A unique Stanford team helps families tackle the financial, logistical, and emotional challenges of caring for their medically complex children.
Posts Tagged with
chronic disease
Claire Dances Into a Bright Future With CF
Claire has cystic fibrosis, but new treatments that attack the disease at the genetic level are helping her live a full life.
Excitement brews around promise of gene editing
Matthew Porteus, MD, PhD, is leading clinical research for CRISPR at Lucile Packard Children’s Hospital and hopes to launch Stanford’s first clinical trial of CRISPR next year.
A weekend workshop shows patients and clinicians a new approach to think about solutions to their everyday issues
Nine clinicians and ten teen patients along with their siblings opted to spend this past weekend trying out some new skills.
Cure is not enough for young cancer survivors
People that survive cancer at a young age are expected to live many decades after diagnosis and treatment, so they are the most vulnerable population to long-term damaging effects from cancer therapy. Stanford’s Karen Effinger, MD, MS, and Michael Link, MD, explore this issue in an editorial published today in JAMA Oncology.
Helping kids with chronic medical conditions make the jump to adult care
Specialists who treat chronically ill adolescents have long recognized the challenges related to this patient population: Young adults may be grown in body, but they aren’t always ready psychologically or socially to take full responsibility for consistently following complicated medical routines and practicing lifestyle restrictions. Nor are most adult care doctors trained in the after-effects of childhood cancer, for instance, or the lifelong need to monitor adults with childhood heart repairs.
Why chronic disease harms kids’ bone development — and what to do about it
Mary Leonard, MD, is trying to make sure children with chronic diseases build as much bone as possible before puberty ends. Once that window closes, she and other researchers believe, it’s too late to do much about it. And the likely consequence of emerging from adolescence with inadequate bone mass is early osteoporosis.
Missing out on “normal”: Advice from an expert on how to help kids with serious illnesses
Children and teenagers with all kinds of chronic and serious conditions want normalcy in their lives, says pediatric psychologist Barbara Sourkes, PhD, who directs the palliative care program at Lucile Packard Children’s Hospital Stanford. Sourkes helps our patients and their families navigate the divide between living with a difficult diagnosis and simply being a kid. Here, she offers advice on how to help children who must “commute” back and forth between the medical world and their everyday lives.
School Nurses Make the Grade
School nurses can certainly help kids feel better. But can they also help kids do better in school? Packard Children’s studied the effects of putting health care back into schools, and found that—not surprisingly—better health leads to better grades.
