Search

The following protocol is given to the parents of MSUD patients who are followed at Children's Hospital of Philadelphia, Philadelphia, PA, U.S.A., as a guide to use when their children are receiving immunizations of any kind (including flu shots), and is printed here with permission. This is presented on this site for educational and informational purposes only, and as a point of discussion with your child's own physician. Please follow the advice of your child's doctor.

This protocol was designed to help prevent or diminish any possible metabolic complications that could arise from giving the vaccines. It should NOT discourage parents from making sure that their child receives all necessary immunizations. It must be borne in mind that the risk to an MSUD child of having metabolic complications after contracting the flu or any of the common childhood diseases is much greater than that of developing metabolic complications from the immunization itself.

Protocol for MSUD Children Receiving Immunizations and/or Flu shots:

  1. Initiate the sick day diet on the day of giving of the vaccine
  2. Do not give vaccine if child is febrile, has ketonuria or seems in any way ill
  3. Continue the sick day diet for 24 hours after giving the vaccine
  4. Contact physician if child manifests lethargy, vomiting, obtundation, ketonuria or strong odor of maple syrup urine disease
  5. Can give Tylenol**, as recommended by physician, for fever or discomfort.
  6. Resume regular diet 24 hous after giving vaccine, assuming no complications


** Note that the recommended medication in the above article is Tylenol (Acetominiophen).  This recommendation is consistent with information reported in the May 2002 edition of the MSUD Family Support Group Newsletter which reads: "Do not give aspirin or over-the-counter medications containing aspirin to children with MSUD. Children with MSUD are very susceptible to a Reyes Syndrome-like illness with the accompanying brain edema. It is very important that children with MSUD do not take aspirin or products containing aspirin. Make it a practice to read the ingredient list on all over-the-counter medications."

Melvin Carruth

This letter is a tribute to my brother Melvin Carruth! We believe he is one of the oldest living African Americans with Maple Syrup Urine Disease.

Read More

NBS-MSUD Connect: Your One-Stop Shop For MSUD Resources

NBS-MSUD Connect was launched as part of the Newborn Screening Connect patient registry (NBS Connect) in 2013 through a partnership between the Department of Human Genetics at Emory University, the Maple Syrup Urine Disease (MSUD) Family Support Group and other key stakeholders.

Read More

Cambrooke Therapeutics

Cambrooke Therapeutics continues to expand its line of delicious and nutritious low protein foods to help improve the lives of individuals with Inborn Errors of Metabolism such as MSUD.

Read More

Updates To Nutrition Management Guidelines

The Nutrition Management Guideline for MSUD was first published in 2014. Since that time, there have been reports of new research and experiences that have prompted updates of the guideline.

Read More

Emory Metabolic Camp 2018 Announcement

Join us June 18-23, 2018 for the 24th Annual Metabolic Camp at Emory University in Atlanta, GA!

Read More

From The Chairman’s Desk

As I sit here reflecting on how much the care and treatment of MSUD has changed over the years, my mind goes back to 1978 when our son Keith was born.

Read More

MSUD Advocacy Report

Medical Nutrition Equity Act

The Medical Nutrition Equity Act (MNEA) would require all private insurance plans (state regulated or self-insured/self-funded) and federal health programs, including Children’s Health Insurance Program, Tricare, Medicaid, Medicare, and Federal Employee Health Benefit Plans, to provide coverage for formula and low-protein foods for all children and adults with MSUD.

Read More

The MSUD Family Support Group Is Excited To Announce Their Participation In The Million Dollar Bike Ride

The MSUD Family Support Group is excited to announce their participation in The Million Dollar Bike Ride

Read More

19th Biennial MSUD Symposium

I can’t believe that almost two years have passed and it is time for another MSUD Symposium! I am especially excited about this conference because I’ve built in extra time for social interaction.

Read More

Transform

A Child's Life

Subscribe to our mailing list

Signup To Our Newsletter Signup with your email address to receive news and updates