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CHA Family Advocacy Week

Family Advocacy Week: Nemours Patients Share Their Stories

This past year and a half has been tough on all of us, especially our children and youth. For so many, the COVID-19 pandemic has changed life as we know it. But for Nemours patients Kate and Sebastian, the pandemic is just one of many life-changing events they’ve faced. And that’s why they are both sharing their medical journeys to members of Congress during the 2021 Children’s Hospital Association (CHA) “Speak Now for Kids’ Family Advocacy Week,” to increase awareness about the ongoing and essential care provided by children’s hospitals. Kate’s Story When she was just 2 years old, Kate McKinery was diagnosed with optic pathway glioma, a brain tumor that interferes with her optic nerve and impacts her sight. The tumor also causes hormone deficiencies, resulting in abnormal liver function, type 2 diabetes and a full height potential of around 4’2. Kate has undergone multiple procedures, tests and appointments […]

Celebrating Each Moment with Cancer in the Rearview

This blog post is written by Larry, the father of Maddie, a medulloblastoma patient who survived a brain tumor at the age of 2. Larry inspires us by sharing his daughter’s story. “Heroism is endurance for one moment more.”      George F. Kennan In the fall of 2008, at the age of two, our daughter Maddie was diagnosed with medulloblastoma, a brain tumor that arises at the base of the brain and often spreads down through the spine via the spinal fluid. Over the course of the next ten months, Maddie underwent multiple brain and spine surgeries and intense chemotherapy protocols at Nemours/Alfred I. duPont Hospital for Children. After six cycles of chemo treatment, she had made amazing progress, knocking out 90% of her original disease. Because her scans were not completely cancer-free, she then went through an additional six weeks of radiation therapy. Conquering Cancer The effects of radiation on a 3-year-old can […]

Period Poverty and Top Myths about Periods

Period Poverty & Top Myths about Periods

For some individuals, their period is nothing more than a slight inconvenience. However, this is not the reality for everyone. A study by Thinx and the nonprofit Period found that 1 in 5 teens have struggled to afford period products, and more than 4 in 5 teens have missed class or know someone who has had to miss class because they did not have any period products. What is Period Poverty? Period poverty refers to a lack of access to period products, as well as a lack of education surrounding periods. People associate period poverty with poor countries, but even in the United States millions of people suffer due to period poverty. In the U.S., period products aren’t covered by national food stamp programs, and many states still tax them. The COVID-19 pandemic has exacerbated this issue—rates of poverty skyrocketed, making it a struggle to put food on the table, […]

8 Must-Know Tips to Ensure Safe Sleep for Your Baby

8 Must-Know Tips to Ensure Safe Sleep for Your Baby

Much of a baby’s early life is spent sleeping. In fact, many newborns snooze 16 to 17 hours a day! It’s important that sleeping hours be just as safe as those spent awake. Sudden infant death syndrome (SIDS) is a leading cause of death in infants 1 month to 1-year-old. Most of these SIDS deaths occur in the first six months of life. Here are the top tips to keep in mind to ensure that your baby’s sleep environment is as safe as possible. 1. Keep your baby in your bedroom – but not your bed. The American Academy of Pediatrics (AAP) recommends room-sharing (as in bedroom-sharing). This is when an infant sleeps in the same bedroom as their parents (but not the same bed) for at least their first six months. The reason sharing a bed (also called “bed-sharing”) is not recommended is that parents can accidentally roll onto […]

Dynamic Dan!

This blog post is written by Amy, the mother of Dan, a mucopolysaccharidosis (MPS) patient who passed away in 2016 at the age of 19. Amy is a Nemours nurse and her son’s story inspires us and others every day. When Dan was born in September 1996, we were told he was a healthy baby. He joined his sister, Haley, who was 2 years old and we thought our lives were perfect. We had this sweet little family with a precious little girl and strapping baby boy. We had just moved to a new house, both had good jobs, life was good. As Dan developed, he hit all his milestones except for one; he wasn’t talking by the age of 2. He had about 20 ear infections in his first 2 years of life and the pediatrician thought his lack of language was due to him not hearing well. We went to an ENT at […]

Expert Question and Answer

Expert Q&A: Osteogenesis Imperfecta (OI)

Questions about osteogenesis imperfecta (OI), or “brittle bone disease,” are answered by pediatric orthopedics experts at Nemours Children’s Health. Q: When should people with OI get rods in the bones in the legs? A: We view realigning and rodding the bones in the legs, femurs and the tibias as a way to address deformity or bowing that is interfering with each patient’s motor development or causing recurrent fractures. We feel there is no minimum age, this is something that we really do value, continually assessing on an individualized basis to help each patient reach their potential. Q: How would you describe the use of orthotics in patients with OI? A: The word orthotics generally refers to all types of braces or things we put on patients’ arms or legs to help them function better. We use them on a case-by-case basis. Years ago we used to use heavy long leg […]

