Holland Bloorview Kids Rehabilitation Hospital (HBKRH) in Toronto has a specialized medical clinic dedicated to children and adolescents with typical and atypical Rett syndrome. Clinics are scheduled 9 to 10 times per year on the second Monday of those months.
The clinic provides a multidisciplinary approach with nursing, medical and consultative therapy supports as required at each clinic visit. The team will provide specialized medical guidance and care coordination specific to the diagnosis of Rett Syndrome and supports individuals less than 18 years of age. Genetic identification of Rett Syndrome and a confirmation of clinical diagnosis criteria for typical or atypical Rett Syndrome are required for referral to the clinic. Once these are in place a Physician/Nurse Practitioner referral can be sent to Holland Bloorview utilizing the referral forms online at http://hollandbloorview.ca/programsandservices/Referrals
Team Members Include:
Nancy Campbell; Registered Practical Nurse. Acts as a key contact, support and nurse coordinator to assist families with education, community resources and strength based care.
Erin Brandon; Pediatric Nurse Practitioner. Provides medical consultative support and investigations specific to Rett Syndrome and development. Care coordination to assist with community integration, medical continuity and system navigation.
Dr. Laura McAdam; Pediatrician. Provides medical consultative support and investigations specific to Rett Syndrome and development. Physician and research lead for ongoing clinical development and evidenced based care.
Physiotherapist & Occupational Therapist. Provide consultative support for therapy services, equipment resources and community education/support for Rett Syndrome to maximize individual potential.
What you can expect at your first visit?
At your first visit you will be greeted by the clinic nurse who will complete growth measurements, review medications and review your goals for the clinic assessment with you. You will then meet with the Physician/Nurse Practitioner for a comprehensive overview of medical, development and community goals and supports followed by a physical exam of your child. Should therapy goals or equipment needs be identified you will be connected with one of our occupational therapists or the physiotherapist to provide you with consultative support to meet these needs. The team has a number of physicians and therapists they consult with regularly, including specialists in neurology, psychopharmacology, orthopedics, sleep medicine, cardiology, gastroenterology and augmentative communication. As needs arise referral for consultative and collaborative support can be made. At the end of the appointment you will leave with a printout of recommendations made at the appointment and any educational resources which would be identified as helpful from the assessment. The clinic nurse will provide and review an overview with you at the end of each visit and answer any last minute questions that may arise. Each clinic appointment depending on need lasts between 60-90 minutes in duration and follow-up occurs on an annual basis.
The team will try their best to answer any questions that you may have related to Rett Syndrome during your appointment. Should you forget to ask something or a question should arise outside of clinic hours the nurse and nurse practitioner are available to be reached during regular business hours.
Following each visit you and your doctor will receive a comprehensive overview of the assessment completed in the clinic in the mail or via connect to care within 4-6 weeks. Attached to this is a care plan which summarizes your child’s medical and developmental history to date which is update annually after each appointment. This care plan can be used for emergency visits and new medical appointments to help streamline care and reduce repetition of your journey.