When Treatments Traumatize
By Jeanette Weaver

I held my four-year-old daughter down on the gurney, tightly holding her arms and shoulder still. Her grandmother held her legs. I looked down at my daughter’s face. Eyes squeezed shut. Contorted, bright red features. She had become non-verbal minutes before as we tried to coax her into allowing her 24-day-old implanted PortaCath to be accessed for the just the second time. Now, as the needle was inserted into her chest she screamed “Noooo! Noooo! Nooo!” in a blood curdling scream that I had never heard come from her throat before. There was an odd sound to her voice. Like gears grinding in an unlubricated engine. Tears were everywhere. Her nose was draining, smearing across her face. I found the experience so heart wrenching I broke down sobbing.
“Experienced” JM parents will ask: Did you use EMLA to numb her skin? Did you involve the Children’s Hospital Child Life Department in preparing her for having her port accessed? Did you offer rewards for after the port was accessed? Did you have other distractions available? Yes. So, how did we get to this place?
Grace was diagnosed in late August 2007 with juvenile dermatomyositis. Her initial treatments were 3 days of methylprednisolone by IV plus IVIG and methotrexate. By October it was clear that Grace’s initial treatment did not work effectively. We restarted her treatment regimen in October 2007, with Grace now receiving weekly infusions of methylprednisolone and monthly IVIG. From August 2007 to January 2008, Grace took her treatments by IV in her hands. The high doses of prednisone changed her tissues. Her arms and legs were no longer viable choices for IV placement. The veins in her hands became so scarred they could not be accessed without multiple attempts. In January 2008, Grace’s hands and arms were poked 9 times for 3 successful placements over a 3 week period. A surgeon recommended Grace have a PortaCath implanted.
In preparing for the PortaCath surgery we read the “A Port for Me” book. Grace genuinely was looking forward to having the port. She was thrilled to be getting rid of the IVs. Once implanted, however, the PortaCath was uncomfortable to Grace. She described it as painful for about 8 weeks following surgery. It continues to be sensitive to pressure even at this writing 4 months post-op. Because her hands were so scarred, we needed to use the PortaCath after the 10 days minimum healing period had ended.
At the first port access we used the ritual we had used for IV placements. Grace was mostly cooperative. But, as the needle was inserted and there was a little pressure exerted on the port she screamed out and cried. She said it hurt. The nurses tried to convince her that it didn’t hurt, that she was just scared. She somewhat reluctantly agreed she was scared. But after the second port access, as I first wrote about above, I became convinced that more was happening to her than just a needle being inserted. Previously, her methotrexate shots had been uneventful. Now, Grace was having to be held down to get her shots and was screaming and crying in the same terrified way.
A child psychiatrist confirmed my fear: Grace was being traumatized by all of the needle procedures she had to undergo. Since she received either a shot or infusion every week she did not get enough time to recover and learn new coping skills. The psychiatrist’s plan of care was for Grace to be sedated for every procedure for the next 2 months while she could learn some new coping skills and then be re-introduced to the procedures slowly. It was a great plan.
But, it was not a practical plan. We could never achieve sedation for the shots with just oral sedatives. When she had colds the anesthesiologists would not risk sedating her. She was sedated once for her port access, then not sedated for the next 2 infusions. During this time, Grace was repeatedly held down for her port access. With each screaming hold down I could feel my energy literally sucked from my body. My anger at everyone mounted. Why couldn’t someone help my kid? How could medical caregivers believe that doing this to a child is acceptable?
I started researching. Grace couldn’t be the first child to experience anxiety and pain with IVs and venous port catheter access. I found scholarly medical literature reporting the use of virtual reality glasses for young children undergoing painful procedures— like burn wound debridement. There were studies that demonstrated the effectiveness of virtual reality was not lost with repeated use. The literature stated “the virtual reality glasses were as effective as morphine. Additional studies looked at the use of VR for cancer children undergoing venous port access, and children who needed repeated IV access. More internet research led me to call Ross Rainville at i-O Display Systems, LLC in Sacramento, CA (www.i-glasses.com). He was extremely knowledgeable about the studies that had been done and even knew the technical specifications of the glasses used in the various studies. His company offered a “no questions asked 30 day money back guarantee.” I had nothing to lose. I didn’t fully understand how the glasses could work, but I hoped desperately they would. I was ready to pay anything to help my child, so $250 was an easy decision.
After trying the virtual reality (VR) glasses out for fun, Grace announced at her mental therapy appointment that she wanted to try her port access with the VR glasses at the next infusion. Grace and I practiced her port access with the VR glasses for 1 week before her first port access. She would lie on her bed with a floppy hat over her face so that she could not possibly see anything in her peripheral vision. I would wash the port area 3 times like the nurses. I used cold water on q-tips to mimic the cold alcohol cleanings at the hospital. Then I would feel for her port and apply pressure like the nurses did. Then I used the back of a sample Huber needle (that had the entire needle stake removed) to push against her skin in a slightly uncomfortable way. I would hold the back of the needle against her for a count of 20. We did this routine 3 times each night.
At the next port access we tried the VR glasses for the first time. Grace removed her EMLA and lay back on the gurney. She had picked out a fun movie that she really wanted to watch. Her floppy hat was in place. We started with the cleanings. When the nurse felt for port, applying a little pressure, Grace said “Ow”. She did not rise up or otherwise move. When the needle went in Grace did not make a sound or react. It was indeed a miraculous end to her trauma.
Why do the VR glasses work so well? One reason is because earphones are built into the glasses. So, not only is your child watching their movie in a powerful, close-up position, but the child is hearing only the movie. What is the child watching? Anything they want. The glasses hook up to almost all equipment that emits an audio-visual signal. It can be hooked into a TV, DVD, VCR or iPod. I carry a portable DVD player with us to the hospital. For a more scientific discussion of why VR works, go to www.vrpain.com.
The audio and visual distraction of the VR glasses is probably the most powerful non-medication distraction available. After witnessing the power of these VR glasses, I cannot help advocating for their use. No child should ever have to be traumatized to receive their treatments if there is some alternate available.

