Dear Medical Professional, Here's How You Can Help My Child Cope With Medical Anxiety

At the beginning of the week, I had to take two of my three kids to the doctor. After several days of high fevers and the sudden appearance of what looked like impetigo, I ended up seeing the first available doctor instead of waiting for our regular pediatrician to have an opening for us. This meant not only a new doctor but a new nurse as well — nurse Dave.

My youngest daughter, who has Down syndrome, has severe anxiety over anything medical. I have wondered before if this is because as a 2-week-old, she had her first hospitalization requiring several scary tests and procedures. Either way, it has taken her a long time and kind and patient doctors for her to be OK with routine checks. She also does best with familiar people. New people, especially medical professionals, make her especially anxious. So on this last doctor’s visit, when the doctor requested a swab to check for strep, my daughter’s “fight or flight” response went into overdrive. As nurse Dave opened the swabs, she sat on the floor covering her face: “No, no, no, no, no!”

My daughter has a superpower; we call it “noodling.” Other parents of kids with Down syndrome or low-muscle tone might know what I am referring to. She becomes as slippery as a wet noodle. Those flexible joints can squeeze through any grip, so picking her up from the floor is not an option. Once she is down, she is down. Nurse Dave seemed quite uncomfortable, insisting she sit on a chair. I almost laughed as I wedged myself behind my daughter and sat on the floor, supporting her body.

“This is how it is going to work, Dave, you are going to get down on the floor with us, and you are going to do the swab here,” I said. Nurse Dave didn’t seem quite comfortable doing so, but he obliged. Then I told my daughter, “Sweetheart, if you open your mouth and let him do the swab, I will buy you a new Barbie. Do you want a new doll?” She said yes. “OK, open mouth.” Thankfully nurse Dave was on the floor at this point and ready as my daughter rested her body against mine.

The test was positive for strep. The trip to Target resulted in a new Rapunzel doll.

This experience reminded me of her previous pediatrician, who helped her deal with her anxieties by allowing her to first check him. He’d ask her if she wanted to sit on the patient table, a chair or mom’s lap. After years of seeing him, she developed trust and let him check her ears, mouth, nose, etc. without fear or hesitation. He gained her trust by being creative and helping her through her anxiety.

I know our pediatrician is not the only medical professional who has gotten creative to help kids with (and without) disabilities who experience increased anxiety over medical procedures or routine check-ups. So we reached out to our Mighty parents and asked what their providers have done to help their kids.

These were their responses:

1. “We asked in advance for medical equipment (face masks, oxygen tubing, head gear, etc.) that could be taken home. We used the supplies to practice prep procedures on favorite toys and eventually had our child practice prepping us for the procedures. We have done this daily for almost two months leading up to some procedures to normalize the process and decrease fear. We have had success. Our child can also re-enact the entire medical scene from the movie “E.T.,” which we used in social stories and discussing how something may seem scary but end happy.” — Danille F-O.

2. “[My daughter] always brings a stuffy with her. They both get a hospital band, and her stuffy gets to have everything done to it, including a face mask.” — Cassie D.

3. “My oldest son has very high anxiety, and it has taken us five years (so, his whole life) to finally be comfortable with the same pediatrician. There was a time when he was 2-3 that it was an all out circus if he needed a well-check, sick visit, etc. A few times I asked his occupational therapist to come with us, and she held an iPad in front of him while he sat on my lap, holding blankies and lovies and anything to comfort him. His pediatrician has always been aware of him and his comfort level and has taken extra time and effort to accomodate him but gently push him enough so that she can accomplish what she needs and also get him used to being there. Now, he’ll go in with no comfort items and just requests an orange lollipop when we leave. We still have issues stepping up on the scale, but I carry him on it and then the nurse will subtract my weight.” — Kristen H.

4. “My daughter has a stuffed lovie named Bobcat that is absolutely a security for her. We’ve seen many medical professionals over the course of her cancer treatments and its effects, and the ones who stand out the most and reassure her the most, are the ones who acknowledge Bobcat. Her therapist has Bobcat ‘practice’ her anxiety strategies, her oncologists make sure Bobcat ‘understands’ the procedures and treatments, her respiratory therapists who have Bobcat practice his PFTs, her oncology nurses who access Bobcat as well, her X-ray tech that even gave us a DVD copy of Bobcat’s scans. People like that have definitely made our journey much easier to tolerate.” — Amber S.

5. “I bring in a new toy for the doctor to give her when they come in the room. It’s a great distraction!” — Libby T.

6. “I’m the one who administers anesthesia to my daughter. We are such old hands now that the doctors know the routine and just hand me the gas to hook to her trachy. As long as she can sit on my lap and I put her under, she is cooperative.” — Ashlea M.

