May 20

Meet Claire: 2018 Family Advocacy Day Champion

Children's_Hospital_of_Michigan_Wyckoff__Claire.jpgClaire is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Claire will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.

Like many 10-year-olds, Claire was an incredibly active kid. In fact, it was while doing a cartwheel that the first signs of Claire’s health problems arose. What initially was thought to be a pulled muscle on her arm led to a diagnosis of arteriovenous malformation (AVM) of the cervical spine.  

AVM is a rare, abnormal tangle of blood vessels in or near the spinal cord that can lead to a host of serious health conditions — including paralysis and loss of bowel or bladder control.

Claire was immediately admitted to the PICU at Children’s Hospital of Michigan, where she eventually had surgery to remove the AVM located in her neck-area along the spine.

May 19

Meet Christian: 2018 Family Advocacy Day Champion

Children's_Specialized_Hospital_Panarese__Christian.jpgChristian is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Christian will share information about his health journey and the importance of children’s health care with members of Congress. Below is his story.

When he and his parents arrived at Children's Specialized Hospital, then 9-month-old Christian had no mobility. He could not swallow, eat, or sit up, and he cried constantly. Unable to hold anything in his right hand and totally without function in his left, Christian was diagnosed with cerebral palsy, hydrocephaly and quadriplegia by 10 months.

But with his parents’ love and the hospital team’s compassionate and dedicated commitment to helping the entire family, Christian began to make progress. His feeding became less challenging and his choking reduced; he developed the skill to hold a sippy cup.

May 18

Meet Charlie: 2018 Family Advocacy Day Champion

Children's_Minnesota_Tietel__Charlie.jpgCharlie is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Charlie will share information about his health journey and the importance of children’s health care with members of Congress. Below is his story.

More than likely, it was mother’s intuition that saved Charlie’s life. Born in August 2015, Charlie’s mother, Shelby, felt like something just wasn’t right with her infant son.

At two-months-old Charlie was diagnosed with two congenital heart conditions — mitral stenosis and mitral regurgitation — and pulmonary hypertension, a type of high blood pressure that affects the arteries the lungs and the right side of the heart.

May 17

Meet Calvin: 2018 Family Advocacy Day Champion

Cincinnati_Children's_Hospital_Medical_Center_Underwood__Calvin.JPGCalvin is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Calvin will share information about his health journey and the importance of children’s health care with members of Congress. Below is his story.

In 2013, Calvin was born with a tracheal esophageal fistula and esophageal atresia — he underwent surgery right after birth. He then spent his first three months of life in the capable hands of NICU staff at Cincinnati Children's Hospital Medical Center (CCHMC).

But at month four, Michael and Brittney were able to take Calvin home for the first time. While they initially welcomed him home as a foster son, at 17 months they were able to proudly declare that Calvin was officially a member of their family forever.

May 16

Meet Ava: 2018 Family Advocacy Day Champion

Mt._Washington_Pediatric_Hospital_Conklin__Ava.jpgAva is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Ava will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.

One word comes to mind when people meet Ava — “joyful.” She charms everyone with her infectious smile and witty jokes. Appreciative of the simple things in life, Ava marvels over every sunset and adores babies and animals. Where you might see a dandelion as a weed, she would likely exclaim, “What a beautiful flower!”

May 15

Meet Donovan: 2018 Family Advocacy Day Champion

Akron_Children's_Hospital_Stringer__Donovan.jpgDonovan is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Donovan will share information about his health journey and the importance of children’s health care with members of Congress. Below is his story.

In 2016, then 7-year-old Donovan was hit by a soccer ball — an experience he reflects on fondly. Though he had shown no symptoms before the incident, he and his family learned that he had a tumor because of that fateful accident.

On Sept. 21, 2016, Donovan was diagnosed with undifferentiated embryonal sarcoma of the liver (UESL), which was growing and causing him a tremendous amount of pain along with significant health issues.

