Preparing for your appointment

It's likely that your family doctor or your child's pediatrician will notice signs and symptoms of progeria during regular checkups. After evaluation, your child may be referred to a medical genetics specialist.

Here's some information to help you prepare for your appointment.

What you can do

To get ready for your appointment, make a list of:

  • Any signs and symptoms your child has been experiencing, and for how long.
  • Your child's key medical information, including recent illnesses, any medical conditions, and the names and dosages of any medications, vitamins, herbs or other supplements.
  • Questions you want to ask the doctor.

Some basic questions to ask the doctor may include:

  • What is likely causing my child's signs and symptoms?
  • Are there any other possible causes?
  • What kinds of tests does my child need?
  • Are treatments available for this condition?
  • What are the complications of this condition?
  • Are my other children or family members at increased risk of this condition?
  • Are there clinical trials underway for which my child may be eligible?
  • Do you recommend that my child see a specialist?
  • How can I find other families who are coping with this condition?

What to expect from your doctor

Your doctor is likely to ask you a number of questions. Be ready to answer them to reserve time to go over points you want to focus on.

  • When did you first notice that something may be wrong?
  • What signs and symptoms have you noticed?
  • Has your child been diagnosed with any notable diseases or conditions? If so, what was the treatment?
  • How is your family coping?
April 27, 2017
References
  1. National Library of Medicine. Hutchinson-Gilford progeria syndrome. Genetics Home Reference. https://ghr.nlm.nih.gov/condition/hutchinson-gilford-progeria-syndrome. Accessed Feb. 1, 2017.
  2. Learning about progeria. National Human Genome Research Institute. https://www.genome.gov/11007255/learning-about-progeria/. Accessed Feb. 1, 2017.
  3. Hutchinson-Gilford progeria. National Organization for Rare Disorders. https://rarediseases.org/rare-diseases/hutchinson-gilford-progeria/. Accessed Feb. 1, 2017.
  4. Progeria (Hutchinson-Gilford syndrome). Merck Manual Professional Version. http://www.merckmanuals.com/professional/pediatrics/miscellaneous-disorders-in-infants-and-children/progeria. Accessed Feb. 1, 2017.
  5. Progeria. National Institutes of Health. https://report.nih.gov/nihfactsheets/viewfactsheet.aspx?csid=59. Accessed Feb. 1, 2017.
  6. Chronic illness and children. American Academy of Child and Adolescent Psychiatry. https://www.aacap.org/AACAP/Families_and_Youth/Facts_for_Families/FFF-Guide/The-Child-With-A-Long-Term-Illness-019.aspx. Accessed Feb. 1, 2017.
  7. Swahari V, et al. Speeding up the clock: The past, present and future of progeria. Development, Growth and Differentiation. 2016;58:116.
  8. The progeria handbook: A guide for families and health care providers of children with progeria. Progeria Research Foundation. http://www.progeriaresearch.org/patient_care.html. Accessed Feb. 1, 2017.
  9. Johnson JN (expert opinion). Mayo Clinic, Rochester, Minn. March 6, 2017.