Fragile X Program
What to do before your appointment
Planning ahead and being prepared helps ease the way and decrease your wait.
Filling out a brief intake form prior to your appointment assists us in making sure that your appointment is as productive as possible. In addition to the intake form, if you are seeing any specialists or therapists outside the Children's Hospital network, we ask that you complete release of records forms so that we may incorporate their services into our evaluation. By doing all this, we are able to tailor your appointment specifically to your needs. There will also be a form for insurance coverage for the testing the Developmental Medicine Center performs as part of their evaluation.
What will the appointment be like?
The length of the visit and the services you receive will depend on what your specific needs are. As part of all visits, the family will meet with:
- A geneticist and a genetic counselor who can answer any questions and provide information about fragile X syndrome.
- Psychologists from the Developmental Medicine Center or Metabolism Program who will perform an evaluation to determine whether there are any additional developmental, behavioral, or educational services that may benefit your child.
- Occupational therapists who will perform an evaluation to determine whether there are specific occupational therapy needs (sensory integration, activities of daily living, etc.) that need to be addressed.
In general, appointments for families new to the program will be scheduled for 8 hours over a 2 day period: 1 hour with Genetics, 1 hour with the Developmental Medicine Center 2-3 hours with psychology and 3 hours with Occupational Therapy.
Should your child have medical concerns, such as seizures, a neurologist is available to discuss testing and treatment. Appointments with Neurology will be scheduled as needed. In addition, a psychopharmacologist is available to discuss the use of medications for the management of behavioral or emotional problems. Referrals to other medical specialists depending on the needs of your child can be made.
How to make an appointment
You can call the clinic coordinator in order to set up an appointment. She will let the scheduler know, who will then contact you. If you have not been to Children's before, your child will need to get a medical record number. In addition, a referral from your pediatrician or specialist will be required. Your clinician can also make a referral to the clinic and the scheduler will contact you to get all the appropriate information.