Mighty Blog

From hopelessness to triumph: Eliana’s battle with chronic pain

by Cami Vogt

Our story is not one of acute trauma or even an emergency. For some it may seem less than dramatic. But we hope our story will give courage and hope to all those other parents who cope with chronic illness in their child.

Our story is of a long journey; it tells of the amazing fortitude of one little girl, the perseverance of her siblings and the compassionate and enduring care of a team of experts.

Eliana, 8, visited Kavita Desai, Ph.D, on Jan. 21, 2015, at the Kiran Stordalen and Horst Rechelbacher Pediatric Pain, Palliative and Integrative Medicine Clinic.
Eliana, 8, visits Kavita Desai, Ph.D, on Jan. 21, 2015, at the Kiran Stordalen and Horst Rechelbacher Pediatric Pain, Palliative and Integrative Medicine Clinic.

We came to the pain and palliative care clinic at Children’s Hospitals and Clinics of Minnesota in January 2013 after two lonely and frustrating years of trying to find out the source of our little girl’s pain.

Eliana, then 6 years old, suffered almost constantly from severe headaches, stomach pain, deep body aches, chest pain and debilitating fatigue. We sought out every specialist we could think of, but there were no answers, and no freedom from her suffering. When our neurologist at Children’s, Elizabeth Gilles, MD, gave us the opportunity to consider this unique and groundbreaking clinic, we were skeptical. We had tried so much and were so tired. But we knew we had to try — for Eliana.

And so we found hope. That hope came from a team of experts who were willing to rally around not just Eliana, but our entire family. They showed us that they understood that chronic pain affects the entire family, not just the child. They validated her pain, our experiences and fears. They also gave us a diagnosis: chronic pain disorder.

Eliana continues to battle chronic pain and improve.
Eliana continues to battle chronic pain and improve.

But most of all, they showed us the effectiveness of what a team of specialists in pediatric pain could accomplish. At any one time, we may have up to five people from the team working with us. That lonely feeling of the past is gone; it’s amazing how much stronger you can be when you’re not alone.

We still are on this journey. Eliana has turned two whole years older since we first arrived at the clinic, which celebrated the grand opening of its new space this month. She has worked so hard and gotten so much better. But chronic pain in children is complicated and requires perseverance. The true hero in this story is our Eliana Faith, and we stand in awe of her fortitude.

None of this would have been possible without her amazing pain team at the Kiran Stordalen and Horst Rechelbacher Pediatric Pain, Palliative and Integrative Medicine Clinic. We are indebted to Stefan Friedrichsdorf, MDKavita Desai, Ph.D; physical therapist Andrew Warmuth, nurse Donna Eull, massage therapist Candace Linares, social worker Cindy Daughtry and receptionist Alison McQuade (our first line of defense!).

Thank you for believing in us, for partnering with us and for giving us hope. Let the journey continue — together!

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About the Kiran Stordalen and Horst Rechelbacher Pediatric Pain, Palliative and Integrative Medicine Clinic at Children’s – Minneapolis

Pain of any kind not only is disruptive to the life of a child, but also to the child’s family. Children’s has the largest, longest-running pain and palliative and integrative medicine program in North America. Children’s combines the best and most-appropriate pain medicines with the best integrative therapies (like massage, aroma therapy and biofeedback) to help alleviate kids’ pain. The pain clinic is made up of a diverse group of providers, including doctors, nurses, physical and massage therapists, psychologists and social workers – all of whom rally around children and their families so they can heal.