when I found out about the reasonable monthly premium cost for Tennessee's CoverKids program.” 

You don’t have to go to Washington D.C. to advocate for kids, says Tiffany. You don’t even have to have had a hospital experience. Kids need adults to speak up for them when it comes to public policy issues.

Here’s how you can be an advocate for kids:

• Write a letter to your elected officials. Here’s a great resource for finding out who your elected officials are and how to reach them.
• Stay up-to-date on the latest policies affecting kids’ health and well-being. Just being knowledgeable is important. You can check out the National Association of Children's Hospitals website for the latest public policy issues.
• Join Le Bonheur’s Grassroots Network. Through the network, you will receive updates on the latest public issues and learn of ways to help.
• Use personal examples in your advocacy efforts.

Because June 5-11 is nationally recognized as Headache Awareness Week, we asked nurse practitioner Dona Clarin, MSN, FNP, to answer some of parents’ most common questions regarding headaches in children. Clarin, who works in Le Bonheur’s Neuroscience Institute, sees several patients who complain of headaches each year.

What are the most common causes of headaches in children?
Headaches are common. In fact, 25 percent of children will complain of a significant headache by age 7 years old.  Seventy-five percent of children will complain of a headache by the age of 15.  Most headaches are a genetic predisposition activated by an environmental trigger, such as stress, noise or smells. Headaches can “run in a family.”

What can parents do to treat their child’s headache?
The common initial treatment would be Tylenol (acetaminophen) or Advil (ibuprofen), but parents should be careful not to use these medications more than one to two times a week, or the child could get a "rebound" headache, a headache caused by frequent use of headache medication.

Parents should also look at various lifestyle components that could help reduce the frequency and intensity of headaches. Make the child has good eating and sleep habits, and try to decrease sugar and caffeine intake. Children should also get regular exercise.

When should parents seek medical care for their child’s headaches?
Children should see a doctor if the headaches are becoming more intense or occurring frequently (at least one time a week). They should also seek care if the headaches are disrupting their life or schooling. It’s best to see a clinician who specializes in neurology.

Here are some other factors to watch for:

• The child has a sudden headache that is worsening in severity or increasing in frequency.
• The child experiences a change in the pattern of the headache.
• New symptoms arise after the headache has subsided.

If any of the above symptoms arise, take your child to his or her pediatrician or to a pediatric neurologist.  Find a pediatric specialist at Le Bonheur.

In place of our weekly “How To Tuesday” post, we have an important and exciting announcement to make. Le Bonheur Children’s has been named to the Best Children’s Hospitals list by U.S. News & World Report. 

Released today, the list names the nation’s top 50 children’s hospitals in 10 specialties. Le Bonheur ranked in four areas:

Neurology and Neurosurgery: No. 25
Orthopedics: No. 32
Nephrology: No. 37
Cardiology and Heart Surgery: No. 46

The U.S. News & World Report rankings allow us to take an in-depth look into how we care for children and give us a roadmap for what being "best" means.

What does this mean for you as a parent?
Our community’s children’s hospital has received national recognition and is considered one of the best in the country.

"U.S. News & World Report ranks children's hospitals based on their quality of care and recognition by physican peers around the country,” said James Beaty, MD, a pediatric orthopedic surgeon at Le Bonheur and Campbell Clinic Orthopaedics. “Families today are searching for the highest quality care for their children.  We at Le Bonheur are proud to be recognized and will continue to provide the most sophisticated care.”

If you’re looking for the best care for your child, rest assured that Le Bonheur will provide just that – nothing less than the best for our area’s kids.