May 14

Meet Abby: 2018 Family Advocacy Day Champion

Wolfson_Children's_Hospital_Jones__Abigail.jpgAbby is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Abby will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.

Pregnancy is often marked by joy and anticipation for a child’s future. Imagine being told that your baby would not survive long after birth, if at all, due to a large brain tumor discovered in utero. That’s what happened to Erika and Stephen Jones when a large tumor was spotted on their baby’s brain during a 30-week ultrasound.

The couple had already been told several weeks earlier that their daughter, Abby, would have Down syndrome, and they had come to terms with the news. But an aggressive tumor thought to be cancerous was something they just could not accept.

May 10

Pediatric Mental Health Should Be Everyone’s Concern

huszti-heather-230x300.jpgMay 10 is Children's Mental Health Awareness Day, and May is Mental Health Month. Today, Heather Huszti, PhD, section chief for pediatric psychology and director of training for the Psychology Training Program at CHOC Children’s in Orange County, Calif., shares why children's mental health should be important to everyone.

Over the past two years, increasing attention has been paid to the mental health crisis that exists in the United States.  It is surprising to many, even in health care, that 1 in 5 children suffers from a diagnosable mental health disorder during their childhood. Even more shocking is that suicide is now the second leading cause of death among 10–14 year olds and 15–24 year olds. Most parents come to their family doctor or pediatrician when their child experiences mental health problems (77% of parents in one study stated that they would first go to their doctor for help). 

Yet, in most places there is not extensive training on how to evaluate for mental health problems or where to refer children when they have mental health issues such as depression. However, identifying and treating children early is a key to helping children live up to their full potential. Over half of all adults with persistent mental illness first experienced symptoms before the age of 14, but many waited over 10 years for a diagnosis and treatment. In addition, pediatric patients with mental health problems and chronic illness have much higher medical care expenditures than do children with one or the other.

May 10

Parenting a Child with Behavioral Concerns

5.10.18.jpgMay 10 is Children's Mental Health Awareness Day, and May is Mental Health Month. Today, Norida Torriente shares her testimonial about parenting a child with behavioral concerns.

As a woman who made a conscious decision to undergo fertility treatments at the age of 42, my doctors ensured that I had access to the latest in genetic testing and the best medical care available to increase my chances for delivering a healthy child. However, no amount of prenatal genetic testing could predict that my daughter, Ilsa, would eventually be diagnosed with attention-deficit/hyperactivity disorder (ADHD).

ADHD is one of the more common neurobehavioral disorders, affecting approximately 11 percent of children ages 4 to 17 in the U.S., according to the Centers for Disease Control and Prevention. Even though it’s so prevalent, many people may not realize the impact it has on a child, other than a propensity towards inattentiveness and impulsivity. When left unchecked, a child with ADHD is more prone to having low self-esteem, difficulties with peer interactions and problems in school and work settings. Anxiety and depression are often comorbidities with ADHD.

May 10

Families Seeking Mental Health Resources Need Compassion and Respect

MichaelWolf.jpgMay 10 is Children's Mental Health Awareness Day, and May is Mental Health Month. Michael Wolf, BSN, RN-BC, a nurse manager for Pediatric Behavioral Health at Wolfson Children’s Hospital, in Jacksonville, Fla., shares why children's mental health is important to him.

It’s distressing for any parent to have their child admitted to the hospital and to turn over control to a medical team they’ve barely met. It’s even more distressing for parents when their child is admitted to an inpatient psychiatric unit because he or she has a mental disorder and is experiencing suicidal thoughts.

My name is Michael Wolf (the kids call me Mr. Mike). I’m the nurse manager for Pediatric Behavioral Health at Wolfson Children’s Hospital in Jacksonville, Florida. We have a 14-bed inpatient psychiatric unit that provides brief acute care hospitalization and crisis stabilization services for children ages 6 to 18 years of age. We also have a partial hospitalization program/intense outpatient program serving up to 10 children, 13 to 18 years of age.

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