Program News

Enterovirus D68 (EV-D68) – Illness Precaution

see text equivalent for Enterovirus D68 Infographic: Keep Your Child from  Getting and Spreading Enterovirus D68

Recently the CDC reported an increase in cases of Enterovirus D68 (EV-D68). It presents with mild to severe respiratory or flu-like symptoms, and appears to more severely affect children with asthma based on the reported cases. Enteroviruses in general are most common from summer to early fall. Most hospitals and doctor’s offices cannot test for this specific type of enterovirus, but may send samples to the CDC or state health departments to confirm.

While there is not a lot of information available on the virus, there are ways to prevent spread of the virus. The CDC recommends the following:

  • Wash hands often with soap and water for 20 seconds, especially after changing diapers.
  • Avoid touching eyes, nose and mouth with unwashed hands.
  • Avoid kissing, hugging, and sharing cups or eating utensils with people who are sick.
  • Disinfect frequently touched surfaces, such as toys and doorknobs, especially if someone is sick.

Additional recommendations for neuromuscular patients:

  • Avoid sick individuals period
  • Discuss plans with your school nurse or other contact to remove your child from school if a sick child presents with respiratory symptoms

SMA patients are not more likely to contract the disease than other children, but should your child contract a respiratory illness of any kind, institute your usual respiratory protocol and keep in close contact with your pediatrician. It has been shown to cause more severe respiratory symptoms than a typical enterovirus, which makes our neuromuscular patients more vulnerable.  Refer to the SMA Hospital Admission Guidelines found HERE on our website. We do not recommend removing your child from school if the illness is not present there. Hyper-vigilant hand washing is very important. Be careful about who comes in contact with your child. School & Church are the most common locations that parents send sick children.

**REMINDER: Flu season is here. Parents, children, and any caregivers need to be immunized. Vaccines will likely become available in the next 2-3 weeks (September – October)

Our team took the ALS Ice Bucket Challenge!

Attention: Parents of Children Diagnosed With SMA

Do you have a child with Spinal Muscular Atrophy?

Has your child participated in a clinical trial within the past 10 years?

*Clinical Trial: a study testing potential treatments in humans to examine treatment safety and function.

We invite you to take part in a survey conducted by Families of Spinal Muscular Atrophy (FSMA) and Parent Project Muscular Dystrophy (PPMD). FSMA is collaborating with PPMD to understand how the Spinal Muscular Atrophy community thinks and feels about potential therapeutics and clinical trials.

To participate in the survey you must be a parent or legal guardian of an individual with spinal muscular atrophy (SMA), and your child is participating, or has participated, in a clinical trial in the United States or Canada within the past 10 years.

The Survey is anonymous and takes only 30 minutes to complete.

If you have questions about the study, please contact:

Holly Peay: (443) 791-5927

Hadar Sheffer: (512) 516-4910

Jill Jarecki

Caution: H1N1, Flu Virus Recommendations

Patients, Families, and Friends:

Unfortunately, we have had our first case of the H1N1 virus in one of our SMA patients.

Please be wary of the flu virus and follow our treatment recommendations.
H1N1 is very serious for our SMA patients.

Look for the following symptoms:

  • cough
  • fever
  • sore throat
  • stuffy or runny nose
  • body aches
  • headache
  • chills
  • fatigue

If a patient or family member shows symptoms, contact your Pediatrician immediately. Even if your child and other family members have received the flu shot, it could still be the flu. Testing/Tamiflu are recommended even if you or your child have been immunized.

  • It is urgent that you have a respiratory panel done for all respiratory illnesses.
  • Immediately begin Tamiflu until the test results have been received.
Take everyday preventative actions to protect our patients and families.
  • avoid close contact with sick people.
  • cover nose/mouth with a tissue when coughing/sneezing.
  • wash hands with soap and water.
  • do NOT touch your eyes, nose, or mouth.
  • clean/disinfect objects or surfaces that are of daily use.

The Role of Active Exercise in Neuromuscular Disease

The role of active exercise in spinal muscular atrophy (SMA) is to help the children improve their:

  • Flexibility
  • Function
  • Independence
  • Quality of life

The literature supporting strength training in SMA is limited. Historically, physicians and physical therapists have advised patients with neuromuscular disease (NMD) to avoid physical activity due to the  possibility of overwork and exercise-induced muscle damage.

Because more recent studies have provided evidence that active exercise is safe and potentially beneficial, in both animal models and humans with NMD, it is certainly safe to recommend to children with SMA. Practicing movements and daily tasks that the children normally perform throughout the day is called functional exercise.

Movements or positions that the child is currently performing and would like to strengthen in order to improve their activity in daily life include:  rolling, reaching, sitting , standing, transferring, and walking. These exercises are considered to be functional exercise.  An evaluation of the child and a pertinent home exercise program can be issued by the Physical Therapist and can be updated according to the child’s needs.