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HomeClinics, Services & ProgramsA-Z DirectoryDown Syndrome Clinic

Down Syndrome Clinic

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Children, youth and families  Healthcare providers


CHEO’s Down Syndrome Clinic provides care to children and youth with a confirmed diagnosis of Down Syndrome through karyotype testing. Our clinic ensures the medical needs of patients meets the Canadian Down Syndrome Medical Guidelines. Our clinic may also recommend and briefly address certain aspects of developmental, behavioural, and educational issues. 

About our team 

Our team consists of four pediatricians, two nurses and a dietician. 

Information for children, youth, and families 

How can I make an appointment?

All patients must be referred by a physician or nurse practitioner. We will contact you to book an appointment if the referral has been accepted. Please expect up to a 6 month wait prior to your child’s first appointment. 

Before your appointment

Before your Down Syndrome Clinic appointment, the nurse case manager will contact you to review a questionnaire. Your child will also need to have blood work done prior to or on the same day as their appointment with us. 

Please bring these to your appointment: 

  • record of medication and dosage 

  • school reports 

  • therapy reports (i.e., OT, PT, Speech) 

  • health card 

Please sign up for a MyChart account prior to your first visit.  

Our scheduling team will contact you by phone to schedule an appointment.  

If something changes and you need to reschedule your appointment, please tell us at least 24-48 hours (about 2 days) in advance if you cannot make it by calling 613-737-7600 x2352. No shows or frequent cancellations may result in discharge from the service. 

What to expect during your appointment

You will be seen by one of our clinic pediatricians who will discuss any questions or concerns you have. We will update your family physician after the appointment so they can continue to meet all of your child's health and wellness needs.

Our clinic does not provide primary care - please keep in close contact with your regular doctor while being followed by our clinic. 

Who should I contact if I am worried or have questions? 

Call 911 for any emergency.  

  • For patients who are being followed by the Down Syndrome Clinic: For patients who have seen a CHEO Down Syndrome provider, call your nurse case manager or send a direct message to them through MyChart. This is not for urgent calls. Our nurses are here to give support, education and will work to coordinate your child’s care. It may take 3-5 days for us to get back to you (and sometimes longer during holidays). We will return the most serious calls first. Please avoid leaving multiple messages for the same issue.  

  • For patients who are waiting for their first visit with the Down Syndrome Clinic: Please call your family doctor, pediatrician or visit your nearest walk-in clinic. 

Looking for more resources or supports on Down Syndrome? 

Visit our Down Syndrome resources and support page to find helpful websites, local contacts, videos and more. 

Information for healthcare providers

Make a referral

Our clinic is now accepting e-referrals with Ocean!

If you’re already on Ocean, look us up via your account by searching "CHEO".
If you don’t yet have an Ocean account, no problem - signing up is free.

Make a referral in Ocean

You can also continue to submit referrals by faxing a referral form to the clinic using the contact information below.

Referral criteria and eligibility

Referral criteria
Reason for referral Criteria Mandatory information to include in referral Other information
Diagnosis of Down Syndrome Confirmed diagnosis via Karyotype.

Must reside in Ontario.
None None

Other information

Please contact us at the numbers below. Those with a confirmed Down Syndrome diagnosis will be contacted by a Nurse Coordinator. Our coordinator will answer your questions, set up an appointment and refer you to other health and developmental services if needed. 

Contact us

If you have any questions or concerns about your child's health, contact us. These numbers are monitored Monday to Friday from 8:00am-4:00pm. If no one is available to take a call, leave a message that includes your name and your relationship to the patient, the name and date of birth of the patient, the name of the doctor and details on where and when you can be reached. We will get back to you within 3-5 business days. 

Phone and fax numbers 

CHEO Down Syndrome Clinic: 613-737-7600, extension 4105 or 2352 

To reach specific members of the Down Syndrome Clinic team: 

Phone:

  • Nurse coordinator: extension 2825 
  • Dietician: extension 3375  
  • Administrative office: extension 2664 

Fax:

  • 613-738-4878 

Our phone numbers and fax number are not emergency lines. For emergencies, contact your family physician, Telehealth Ontario or 911. 

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