Sep 20

6-year-old Noble needs CHIP

Noble, 6 years old, is described as “an old soul,” and a patient child that displays great joy. Since birth, Noble has always done his best and tried his hardest to overcome all the difficult things life has tossed his way. At just 3 days old, Noble was diagnosed with Prader-Willi Syndrome (PWS) after being taken to the neonatal intensive care unit.

His mom, Crystal, describes how she and his dad, Jameson, were “devastated” when they were told of the diagnosis.

Sep 19

Meet Kaylyn: Cancer Survivor

On March 11, 2014 my world changed when I heard the words “your daughter has cancer,” and I joined a club no parent wants to be in.

Kaylyn was a healthy baby and at 16 months of age she had reached all customary milestones including crawling and walking. But one day she stopped walking. Doctors thought it may be due to a double ear infection. Ear infections were common for her so we didn't think much of it. But as the days went on, she became sicker.

Sep 17

Take a walk on the wild side: the impact of smart technology on our teens Pt. 2

Yesterday, Dr. Raffalli described the connection between smart technology and cyber bullying. Today, he looks at how adults can work with both the victim and bully to help stop the cycle.


By: Peter C. Raffalli, MD, FAAP

But what of the bully? Pediatricians will encounter both bully and victim in their practices. Bullies have been shown to have a significantly increased risk for both psychological and legal problems later in life (Englander, 2013; Olweus, 1993; Nansel, Overpeck, Pilla, Ruan, Simmons-Morton, Scheidt, 2001; Turcotte-Bennedict, 2015; Radliff, Wheaton, Robinson, Morris, 2012). Both victim and bully are developing children/teens and a doctor’s approach should be more therapeutic than punitive. In other words, we want to help the bully; parents will look to the pediatrician for guidance when their child is accused of bullying behavior. In order to help, a physician must first understand why a child might decide to bully. It is interesting to note that many bullies do not realize that what they are doing actually qualifies as bullying. Often they are upset or angry and feel that they are retaliating for an annoyance or even frank injustice done to them. They may, for example, have difficulty understanding that a high functioning autistic child’s disregard for personal space or other problems with self-regulation isn’t meant as an intrusion (Raffalli, 2015; Sania, Jaffey, Bowes, 2012; Sterzing, Shattuck, Navendorf, Wagner, Cooper, 2012). Sometimes, bullying starts as what is perceived as a joke by the bully, not realizing the damage that that joke is doing emotionally to the recipient. Child rearing issues, including lack of warmth and support at home and/or overly permissive parenting with regard to a child’s aggressive behavior, have been shown to be associated with risk for development of bullying behavior in children (Olweus, 1993).

It must be remembered that, when the definition of bullying is met, bullying is abuse of a child or teen, and abuse is never the victim’s fault. There will often be attempts by the bully or even the school to blame the victim. Bullies will often claim that the victim “deserves it.” It is not uncommon for a school official to tell the parent of a bullying victim that the child is a target because of his/her shortcomings. The mother of an ADHD child who is being bullied might, for example, be told by the principal, “Well, you know, he is annoying.” This is unacceptable and points to the continued need for education of all school staff, not only in bullying prevention, detection and intervention, but also to some degree in victimology, at least as it applies to pediatric peer victimization.

Sep 16

Take a walk on the wild side: the impact of smart technology on our teens

By: Peter C. Raffalli, MD, FAAP

 

In 1972, Lou Reed released his album Transformer, the fifth track of which was the debut of the song Take a Walk on the Wild Side, one of, if not the most iconic of Reed’s immense catalogue of work. It was raw and unconventional, a departure from the style and prosody of the rock that had come before. Young people, particularly teens, are attracted to the raw and unconventional. It fulfills a need in them for departure from the dependent years of their childhood — when their parents’ experiences and values dominated — toward something all their own. Of course, an element of danger is usually considered necessary on the part of the teen. Rock and roll and the culture that came with it would transform not only music, but generations of young people through the sixties, seventies and eighties.

