We welcomed 45 participants to our Medical Home Work Group meeting in March. Lauren Lynch, nurse leader at the Parent and Community Engagement Center (PACE) for Springfield Public Schools, was our first speaker. Lauren’s role is to help ensure the health and safety for kids with medical needs. School nurses are incredibly busy with distributing medications, performing sports physicals and handling many complex medical situations. PACE coordinates MASSSTART for Springfield Public Schools, helping to plan for the use of medical technology during the school day.  Lauren took questions regarding access to students’ immunization records and IEPs, especially if they transition from one Springfield school to another Springfield school.

Next, Dr. Irini Salama spoke about the use of sleep medications for special needs kids. Dr. Salama is a Community Pharmacy Resident at Walgreens.  She gave a detailed talk about the need for sleep and recommended non-pharmaceutical methods of encouraging good sleep. There are no FDA-approved medications for children, as all testing is done in adults. If a pediatrician prescribes sleep medication, this is considered “off-label” use.

Testing Drug Safety for Children

In recent years, new laws have been enacted to encourage specific testing for safety and efficacy in children. For instance, in 2012, Congress permanently reauthorized two important programs; the Best Pharmaceuticals for Children Act (BPCA) and the Pediatric Research Equity Act (PREA).

BPCA provides an incentive for drug companies to conduct pediatric studies by granting six additional months of marketing exclusivity.  PREA requires drug companies to study their products in children under certain circumstances.

Prior to implementation of these two programs, more than 80 percent of drugs approved for adults had no pediatric safety and efficacy data in their labels. Today that number has been reduced to about 50 percent.

While progress has been significant, there is still much work to be done. Off-label prescribing will continue to be part of the overall landscape of drug therapy in children until most drugs are adequately studied in children.

http://www.mentalhealth.gov/blog/2014/02/off-label-prescribing-for-children.html

Some parents consider using melatonin as a sleep aid, or use over-the-counter drugs Unisom or Benadryl. Parents are encouraged to talk with their doctors about using any sleep aid.

Lastly, we opened the floor to hear from parents who are juggling the intense needs of their families. Parents talked about establishing a team-based approach to their lives, and the importance of being validated by health care providers. Several parents stated: “I’m not a medical expert, but I’m an expert in my child.”

Parents acknowledged having a tough time asking for help, or letting go when help arrives, but they do understand the importance of their kids developing relationships with other people. Parents value talking to someone else who understands the craziness of their lives. One mother commented that she wants to tell doctors to “stop thinking for a second and just listen.”

Our next meeting will be on Wednesday, April 13 at Shriners Hospital in Springfield, MA.