As the option to do telehealth visits opened up over the past six months, we have gathered information to help you make the most of your online visit for your child with Fragile X syndrome, whether they are a young child or an adult. This article will focus on visits to a clinic that is a member of the NFXF’s Fragile X Clinical & Research Consortium (FXCRC), but most of this information will also apply to a visit to a primary care doctor or other health professional.

Suggestions for the 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 that on a telehealth visit, or would an in-person visit better meet your needs?

Call to make an appointment as you always would. You can find a Fragile X clinic here. Discuss your goals with the clinic coordinator when you make the call. Are they doing telehealth visits? Can they do a telehealth visit that is from someone out-of-state? Can they or will they do first-time visits with families? If you decide that an in-person visit is best, here is more information for you.

If you have decided on an online visit, here are questions to ask:

  • How long of a call will I have?
  • What kind of paperwork do I have to complete or sign ahead of time? How do I sign something?
  • How is my insurance charged?
  • What system do I need to have on my computer? Can we practice and make sure it will work?
  • What is best to use – a cell phone or an iPad or a laptop?
  • Is there a better location in the house where I should be? Quiet and good lighting?
  • What kind of information would the doctor like to have?
  • Child’s height and weight. What if I don’t have a scale?
  • Their blood pressure – do I have to be able to take, can I do it ahead of time or do I have to do it during the call? What if I don’t have a machine to do it?
  • List of current prescription medications, including dosing and timing.
  • List of supplements, including dosing and timing.
  • Anything new going on in the family’s life?
  • Status of COVID-19 in their community.
  • Status of schooling, working, or day program.
  • Other information you think the doctor should know.
  • Is there a schedule of what will happen during the call? Can I get it I writing?
  • Do you actually have to see my child on the computer and for how long? What if he or she is sleeping – can I show that?
  • Will there be follow up paperwork/recommendations from the call? How soon can I expect that?
  • Can I text the doctor information?
  • Is the call HIPPA compliant?

What can parents ask the doctor for?

  • Can the doctor be looking at a side screen, so he/she is not looking directly at the person with FXS?
  • Can the doctor have a background that is not too busy?
  • Can you give the doctor a special story or activity about the child that the doctor can ask about? For example, if the child is interested in sports, suggest that the doctor ask the child what their favorite sports team is. If the doctor will do this, have your child wear their favorite sports team apparel. It can be any activity that your child likes – something fun to get the conversation started.
  • Anything else that might make the visit go smoothly for your child, such as a visual schedule.

What the doctors request of the parents:

  • If at all possible, have someone available who can watch your child(ren) for part of the visit so the parents can discuss topics with the doctor and not be interrupted.

Getting Your Child Used to Online Visits

What if the doctor or other professional needs to see your child, and your child is saying, “Not today.” What can you do?

For many, getting your child used to online visits is a new activity and one suggestion is to approach it as a new transition, that is, to break it down into steps and think about each aspect, especially with regards to the sensory issues involved. This may take some time, so it is best to think about this ahead of time and start getting your child comfortable early on. If your child is already doing school online, this process may be quicker, but you will want to see if he or she is going to be any different if a doctor is online.

Model the behavior. Start with an online visit with one family member. Does your child have someone they are especially fond of? Start with them. Keep it fun and relaxed and initially, keep the visits short.

After a few visits, have two other people on the call, and experiment with adding more people on some calls. Watch your child’s interest in the calls – is he/she watching or is it too much? Make sure the calls are not overwhelming for your child to see or hear. Keep it fun and relaxed. If your child will not join the call, maybe you can get him or her to look from the side so 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.

You may not be able to have your child watch you do a telehealth visit, but you could also model a work call, as they will be more serious in nature.

Have other siblings in the family model the behavior. This can be for school or for their own appointments, as this may 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 be looking off to the side, they can be holding an object to show the doctor or whatever you can think of or try to get the child engaged.

Make it a process. It could start as just the head leaning over in the front of the camera, then a sit down in front of the camera for two seconds, and then you can gradually increase the time, as the child tolerates. Go at your child’s pace and keep it calm and fun(!).

Use snacks or simple activities as appropriate. Try these if you think it will help your child sit for a longer time when the doctor is present. You will have to determine if it will be too distracting for the child.

Take turns. If the child would like his/her own time with the doctor, maybe you can talk first, then your child can have their own time with the doctor, while you move away. You should still stay close, but only your child would be on the screen. The child’s ability should dictate the length of time for this activity.

Have the child do a kind of “show and tell” for the doctor. Again, you will have to judge the appropriateness and length of time for this.

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

If your child is already comfortable with Zoom or whatever visual program you use, feel free to email me your ideas. We can all use them. Stay well.

You might find these other resources helpful:

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.