Kathi Kinnett's Blog (100)

Imperatives for DUCHENNE MD: A simplified guide to care for Duchenne published in PLOS

Providers care for many people, with many diagnoses – far too many for any one health care provider to be an expert in them all. Any busy provider would find it difficult to have the time to look over a two-volume document like the Care Considerations [PDF], or even a several-page document like the…

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Added by Kathi Kinnett on August 11, 2015 at 9:30am — No Comments

Revised Duchenne Anesthesia Recommendations 2015

Historically, people with Duchenne have been told that using inhaled anesthetics can cause malignant hyperthermia (“MH”; extremely high body temperature), a condition causing rhabdomyolysis (breakdown of skeletal muscle tissue causing the release of myoglobin, a muscle protein that damages the kidneys) and…

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Added by Kathi Kinnett on July 2, 2015 at 10:00am — No Comments

PPMD Listens

PPMD Listens. We have listened to patients, to families, to industry, and to providers. We have listened, and we have acted quickly and effectively, to help to improve your care.

  • In 2012, after listening to what care and services patients and families were not receiving, we convened the first Transforming Duchenne Care meeting.
  • In 2013, after…
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Added by Kathi Kinnett on June 15, 2015 at 12:30pm — No Comments

Alternative Resources for Deflazacort

As many of you know, there has recently been a recall of 2 batches of deflazacort. The recall is specific to deflazacort 30mg, (Marketing Authorisation Holder: Sandoz) and was recently issued by the Spanish Agency of Medicine. The batches that are affected and subject to the recall notification are J021 (expiry 30/06/2017) and J028 (expiry 30/09/2017).



Many families…

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Added by Kathi Kinnett on May 28, 2015 at 12:30pm — 1 Comment

2015 Newly Updated Vaccination Recommendations

As you know, PPMD works very hard to keep you as up to date as possible. Sometimes those updates come very quickly, as has recently happened with recommendations for vaccinations. While we just recently published a new “altered vaccination schedule,” discussions with the Centers for Disease Control and Prevention (CDC) have again updated the recommendations for…

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Added by Kathi Kinnett on May 7, 2015 at 1:30pm — 1 Comment

Orthopedic Complications in Duchenne (Webinar Summary & Recording)

"What is heel cord lengthening?"

"What are AFO's?" 

"How do I know if I am correctly doing stretches with my child?"

"What should I know about scoliosis surgery?"

"My child hates "night boots" – are they really that important?"

These and so many other questions are asked regularly around orthopedic complications in Duchenne.…

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Added by Kathi Kinnett on April 3, 2015 at 12:00pm — No Comments

Recall Notice for Deflazacort 30mg (UPDATED 12/14/15)

[NOTE: This blog has been updated as recently as December 14, 2015. Please see the 'UPDATE 12/14/15' section below for more information.]



UPDATE - 12/14/15: 

There has been new information regarding the March 2015 recall of Deflazacort batches JL21 and JL28. It seems that these batches were…

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Added by Kathi Kinnett on March 12, 2015 at 3:00pm — 4 Comments

Important New Duchenne Steroid Protocol: Download the "PJ Nicholoff Steroid Protocol"

Phillip James “PJ” Nicholoff was a vibrant, 31-year-old man living with Duchenne muscular dystrophy. He had an encyclopedic love of all college and professional sports; he and his family traveled all over the country to catch games. He had a degree in web design and worked his entire adult life. He enjoyed swimming, dating, and driving his own car – much like any…

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Added by Kathi Kinnett on March 2, 2015 at 10:30am — 5 Comments

Important Vaccinations Recommendations

Vaccinations are very, very important to protect us against infection and disease – but they are also very, very confusing. 

