We have gathered information to help you make the most of your online telehealth visit for your child (of any age) with Fragile X syndrome. While we focus on visits with a Fragile X clinic (members of the NFXF Fragile X Clinical & Research Consortium) the information also applies to telehealth appointments with a primary care doctor or other health professionals.

Suggestions for Parents

Think about what you want to get out of a visit. Write down your questions and your goals for the visit. Can you accomplish your goals with a telehealth visit, or would an in-person visit better meet your needs?

When you call to make an appointment (find your local Fragile X clinic), you’ll first ask if they do telehealth visits. Some states don’t have a Fragile X clinic, so make sure they can take out-of-state patients. They also may not do telehealth visits for first-time visits. (If you make an in-person appointment, learn more about visiting a Fragile X clinic and how to prepare.)

Next, discuss the goals you identified earlier with the clinic coordinator. Here are some other questions that may apply to your visit:

  • How long is the call?
  • What kind of paperwork (forms) do I need to complete or sign before the appointment, and how do signatures work when filled out online?
  • Do you accept insurance and if so, which ones?
  • What software do I need to have on my computer?
  • Can we practice beforehand to make sure it will work?
  • What is the preferred device, mobile or desktop?
  • Are there any considerations or requirements about where I and my child are located in my home?
  • What kind of information is the doctor looking for?
  • Will you need my child’s height and weight? If a scale isn’t available, is the exact weight required?
  • Will I need to provide a list of current prescription medications, including dosing and frequency?
  • Will I need to provide a list of current supplements?
  • Will the doctor need information related to school or other outside activities?
  • Is there a schedule or checklist of what will be covered during the call?
  • Will you need to see my child during the visit and for how long? 
  • Will I receive follow-up paperwork or recommendations based on the call, and how soon will I receive it?
  • Can I text the doctor directly?
  • Will the call be private (HIPPA compliant)?
  • As a parent, what am I allowed to ask of the doctor?
  • If my child isn’t comfortable, can I request that the doctor not look directly at my child? 
  • Will the doctor be in a secure, private location?
  • If it will help my child’s anxiety, can I provide the doctor with a story or activity about the child that they can ask about during the call? For example, if the child has a favorite sports team, you might suggest the doctor ask them what their favorite sports team is (you might also have your child wear their favorite clothes related to that sport if it helps with their anxiety).
  • Are there any other suggestions to help the visit go smoothly for your child, such as a visual schedule?

Getting Your Child Used to Online Visits

If possible, have someone available to watch your child for part of the visit so you can discuss topics with the doctor and not be interrupted.

If your child refuses to participate, approach it like you would other new experiences and transitions. Break it down into steps and think about each aspect of the experience for potential sensory issues.

This may take some time, so plan ahead to get them comfortable early on. If your child has participated in school online, this process may be quicker, but you will want to see if that comfort translates to a telehealth visit.

One way to prepare is to model the behavior. Start with an online visit with a family member your child is especially fond of. Keep it fun and relaxed and keep the visits short initially.

After a few practice visits, add two more people to the call, and experiment with adding more as needed. Watch your child’s interest in the calls — are they watching or are the sounds or visuals too overwhelming? Keep it fun and relaxed. If your child still resists participating, try having them watch from the side where they can see other family members. Show your child that these calls can be fun and a great way to stay in touch with others.

If possible, you can also try including your child in a work Zoom call. Other variations include:

Have their siblings model the behavior. You can prompt your child to say, “When is my turn?” or “I want to do that.”

Tell your child they do not have to look at the screen. They can instead look off to the side and they might also hold an object to show the doctor or whatever you can think of or try to engage your child.

Make it a process. You can start with just their head leaning over in front of the camera, then move on to sitting in front of the camera for two seconds, then gradually increase the time as the child tolerates the activity. Go at your child’s pace and keep it calm and fun(!).

Use snacks or simple activities as appropriate. Try only if you think it will help your child sit longer. You will also have to determine if it will be too distracting for the child to see the doctor.

Take turns. If the child would like their own time with the doctor, consider talking first, then the child can have their own time with the doctor while you slowly move away. But stay close since your child would be on the screen by themselves. Continue for as long as you think your child will tolerate it.

Have the child do show-and-tell for the doctor. Again, you will determine what the appropriate length of time is for this.

Reward your child. Offer your child a preferred activity if they will join a call, even if it is for those two seconds.

Also see How to Prepare for a Telehealth Visit, a webinar with Dr. Rebecca Shaffer and Dr. Ernest Pedapati.

Jayne Dixon Weber, director of community services, NFXF

Jayne Dixon Weber
Jayne served as the NFXF director of community education (and other positions over the years) from 2007 to 2023. She has two adult children, a son with Fragile X syndrome and a daughter. Jayne is the author of Transitioning ‘Special’ Children into Elementary School, co-author of Fragile X Fred, and editor of Children with Fragile X Syndrome: A Parents’ Guide. Jayne likes to read, enjoys photography, and goes for a walk every day.