Question:
For the past few years, we have not been able to have my 14-year-old examined with any of her physicians due to her high anxiety and fears in doctor offices. I’ve been trying to coordinate with her cardiologist and dental and general practitioners to possibly sedate her so that they could do their exams, teeth cleaning, blood work, et cetera all while she was under anesthesia just that 1 time. I don’t know what else to do she will not cooperate for any exam with any doctor, and I don’t want to keep allowing her to not have checkups. No one has really helped to return calls or cooperated with this concept and so she’s continued to not have her checkups. She had open heart surgery at 5 months old which was 14 years ago, and she’s been perfectly healthy since as matter of fact she doesn’t get sick and only sees her pediatrician for well visits however she’s not very good at brushing her teeth so I’m mostly concerned with her oral health. Also, she is very overweight She is about 4’10” and 130lbs. Can you help? Please advise.
Answer:
Thank you for your question. We know how difficult it can be for some individuals with Down syndrome to cooperate with medical procedures.
One question often asked is does having had lots of procedures in the past or perhaps a big surgery in the past make it more likely the person will find future medical procedures difficult. There isn’t a clear answer. Some unfortunately have developed fear of procedures due to previous procedures. Some individuals who have had many procedures previously seem to “just get used to it” and do very well. One man we see was very frightened by any procedure, immunization, or blood draw for many years. Then he needed to be hospitalized for an infection. I feared the worst. He did well in the hospital with necessary procedures and after that hospitalization he has been less resistant to medical procedures. It isn’t easy sometimes to predict what will happen.
What are some ways to try to help the person be able to cooperate or participate in procedures?
For some individuals, making small steps towards the goal may work. For fear of going into a medical office appointment, for example, perhaps one day driving by the office, the next day sitting in the car in the parking lot, the next going into the lobby, and the next day going into the exam room.
Some psychologists can provide desensitization therapy that makes procedures manageable for some individuals. This is a more formal approach to the stepwise approach described above to get comfortable with the procedures.
For some, having pictures or a video of what to expect is helpful. For example, we have a short video of what a person with Down syndrome might expect before coming to our office.
Pictures can be taken as well and built into a visual aid. This may be helpful as a strategy used in addition to whatever else is used to allow the procedures to be completed.
For some individuals, relaxation or sensory strategies make it possible for the person to be comfortable enough to participate in medical procedures. We have some resources on those strategies:
- Tips for Successful Blood Draws
- Tips for Dealing with Stress Video
- Tips for Dealing with Stress Visual
- Strategies to Help Me Calm Down Visual
Despite those efforts, some individuals need more intervention to allow procedures to be done. As you describe, some of our patients will undergo procedures under sedation or anesthesia. Also, as you describe, if possible, we like to see coordination of procedures so if the person needs multiple tests, procedures, etc. done under anesthesia, as many as possible are done under the same anesthesia. This does take coordination between providers. We have found this sometimes works better at a larger hospital. In our experience, children’s hospitals often do a good job of this. Often the primary care physician or staff can get the process started by referring to the specialists who will do the procedures and asking each one if they can coordinate their procedure with the procedures of the others. Usually, specialists will want to see the individual in their office prior to scheduling the procedure. Your experience is not unusual in that it can be challenging to coordinate all those people. However, it can certainly reduce the need for multiple episodes of being under anesthesia. Sometimes some procedures cannot be done at the same time as others based on safety issues, possible contamination concerns, and other factors.
For the second question about weight, I refer you to a previous question.
We have several resources on weight loss and exercise as well. We encourage including the person with Down syndrome in the process as much as possible. The videos with the actors with Down syndrome can be quite beneficial for a person with Down syndrome to view.
I hope you can help your daughter successfully get the evaluations needed and assist her in managing her weight.