7. “They turned the lights off and just used flashlights. After an inexperienced professional messed up his blood draw for genetic testing and such (10+ vials), he was terrified. His doctor would let him use her tablet, too.” — Ledia W.

8. “We made sure he has his own separate room while waiting and waited till the moment he went in for the procedure to make contact with him, as contact with strangers doesn’t go well. They also quickly put him into a sensory room where he is able to calm down. And they’re patient… very, very patient and understanding. Makes all the difference in the world.” — Angela M.

9. “Our dentist examines our little guy’s teeth while I tickle him so he opens his mouth without force.” — Shauna M.

10. “I have had a doctor dance around the room to music before my daughter would let him near her. Some providers just know how to make a hard situation easier for kids.” — Tiffany T.

11. “My son had an extreme fear of getting his ears looked at. He has an ENT doctor that got down on the floor with him and chirped like a bird and my son let him look in his ears to find the bird. Now every time my son goes to any doctor he asks them to look for the birds in his ears! He loves having his ears looked at now. I’ll be forever grateful because it used to be an all out fit and I’d have to hold him down (he has tubes so it’s super important for them to look at his ears).” — Lauren W.

12. “I use his toys to talk to him as if I’m them, and it helps tremendously!” — Jamie P.

13. “We have had therapy dogs in the pre-op clinic, child life visit us in the emergency room, music therapy, our dentist sings children’s songs while examining and uses child’s personal toothbrush. We have done conference calls with Daddy. Stuffies and dolls have gotten IVs at the same time. The nurses often let her be the nurse and tell them what to do. (Blood pressure, listen to heart rate).” — Candice W.

14. “This is on the opposite end, but I am a nurse in an emergency room and when I have to start IVs on little ones, often times I will have the little one face Mom (so he/she can lay on her chest) with one arm behind mom’s back and mom hugging him/her. The last little girl I did this for didn’t even flinch and Mom said it normally took three adults to hold her down. I always try to use the parents for comfort.” — Holly R.

15. “We’ve had doctors meet us on the playground at the child health center so we could talk while a child played. One really great doctor blew bubbles for my autistic daughter when she was in the hospital so she would let him examine her. We love our doctors here.” — Bonnie P.

16. “My daughter has a baby doll named Julia (the size of a real newborn) that the doctors ‘check’ at the same time. They always ask Julia how she is first before asking my daughter. Even the dentist gets into it and Julia wears the paper bib thing and sunglasses so the light won’t bother her eyes!” — Kathryn P.

17. “My son’s main pediatrician’s nurse never did anything that would hurt. Another nurse from the office was called in for anything that may hurt. It really eliminated anxiety with the nurse.” — Laura H.

18. “At my little man’s last annual, his doctor started looking him over and he started kicking her pretty hard. I tried to get up to assist, and she held her hand up to stop me. She said, ‘He is just stressed, afraid, and unsure after all he’s been through. He needs to know it’s OK with just me.’ She patiently got him through the whole exam, giving him time for breaks and helping him allow her on his own to be examined. I absolutely love our doctor. We have seen her for many years with my older kids as well. I left crying that day with such joy and relief.” — Crystal H.

19. “My son’s ICU team had me assist with extubation once. Matthew had started to show signs of procedural anxiety so they decided they didn’t want me to leave the room, and because I am totally across his care outside the hospital, they had me do the suction when the doctor removed the tube from his throat and the nurse then put the Bipap mask on. I really appreciated being there for him every step.” — Abigail B.

20. “I love when doctors are willing to literally leave their white coats outside. It’s the simplest thing and a visual trigger that can be easily avoided if they will. I also used to apologize for all the extra effort that came with us until a specialist told me, ‘Don’t apologize. I’m essentially a stranger. This is scary. Crying and fighting is an appropriate response to fear.’ It changed the way I approached other appointments after that.” — Shannon W.

21. “My son had an amazing dentist when he was little. She had a room off to the side for kids that needed some quiet. He got to sit on my lap facing me and lay back in hers, then get a cleaning and exam. He felt safe and could look right at me, yet she was able to do what she needed. She also used a dental tool that was battery operated and looked like a metal vibrating toothbrush instead of the ones that are loud and attach to a cord. She was awesome!” — Laura H.

22. “We had an awesome dental hygienist who did my daughter’s cleaning while sitting on the floor with her. Her pediatrician lets my daughter look in his ears and listen to his heart using his equipment (which is so important in making her comfortable with the medical tools!)” — Emma B.

23. “The ER nurse convinced my son to let her put in an IV by letting him put an IV in his stuffed Pikachu. It worked like a charm.” — Stephanie H.