Post Traumatic Stress Disorder (PTSD)
in Children with Complex Medical Needs

Most people know the definition of Post Traumatic Stress Disorder (PTSD), as it has become an unfortunate, common after-effect of war, terrorism and assault. What many people don’t know is that PTSD can occur in people who have had significant, complex medical issues. This is the case with my daughter Riley. I wanted to share our experiences, because I believe that it’s crucial to understand trauma from a child’s perspective, and to increase awareness of the connection between trauma and children with complex medical issues.

PTSD

Post-traumatic stress disorder is described by the National Institutes of Health as, “a type of anxiety disorder. It can occur after you’ve seen or experienced a traumatic event that involved the threat of injury or death.” Symptoms of PTSD fall into three main categories:

1. “Reliving” the event, which disturbs day-to-day activity through flashbacks, memories, nightmares and/or strong uncomfortable reactions to situations that remind you of the event.
2. Avoidance — emotional numbing, feeling detached, not being able to remember certain aspects of the traumatic events.
3. Arousal — difficulty concentrating, startling easily and feeling hypervigilant (increased awareness), increased irritability and anger, having trouble falling asleep or staying asleep.

Riley’s Story

My daughter Riley has a rare, progressive disease called CLOVES Syndrome. She is ten and a half years old, and has—at current count—had sixteen major surgeries, over 40 MRIs, too many hospitalizations to keep track of, a ton of poking and prodding, and medical emergencies and situations where she had little or no control. In 2008, when she was six years old, she was diagnosed with Post Traumatic Stress Disorder. The PTSD diagnosis came after a three-month hospitalization (due to significant post-operative spinal surgery complications) and then a type one diabetes diagnosis.

After the several big medical events of 2008, we saw a real change in behavior and temperament, and a significant increase in inattentiveness and anxiety. Ri was having intense angry outbursts, emotional meltdowns, and panic attacks many times a day. We saw these changes in her often during transitions or when something unexpected happened. She was frequently triggered by strong smells (like chemical smells or the smell of rubbing alcohol), or by loud noises or changes in schedule. At that point, we sought professional help, and saw a licensed clinical social worker, who diagnosed Ri with PTSD and then started Trauma-focused Cognitive Behavioral Therapy (TF-CBT). The therapist that diagnosed Riley provided a foundation for us to be able to understand our daughter’s new mental health needs. But the diagnosis was just the very tip of the iceberg for us, in terms of learning about trauma and how to help Ri deal and cope with it.

Since the PTSD diagnosis five years ago, we have learned an enormous amount from Riley, from talking with other parents who have kids with medical PTSD, by doing our own work in counseling, and from connecting with a new therapist who Ri trusts. We are continuing to learn every day. We are now able to see patterns and predict changes in behavior before it happens, and sometimes we can even head off a trigger before it happens. Now, Ri can accurately identify her triggers and we have lists (literally lists!) of ways to help her or ways she can help herself get through a difficult time. But on some days, despite all that we know and have learned, and despite all of our ways to help her cope, PTSD still has the upper hand.

Children with Medical PTSD

For children who are medically involved since birth, they may not have the words, understanding or ways to comprehend why all of this medical “stuff” is happening to them, and this may impact how they deal on a day-to-day basis. What has been most challenging for us is knowing that our daughter has Medical PTSD, and knowing the triggers for Riley, like being at the hospital, having a change in routine, or pain. However, we still have to subject her to those triggers, because she has several chronic, complex medical diagnoses that must have some level of medical intervention on a regular basis. That’s been a real struggle for us to manage, and painfully upsetting for us as her parents, as we continue to make decisions that are traumatic for her.

The silver lining is that with appropriate treatment and intervention, and tons of carryover at home, our daughter is in many ways just a typical ten-year-old. She has friends, does well in school and has activities that she loves to do, like drama, writing and reading. She loves animals and is kind and compassionate. Similar to how she has managed the unfair hand that was dealt to her medically, she is finding her voice and becoming a phenomenal advocate for both her medical and emotional needs. Her resilience and spirit are amazing, and that has been a true a blessing to see.

Strategies for Identifying PTSD and Coping

Some thoughts for parents and providers of kids with complex medical issues:

• Be observant of changes in behavior, attention, mood, sleep or appetite.
• Trust your gut.
• Ask for help from a professional if you see changes in your child.
• Take care of your own emotional needs and figure out your own self-care plan.
• Connect with others who may be going through similar circumstances.
• Be your child’s advocate in medical situations, and situations that may be traumatic, even if it means disagreeing with doctors, nurses or other well-meaning professionals. You know what your child needs more than anybody else does. And by doing so, you are modeling how to advocate to your child.

The following is a list of what has worked for our daughter, or how we help her cope:

• We talk all the time.
• We have discussed PTSD without stigma and have helped her understand it in age-appropriate terms.
  We’ve helped her develop a toolbox for coping, including strategies, activities and ideas on how to help her manage difficult situations.
• We listen to her words to understand what she needs.
• We strive to find ways to give her choices, so she has some control of most situations, and we have been upfront about things/situations that we (and she) cannot control.
• We educate others about medical PTSD.
• We shopped around for the “right” therapist after we did not make the right choice initially. For Ri, she needed someone low key with whom she could trust and engage in therapy. She immediately shuts down to people who want to jump right into the medical stuff.
• We take breaks from therapy and from talking about trauma, to just do typical kid stuff.
• We have modeled self-care strategies like rest, stress management, meditation, and doing activities that provide joy.

Kristen Davis is a mom to Cole (13) and Riley (10). She and her husband, children and many animals live in Kennebunk, Maine. Kristen founded the patient advocacy organization CLOVES Syndrome Community in 2009 after her daughter was diagnosed with the disease. In her “free” time, Kristen walks the beaches of Maine (as part of her personal self care plan) and collects stones and other beach treasures. She makes jewelry from the one of a kind, Maine beach stones that she collects.