Some vaccines are “live,” some are “attenuated (killed),” some protect against viral infections, some protect against bacterial infections, some are…

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Added by Kathi Kinnett on January 23, 2015 at 12:00pm — No Comments

Update on the 2015 Flu

As you may have noticed, despite receiving the 2014-2015 influenza (flu) vaccine, many people have gotten the flu.  It turns out that the vaccine contained inactivated (dead) virus that protected against 3 strains of influenza:

 

  • Influenza B/Massachusetts (2012-like antigen)
  • Influenza A/California (H1N1 – like…
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Added by Kathi Kinnett on January 9, 2015 at 10:28am — 6 Comments

Heart Failure Drugs Slow Deadly Damage in Duchenne, Offering New Hope

In a new study led by Dr. Subha Raman of The Ohio State University Wexner Medical Center, researchers were able to dramatically slow the rate of heart damage in patients with Duchenne muscular dystrophy by using a combination of well-established drugs.…

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Added by Kathi Kinnett on December 29, 2014 at 7:00pm — 1 Comment

Ventilation FAQ Booklet from the DMD Pathfinders

If you were able to listen to the third recording of the pulmonary webinar series (Adult Duchenne Pulmonary Care), you heard Dr. Sheehan mention the publication of a new booklet, “Ventilation and Duchenne” (PDF download) by the DMD Pathfinders.…

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Added by Kathi Kinnett on December 15, 2014 at 11:28am — No Comments

Duchenne Pulmonary Care for Adults (Webinar Summary & Recording)

The lungs require the strength of many muscles to help a person to breathe and cough. As people with Duchenne grow older, the respiratory muscles, like the skeletal muscles, become weaker. Like the heart, every person with Duchenne will have pulmonary issues of some type.

The goal of pulmonary care is to allow both the prevention and management of…

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Added by Kathi Kinnett on December 3, 2014 at 10:14am — No Comments

Duchenne Pulmonary Care for Tweens and Teens (Webinar Summary & Recording)

The lungs require the strength of many muscles to help a person to breathe and cough. As people with Duchenne grow older, the respiratory muscles, like the skeletal muscles, become weaker. Like the heart, every person with Duchenne will have pulmonary issues of some type.

The goal of pulmonary care is to allow both the prevention and management of…

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Added by Kathi Kinnett on November 6, 2014 at 10:00am — No Comments

Enterovirus

Everyone is well aware that we are in the thick of flu season. Recently, PPMD board member, and Duchenne parent, Ellen Wagner, got first-hand experience dealing with the scariness of the enterovirus and rhinovirus when her son Tim fell ill. I asked Ellen to…

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Added by Kathi Kinnett on October 25, 2014 at 11:30am — No Comments

Early Pulmonary Care Webinar Summary & Recording - 9/24/2014

The lungs require the strength of many muscles to help a person to breathe and cough. As people with Duchenne grow older, the respiratory muscles, like the skeletal muscles, become weaker. Like the heart, every person with Duchenne will have pulmonary issues of some type.

The goal of pulmonary care is to allow both the prevention and management of…

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Added by Kathi Kinnett on October 3, 2014 at 9:00am — No Comments

Susie’s Story

In 2013, we brought you the story of Jason and Susie, two courageous patients who had undergone implantation of left ventricular assist devices (LVADs). Sadly, Jason has passed, but Susie continues to thrive. …

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Added by Kathi Kinnett on September 15, 2014 at 10:54am — No Comments

It's Flu Season Again!

Note: Several of you have also asked about the enterovirus, a mild to severe respiratory illness going around now. The CDC has provided helpful information so that you can be aware of the symptoms caused by this…

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Added by Kathi Kinnett on September 15, 2014 at 10:30am — No Comments

The Breath of Life: New 3-Part Pulmonary Webinar Series

The lungs require the strength of many muscles to help a person to breathe and cough. As people with Duchenne grow older, the respiratory muscles, like the skeletal muscles, become weaker. Like the heart, every person with…

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Added by Kathi Kinnett on August 12, 2014 at 9:30am — No Comments

Duchenne Cardiac Working Group Recap

Care of the heart in Duchenne is not a simple business. As a community, we realize:  



  • Prescriptions for cardiac care and surveillance differ widely between both practices and providers.
  • Large gaps exist in cardiac research.
  • While future goals are necessary, we need a plan, for both cardiac care and research, and we need it…
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Added by Kathi Kinnett on July 15, 2014 at 2:30pm — No Comments

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