Clin J Pain. 2008 May; 24(4): 299-304. Virtual reality pain control during burn wound debridement in the hydrotank. Hoffman HG, Patterson DR, Seibel E, Soltani M, Jewett-Leahy L, Sharar SR. Human Interface Technology Laboratory, Departments of Mechanical Engineering, University of Washington, Seattle, WA, USA. “Results provide the first available evidence from a controlled study that immersive VR can be an effective nonpharmacologic pain reduction technique for burn patients experiencing severe to excruciating pain during wound care.” See Also: Arch Phys Med Rehabil. 2007 Dec; 88 (12 Suppl 2):S43-9. Factors influencing the efficacy of virtual reality distraction analgesia during postburn physical therapy: preliminary results from 3 ongoing studies. Sharar SR, Carrougher GJ, Nakamura D, Hoffman HG, Blough DK, Patterson DR. Department of Anesthesiology, University of Washington, Seattle, WA, USA. ”When added to standard analgesic therapy, VR distraction provides a clinically meaningful degree of pain relief to burn patients undergoing passive ROM PT. Multiple patient factors do not appear to affect the analgesic effect. Immersive VR distraction is a safe and effective nonpharmacologic technique with which to provide adjunctive analgesia to facilitate patient participation in rehabilitation activities.”

Clin J Pain. 2001 Sep; 17(3): 229-35. Effectiveness of virtual reality-based pain control with multiple treatments. Hoffman HG, Patterson DR, Carrougher GJ, Sharar SR. Department of Psychology, University of Washington, Seattle, USA. “Pain ratings were statistically lower when patients were in virtual reality, and the magnitude of pain reduction did not diminish with repeated use of virtual reality. The results of this study may be examined in more detail at www.vrpain.com.”

Anesth Analg. 2007 Dec; 105(6): 1776-83. The analgesic effects of opioids and immersive virtual reality distraction: evidence from subjective and functional brain imaging assessments. Hoffman HG, Richards TL, Van Oostrom T, Coda BA, Jensen MP, Blough DK, Sharar SR. Department of Mechanical Engineering, University of Washington, Seattle, Washington 98195, USA. “These subjective pain reports and objective functional magnetic resonance imaging results demonstrate converging evidence for the analgesic efficacy of opioid administration alone and VR distraction alone. Furthermore, patterns of pain-related brain activity support the significant subjective analgesic effects of VR distraction when used as an adjunct to opioid analgesia.”

J Am Acad Child Adolesc Psychiatry. 2004 Oct; 43(10): 1243-9. A pilot and feasibility study of virtual reality as a distraction for children with cancer. Gershon J, Zimand E, Pickering M, Rothbaum BO, Hodges L. E P Bradley Hospital, East Providence, RI 02879, USA. “These findings suggest that virtual reality may be a useful tool for distraction during painful medical procedures.”

Cyberpsychol Behav. 2006 Apr; 9(2): 207-12. Effectiveness of virtual reality for pediatric pain distraction during i.v. placement. Gold JI, Kim SH, Kant AJ, Joseph MH, Rizzo AS. Clinical Anesthesiology & Pediatrics, USC Keck School of Medicine, Childrens Hospital Los Angeles, Los Angeles, California 90027-6062, USA. “VR pain distraction was positively endorsed by all reporters and is a promising tool for decreasing pain, and anxiety in children undergoing acute medical interventions.”

Copyright Jeanette Weaver 2008