Medical Specialties

Your 22q Clinic Visit

 

Overview of Clinic Visit

Because chromosome 22q11.2 deletion syndrome may be associated with several different symptoms and medical problems, families may need to consult multiple sub-specialists physicians. These include experts in cardiology, craniofacial surgery, ENT, genetics, ophthalmology, speech/feeding therapy, orthodontics, developmental pediatrics, physical and occupational therapy.

The 22q Clinic’s core medical team also consists of a “virtual” medical team with experts in endocrinology, immunology, GI, and psychiatry. All of the members of our team of medical professionals have extensive experience treating children with 22q11.2 deletion syndrome.

Your child will be evaluated by all of our core team members, as well as appropriate virtual team members, during one comprehensive visit.

A report summarizing the recommendations of the team will be created and sent to you and your primary care physician.

Before your appointment:

  1. You/your child must be referred to us by your primary care physician or other specialist. Download the referral form. (PDF)
  2. Please complete our questionnaire to the best of your ability, and mail or fax it to our office.

Address:

22q clinic
Phoenix Children's Hospital
1919 E Thomas Road
​Phoenix 85016

Phone: (602) 933-2252

Fax: (602) 933-2415

  1. In order to make your evaluation as complete and helpful to you as possible it is essential that we have your child’s medical records before your visit. It may take several weeks to receive these records, so please fill and sign the Medical release form and send it us at your earliest convenience.
  2. School Reports – Please bring your child’s most recent school reports. (For children age ≥ 3 years.) If you have the following reports, please provide copies of:
  • Psycho-educational testing evaluation
  • IEP Report

During Your appointment:

Your appointment at the 22q clinic is a full day visit to Phoenix Children's Hospital.

  1. Your morning appointments are in at the Children’s Heart Center, located on the second floor of the main building. After checking in, your child’s first set of evaluations will include:
    1. A cardiology evaluation with an EKG and echocardiogram
    2. A genetics evaluation
    3. A developmental evaluation or psychiatric evaluation (age-appropriate)
    4. Assessments by a physical and an occupational therapist
  2. After the Heart Center visit, you will get a lunch break. You’ll have the opportunity to meet other families attending the 22q Clinic that day, as well as members of the Phoenix 22q Family Support Group. The cafeteria is located on the first floor of the main building.
  3. After lunch, you will go to the Genetics Clinic on the second floor of the main hospital building. During this time, the providers will come to you. Your child will be seen briefly by several other core team members:
    1. A craniofacial plastic surgeon
    2. ENT physician (otolaryngologist)
    3. Speech pathologist
    4. Orthodontist
  4. Once you have met all of the providers, your visit will be complete.

Following Your Appointment

  1. The medical team will then meet to review the medical records, imaging studies and information gathered from your appointments. The team will discuss and formulate the best treatment plan for your child. This plan may include additional tests, imaging studies or medical evaluations by other specialists.
  2. A comprehensive medical-team report will be compiled and sent to both you and your primary care physician.

Frequency of appointments

Most children are evaluated by our team once every one or two years as needed.

This evaluation does not replace your child’s current medical care. It is intended to provide specific recommendations for individuals with 22q11.2 deletion syndrome.

Contact Us

Phone: (602) 933-2252

Fax: (602) 933-2415

Email: 22qclinic@phoenixchildrens.com

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