NEW Quick Resource Cards

PMSF Releases the first in a series of Quick Resource Cards

by Diane Linnehan, Director of Operations and Jenn Carter, Mom to Sloane

We are pleased to introduce our new “Quick Resource” NeuroPSYCH card! This is the first in a planned set of printable and digital resource cards that are designed to help families quickly access resources that can be helpful in the care of their child.

The NeuroPSYCH card and link page may be shared with medical and care providers to help inform care decisions if an individual with PMS is experiencing neuropsychiatric symptoms. It makes critical information easily accessible in an emergency situation and can be helpful to link information to your child’s medical record for future reference.

These resource links provide the most current information from the PMSF medical advisory committee (MAC) and the PMS Neuropsychiatric Consultation Group (PMS-NCG) and they are updated as new information is released.

The main QR code opens a landing page with an introduction video by Dr. Alex Kolevzon, chair of the PMS_NCG and PMSF MAC, and a series of links to pharmacological guidelines, medical advisory letters, consultation requests and additional resources.

It is important to remember that not all individuals diagnosed with Phelan-McDermid syndrome experience neuropsychiatric conditions and many of those who do have responded to treatment.

The cards are accessible in various formats and can be shared digitally or in print so the information can be shared digitally or in print. They can be uploaded to a medical file or shared with caregivers.

The cards were created at the request of and with input from parents whose child/adult with PMS has experienced neuropsychiatric regression. In the words of one Phelan-McDermid mom:

“My family is very excited about the release of a PMS specific Neuropsych QR code card. My daughter had a long stretch of neuropsychiatric symptoms (crying, agitation, anxiety, depression) which led to marked confusion and loss of skills. Upon being admitted to the hospital, I quickly realized no one knew how to move forward with treatment.

A QR code leading the medical providers to information about neuropsychiatric conditions within our PMS community would have been invaluable to us during this acute medical crisis. I hope that families will use the printable cards and keep the QR codes on hand so that if they end up in a similar situation they will have resources in hand to get medical teams moving towards proper treatment plans.”

Be sure to bookmark the new Quick Resource page linked below! This is where additional cards will be added in the future: https://pmsf.org/quick-resources. Use the buttons below to access the cards.

If you have ideas for additional resource cards, contact Diane at diane@pmsf.org