Expert Question and Answer

Expert Q&A: COVID-19 Vaccine for Kids

In this video, recorded on June 2, 2021, Kenneth Alexander, MD, PhD, Division Chief, Infectious Diseases at Nemours Children’s Hospital, and April Novotny, RN, MSN, CEN, CENP, Chief Nurse Executive and Vice President of Clinical Services at Lakeland Regional Health, share the latest updates on the COVID-19 vaccine for kids, as well as insights on how COVID-19 has been impacting children and what parents can do to help their children have a safe summer and a successful return to school in the fall. Learn more about: How COVID-19 is impacting kids today How to talk with your teen about the COVID-19 vaccine Why your child shouldn’t get the COVID-19 vaccine at the same time as routine vaccines Tips for safely rejoining society after being vaccinated If you have a question for Dr. Alexander, post it in the comments section on Facebook. If my child already had covid, do they still need the […]

Help for Hungry Children - Summer Food Program and School Meals

Help for Hungry Children – Summer Food Program and School Meals

Summer and fun: two words that go hand-in-hand, especially when you’re talking about kids.  However, summer break looks very different for many children. For millions of children from low-income households across the U.S., summer months mean no access to school meals, which may sometimes be the only nutritious food available. And even more children will have less food on their table this year because of the COVID-19 pandemic. For summer 2021 and 2022, the USDA has launched a new summer food program that will help all low-income children of all ages have nutritious meals and snacks. School Meals Help Keep Kids Healthy During the school year, many schools provide students with access to meals through federal school meal programs like the National School Lunch Program and the School Breakfast Program. These programs are run by the U.S. Department of Agriculture and state agencies, who reimburse schools that provide healthy meals […]

All About Animal Therapy

All About Animal Therapy

Besides stealing our hearts by being cute — and in many cases, fluffy — our four-legged friends who are trained as therapy animals have numerous health benefits to offer. Animal assisted therapy is proven to help with both mental and physical conditions. Even healthy people can benefit from animal therapy. Many hospitals offer various animal therapy programs to assist patients in healing. In fact, this is a practice that dates back to the ancient Greeks, who were said to use horses to cheer up patients.   Benefits of Animal Therapy  Animal therapy has physical benefits that include:  Lowering blood pressure  Releasing oxytocin, which has a calming effect   Lessening any physical pain patients have   On top of the physical benefits, animal therapy also has mental health benefits such as:  Decreasing feelings of loneliness and isolation  Lowering stress  Providing a sense of comfort  Nemours Children’s Health System offers animal therapy programs at their hospitals in Delaware and Florida as a part of their commitment to caring for the whole child. One program offered in Florida […]

Keep Your Kids Safe From TikTok "Challenges"

Keep Your Kids Safe From TikTok “Challenges”

Rachel Simon, third-year pediatric resident at Nemours/Alfred I. duPont Hospital for Children, also contributed to this article. Teens’ use of TikTok, the social media app that allows users to watch, create, and share 15- to 30-second videos recorded on cellphones, has escalated during the pandemic. TikTok is now the second most popular downloaded app, after only Instagram. If you ask teenagers what they like to do online, chances are it’s TikTok. Almost half of TikTok users are between ages 16 and 24, and 90% of users engage with the app every day. The content varies widely and ranges from music, dance, exercise, and tutorial videos to humor and parodies. TikTok can get people moving, educated, and laughing. “It’s all good!” however, does not apply to all of TikTok. Here are just a few of TikTok’s dangerous “challenges”: “The Benadryl Challenge” involves individuals taking high doses of diphenhydramine, an over-the-counter allergy […]

Have No Fear, Summer Is Almost Here -And a Little Caution Will Do

Have No Fear, Summer Is Almost Here – And a Little Caution Will Do

Your family may have canceled or shuffled summer plans during the height of the pandemic in 2020, hoping for a more exciting summer this year. So, as vaccination efforts ramp up and more of the U.S. population becomes fully vaccinated, you might be wondering what this summer has in store for your children. Will the family be able to travel? Will unvaccinated children be able to visit their grandparents? What about summer camp? It’s not entirely clear what direction the pandemic will take over the next few months. Experts are recommending we keep our guard up until more is known about how the vaccine efforts stand up against the coronavirus and its new variants. But kids can plan for a great summer, as long as families keep these points in mind: Weigh benefits versus risks.  As a family, try to assess your plans objectively. Flying with unvaccinated kids to a crowded […]

The bridge to a brighter future

The bridge to a brighter future

When Erin Pitts faced spinal surgery as a teen, she never imagined it would impact her life in other ways. Diagnosed with scoliosis at a young age, initially the care plan for the Jacksonville, Fla., resident was to pursue a non-surgical approach to correct the curves in her spine using a back brace. When her complex scoliosis proved resistant to treatment, however, surgery became the best option for long-term results. The experience ended up changing not only her health, but also her career trajectory. Pitts first learned of her condition in the sixth grade, when she began experiencing intense lower back pain. As her condition gradually began limiting her daily activities, her mom made an appointment with her pediatrician. He referred her to Nemours for an orthopedic assessment, where she became a patient of Eric Loveless, MD, department chair of orthopedics at Nemours and a board-certified pediatric surgeon who performs […]

Page 38 of 59

Page 38 of 59

Page 38 of 59