With the inception of the internet, we humans have created another dimension — one in which some people dwell without break for extended periods of time. And, like the streets and scenes that Reed described on his jaunt through New York City in the early seventies, there are places in the internet where our teens travel secretively that certainly contain the same themes of sex, gender identity, race, drugs, violence and coercion conjured in Take a Walk on the Wild Side. If we who care and advocate for children are to help our patients and their parents navigate this brave new world, we too need to take a walk there if we are going to have any hope of relating to what they are going through. A review of the various ways the internet and smart technology has impacted our kids will be presented in the paragraphs that follow.

Sep 13

What's Up Wednesday -- Cole

#WhatsUpWednesday is our chance to hear from the teens who are involved with the Speak Now for Kids community. This week’s post will focus on Cole, a former patient at Johns Hopkins All Childrens Hospital in St. Petersburg, FL. Just two weeks shy of his 16th birthday, Cole has been a super advocate for children battling cancer by meeting with members of Congress to share his story and even helping to raise money for a teen lounge at the hospital. As you can see, Cole is a very busy teenager, so while we have him:

Cole…what’s up?

Sep 06

What's Up Wednesday -- Khalil

#WhatsUpWednesday is our chance to hear from the teens and young adults who are involved with the Speak Now for Kids community. This week’s post will focus on 22-year-old Khalil. You may remember Khalil from his participation in this year’s Speak Now for Kids Family Advocacy Day.

So Khalil......what’s up?

Sep 01

The Time is Now to #StopBullying

According to the National Center for Educational Statistics, one out of every four students reports being bullied during the school year. Out of that quarter, though, only 36 percent actually report their ordeal to an adult. While bullying incidents may seem brief or like “kids being kids”, students who are bullied are much more likely to experience mental health issues than their peers. To help combat this serious problem, children’s hospitals and other partner organizations are providing a myriad of resources for parents, teachers and teens.

Aug 29

WAVE Camp – Because every child deserves a trip to the shore

  August_2017_WAVE_Camp_photo.jpg  

Happy Campers - Ashawn and Messiah catch some rays at WAVE Camp

Watching waves scatter while strolling up the boardwalk and enjoying the goodies from food vendors is a time-honored tradition of the Jersey Shore.  Voorhees Pediatric Facility (VPF) is ensuring that this wonderful experience is extended to those who would normally miss out on this tradition. Through its New Jersey WAVE (Wonderful Adolescent Ventilator Excursion) Camp, VPF takes kids on mechanical ventilation out of the hospital, nursing facilities and homes to give them a chance for a vacation at the shore. Some of the medically fragile 8-to 18-year-old campers have never even been too far from home, let alone to the shore, and are overjoyed with the three-day vacation the WAVE program provides.  Any child with a stable medical condition will be considered for the WAVE program: children with neuromuscular disease, lung disease, hearing or visual impairment etc.  Many campers have a myriad of equipment that usually limits their mobility, such as medical ventilation, tracheostomy tubes, feeding tubes and wheelchairs. An experienced team of nurses, respiratory therapists and doctors, including a pediatric pulmonologist, staff the camp 24-hours a day.

VPF and its sister company Weisman Children’s Rehabilitation Hospital have supported the WAVE camp since its inception in 1998— both an extension of their missions to advance the potential of medically fragile children and as a way to give back to their community. Supplemented with outside donations, the program is free of charge for those attending. 

Aug 14

Medicaid Matters to Kids Mondays: Sophia is defying the odds!

“Through years of hard work, determination, and the support of doctors, therapists, friends, and family, Sophia continues to gratify and amaze us with all that she can do,” says mom, Alicia.  

Diagnosed with cerebral palsy, right hemiplegia, and global developmental delay, all before the age of one, it was unknown if she would ever walk, talk or meet other developmental and cognitive milestones. 

A team of specialists ranging from neurology to hematology, physical, occupational, and speech therapists, gastroenterologists, ophthalmologists, audiologists, and physiatrists from both Blank Children’s Hospital in Des Moines, Iowa and Gillette Children’s Specialty Healthcare in Minneapolis, Minn. ensured the very best care for Sophia.

Aug 07

Medicaid Matters to Kids Mondays: Meet Lizzie

Six-year-old Lizzie loves ballet, singing and playing with her little sister and friends. Resilient and determined Lizzie lives with a number of congenital conditions, including the congenital heart defect, transposition of the great arteries, profound hearing loss and pulmonary stenosis. Lizzie had her first open heart surgery when she was only five-days-old and had cochlear implant surgery at age one.

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