A 6 minute walk test is a 6 minute walk test, right?
Well, maybe not.
It turns out, there can be many variations of the same test. For example, is it done on carpet? On linoleum? On concrete? Shoes on? Shoes off? Socks on? Socks off? Do you start when the therapist says, “go!” or when the child takes the first step? If there’s a “false start” do…Continue
Added by Kathi Kinnett on July 8, 2014 at 11:30am — No Comments
We don’t know a lot about adults living with Duchenne: their natural history, cardiac progression on and off steroids, on an off cardiac medications, the effects of other medications and/or supplements, endocrine issues, gastrointestinal issues, urologic issues, gaining and maintaining independence……..the list could go on and on. Who would have dreamed that one day we…
Added by Kathi Kinnett on June 16, 2014 at 1:06am — No Comments
Recently, Dr. Lisa Wolf (Assistant Professor, Pulmonary Medicine and Pulmonary and Neurology at Northwestern University, Feinberg School of Medicine, Chicago, IL) gave a wonderful presentation at Duchenne Foundation Australia’s Melbourne Symposium. While her presentation was titled, “DMD Respiratory Review 2014: The Younger Years,” she…Continue
Added by Kathi Kinnett on June 16, 2014 at 12:34am — No Comments
It’s summer – finally! Growing children are hungry children, and hungry children don’t usually go for the healthy snacks first.
As parents, we try everything we can to get them to eat right: reasoning (this sometimes works), bribery (generally referred to as “creative parenting”) and sneaking nutrients into the foods they love (referred to as,…Continue
Added by Kathi Kinnett on June 16, 2014 at 12:30am — No Comments
Unfortunately, the care of people living with Duchenne muscular dystrophy differs from country to country, from state to state, and even from center to center. Email and stories that we get daily confirm that, despite the availability of Care Standards there is still significant practice variability, including centers and locations where clinicians…Continue
Right now, there are more than 10-12,000 young people diagnosed and living in the United States with Duchenne. These young people are being cared for by clinics both near and far. Every one of them deserves the best care and treatment possible. Families want care and treatment to be transparent; they want to know who is delivering care to their child, what comprehensive care looks like, and which centers are delivering that care. For this reason, a group of experts agreed to give families…Continue
We all know that the heart is a muscle too! Most people and parents living with Duchenne feel that care for the heart, as defined by the Care Considerations, is not as current or as aggressive as they would like. In 2009, when the Care Considerations were published, cardiac care was very…Continue
Added by Kathi Kinnett on March 5, 2014 at 1:30pm — No Comments
During my years of clinical practice, I was repeatedly asked, “Is there something that I can feed my child to help slow down, or stop, the effects of Duchenne?” The absolute answer is – we don’t know. But a new article out this week has endeavored to address this question.
As people living with Duchenne age and grow, their muscles are constantly…Continue
No one wants to be sick or go to the Emergency Room unless they absolutely need to. Keeping your lungs clean and your breathing easy will help you to avoid the Emergency Room. Unfortunately, winter is the time for respiratory illnesses and colds. During a respiratory illness/cold, your weak cough can become weaker, making it harder to clear mucus from the…Continue
Day after day, we hear the heartbreak of Duchenne: a 7 year-old boy with the new discovery of decreased function and significant fibrosis, a 9 year-old boy with more than a 10% decrease in function from just 1 year ago, an 11 year-old boy dying from heart failure.
Even if you are doing everything right in terms of caring for your child, cardiac issues…Continue
Added by Kathi Kinnett on November 22, 2013 at 2:04pm — No Comments
The Child Neurology Society Annual Meeting, held in Austin 10/30-11/2, was a busy meeting, packed with interesting sessions and attendees from all of the world. While there was not a lot of late breaking news, it was an excellent opportunity for providers engaging in both clinical care and research to share both practice and clinical results with others in the…Continue
Added by Kathi Kinnett on November 7, 2013 at 10:30am — No Comments
2013 Pediatric Heart Failure Summit
When medical meetings want to present a particular topic, they introduce the topic as a “case study.” A case study is the story of a single person that incudes the topic of interest. While the topic might be of interest to a larger group of people, the case study is an N=1, the discussion of…Continue
Added by Kathi Kinnett on October 21, 2013 at 12:00pm — No Comments
Several poster sessions, as well as the first portion of the Sarepta Symposium, presented by Eugenio Mercuri, MD, PhD (Rome, Italy)…Continue
Added by Kathi Kinnett on October 4, 2013 at 12:59pm — No Comments
Flu season is back and the vaccine is slightly different this year:
The “nasal spray flu vaccine” is a live attenuated vaccine, which contains living, but weakened virus. It is generally not recommended for people with neuromuscular diseases on or off corticosteroids. It is safe for caretakers, siblings and classmates who are…Continue
Obtaining physical therapy (PT) services for individuals with Duchenne and Becker muscular dystrophy, and other conditions for which PT does not result in improvements in range of motion or function, has been a huge source of frustration for patients, parents, and providers.
Added by Kathi Kinnett on August 15, 2013 at 8:00am — No Comments
“Hypertension” is the fancy word for high blood pressure. Blood pressure is the measure of how much pressure it takes the left ventricle of the heart to squeeze the blood out (the top number, or systolic pressure) and the pressure inside the left ventricle of the heart when the heart is relaxed (the bottom number, or diastolic pressure).…
This summer, just prior to the 2013 Annual Connect Conference in Baltimore, a group of 40 parents, advocates, and professionals gathered for two days to discuss the needs, and how best to meet the needs, of individuals living with Duchenne. Historically, Duchenne has been a pediatric diagnosis with no need to discuss adolescent and adult issues – thankfully, those…Continue
Added by Kathi Kinnett on August 8, 2013 at 11:38am — No Comments
The Annual PPMD Connect Conferences have always been a haven for obtaining information around a broad range of topics applicable to the entire Duchenne community. Last year, we hosted a pre-conference meeting to address a single topic of need expressed by providers, parents, and patients alike – discrepancy in the care of people living with…Continue
Added by Kathi Kinnett on June 26, 2013 at 8:30am — No Comments
The question of whether to use a cough assist or vest therapy for airway clearance in patients with Duchenne has come up several times. I connected with Drs. Richard Shell (Nationwide Children’s Hospital, Columbus, Ohio), Hemant Sawnani (Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio), and Jonathan Finder (Children's Hospital of Pittsburgh, Pittsburgh, Pennsylvania) for their expert opinions. Below is a summary of their thoughts.
“The Vest,” or “high…Continue
When a person with Duchenne has general anesthesia, a number of serious problems may arise.
The issue of treating dental cases using local…