The UCLA Multidisciplinary Neuromuscular Clinic was established in 2009-10. Our pediatric clinic meets twice a month. The majority of patients seen are B/DMD. Additional patients with SMA, myotonic dystrophy, congenital muscular dystrophy are seen on select clinic days. The clinic can accommodate 12 patients in a day for multidisciplinary visits. Due to demand, some clinics have more patients especially those who do not need to see all team members on that day. Most B/DMD patients are seen 2 times per year for routine care and more frequently when needed. The appointments are generally scheduled months in advance, but patients can be scheduled on short notice. Physicians available in the multidisciplinary clinic include medical specialists (neurology, genetics, cardiology) - board certified pediatricians, neurologists, neurology fellows (4 per year who rotate in clinic- some fellows are pediatric neurologists or have specialization in physical medicine and rehabilitation (PM&R) in addition to specialty training in neuromuscular disease), and pediatric and adult neurology residents. The clinic is able to serve both adult and pediatric patients and Dr. Shieh is fully credentialed to provide specialist services to both children and adults. Older patients who need fewer of the child related services (i.e. Child-life specialist) are seen in multidisciplinary clinic or on another day depending on insurance coverage and needs. Doctors Nelson and Halnon are both board certified pediatricians who can evaluate for disease or treatment related complications and manage steroid dependent patients in conjunction with primary care physicians. When requested, referrals are made for primary care providers in the pediatric/adult medicine practice at UCLA Santa Monica so that some of the medical home needs can be addressed within a Medi-cal managed care plan at UCLA. Some patients have limited coverage for visits to UCLA- Therefore, some consultations and services are provided at DMD clinic visits for free to the patients (supported by philanthropy- see community engagement below).
Multidisciplinary care is offered and coordinated through the pediatric clinic- Most routine testing is scheduled prior to or on the day of the clinic visit. Some parents prefer to have all the testing completed in one day, while others may prefer to spread it out over time. The clinic visit is typically a long visit. We offer drinks and snacks to patients and families. Our child life specialist goes from room to room offering activities (coloring, videos, and PlayStation) for the patients (or accompanying siblings). Each patient typically sees all team members with each visit, although the duration of each provider visit will vary depending on the needs.
At the end of the clinic, the entire team meets for a post clinic conference. Jenna conducts this meeting. During this conference each patient case is presented and then discussed by all team members. Nurse Jenna Gewirtz takes notes and follows up with each patient/family as directed. During this time all suggestions and concerns are openly discussed and medical, psychosocial, and DME needs are discussed.
Patients receive an after visit summary at the time of the visit. After all encounters are completed (typically a week after the clinic visit) all clinic notes are routed to the PCP and family. Some parents prefer the notes emailed electronically. Patients (or proxies) have access to notes, labs, and appointments in My Chart (patient EMR portal).
We understand clinic visits can be hard for patients and their parents, especially for our younger patients. We now have a dedicated Child Life specialist in clinic to support you and your child during your clinic visits. This person can provide entertainment, distraction, and emotional support if you choose. We have found that parents sometimes need to speak privately with the specialists, and this Child Life person can provide distraction and play time for your child while you speak freely to your child's medical team.
While we keep some snacks and juice boxes on hand and do our best to make your visit as comfortable as possible, we suggest bringing a favorite snack and toy for your child to keep him or her satisfied while in clinic.
We understand that your visit can be lengthy. The Edward D. and Anna Mitchell Family Foundation Dining Commons is located on Level 1 of the Ronald Regan UCLA Medical Center and is open Monday through Friday, 6:30 a.m. to 10 p.m., and on weekends and holidays from 7:30 a.m. to 8 p.m. This is a short-walk from the clinic.
If you are up for a bit longer of a stroll and to visit the UCLA Campus, we recommend the Terrace Food Court in the Ackerman Student Union
We highly recommend the UCLA Tiverton House if you require any lodging. It is a 100 room hotel designed to meet the needs of Ronald Reagan UCLA Medical Center patients and their families in Westwood. Making it possible to be nearby when support and closeness are needed most.
UCLA Tiverton House
(310) 794-0151
900 Tiverton Avenue
Los Angeles, CA 90024-3013
Directions
The Pediatric Neuromuscular Clinic at UCLA is held every first and third Wednesday of the month at 300 Medical Plaza Suite B200.
Schedule/Re-Schedule Appointments:
Call Jenna Gewirtz at (310) 405-9824
Routine Questions/Concerns:
Contact Jenna Gewirtz, RN at (310) 405-9824 or
Jgewirtz@mednet.ucla.edu
(Expect a call back within 24 hours)
Urgent Questions:
Call the UCLA Page Operator at (310) 825-6301 and
ask to speak to any of the following physicians
Dr. Perry Shieh, Dr. Nancy Halnon, Dr. Stanley Nelson
(For a return call within 1 hour)
Emergency: CALL 911
From the San Diego Freeway (405):
From the north, exit Wilshire East; or from the south, exit Wilshire Westwood. At the third traffic light, turn left on Westwood Blvd. Proceed across Le Conte Avenue and at the next light, Medical Plaza Drive, turn left and follow the ramp down to the parking lot below. Additional entrance is found north of Le Conte Avenue on Gayley Avenue, two blocks west of Westwood Plaza.
From Los Angeles International Airport (LAX):
Take the San Diego Freeway northbound to Wilshire Boulevard east, and continue as described above.
From the East via the 10 (Santa Monica Freeway):
Take 10 (Santa Monica Fwy) East to 405 (San Diego Fwy) North, and exit on Wilshire Boulevard east. Continue as described above.
SHORT-TERM PARKING
Daily Single Entry: Parking at Medical Plaza is available for patients visiting the outpatient clinics. Parking fee is a flat rate of $12. Please pay at the pay stations located near garage elevators. (Rates subject to change without notice.)
Daily Single Entry w/Disabled Person's Placard/License Plate: There is a $5 fee for parking if the driver of the vehicle has a valid handicap placard in his or her name. Please ensure that your vehicle displays a valid parking permit at all times.
If you are parking on 200 or 300 Medical Plaza, pay attendant at exit kiosks during business hours (M-F 7am-9pm) or at Ronald Reagan UCLA Medical Center Level P parking cashier 24 hours, 7 days a week. If you are parking on Level 1 of 100 Medical Plaza, please pay on entrance at pay station located near garage elevators.
EXTENDED PARKING
Should you or your visitors require parking over an extended period of time, you may want to consider purchasing a consecutive-day discounted parking permit. For more information, please contact Patient Affairs office at (310) 267-9113 or open the parking information sheet for complete information. Patient Affairs is located on the first floor of 200 Medical Plaza (Peter Morton Medical Building) in Suite 131; hours are 8:00 a.m. to 5:00 p.m. Monday through Friday.