Still fighting her way through a difficult diagnosis
Woman learns how to overcome chronic condition’s pain with opioid-free treatment
On April 26, 1999, Tijuana Adams of Waldorf welcomed a baby girl named Kaitlyn into the world, not knowing that her daughter would need a life-saving bone marrow transplant several years later after being diagnosed with sickle-cell anemia.
“At seven months pregnant, I was told that she was going to have sickle-cell anemia,” Tijuana Adams said. “That day was very devastating. Within the next couple of weeks, I did tons of research on sickle-cell anemia so that when Kaitlyn was born, I was prepared on how to treat her and take care of her.”
As a young child growing up with the disease, Kaitlyn Adams lived with excruciating chronic pain every day. Doctor after doctor couldn’t give her family answers on how to stop the pain, other than prescribing unusual and near-deadly levels of morphine and opioids.
“Throughout Kaitlyn’s life, she dealt with a lot of pain. Kaitlyn was in the hospital at least two times a month, dealing with pain crises even as a baby,” Tijuana said. “The worstcase scenario that we did have was [when] Kaitlyn was on a ventilator for over a week in the [intensive care unit]. That was devastating because we didn’t know whether it was going to be a good thing or bad thing. But she survived and came out of that.”
With the country being in the midst of an opioid epidemic, the Adams family was seeking a way out but didn’t know where to turn. They thought a bone marrow transplant was a logical solution to end Kaitlyn’s pain.
Having been a patient at Children’s National Medical Center, Kaitlyn was transferred to Johns Hopkins University Hos- pital, where doctors had initially told the Adamses that she would be taken off the opioids as Kaitlyn’s intake was well over the recommended dosage.
“Kaitlyn had been absent from school so much,” Tijuana said. “Five years ago, we were introduced to what is called a half-match bone marrow transplant. Kaitlyn was a candidate for [that procedure, which] was done at Johns Hopkins.”
Unfortunately, Kaitlyn’s body rejected the transplant and she went back to having severe chronic pain.
“Kaitlyn was on so much pain medicine that a normal person would not be able to handle,” Tijuana said. “That was her everyday life. Eventually, her body got immune to it and she got immune to it. Because of the continued pain, she continued to get more pain medicine. Kaitlyn was in pain every single day.”
“It’s hard to put into words,” Kaitlyn said. “It was a very depressing time and it felt like I had no hope — my body was hurting every day, all day. My mood was always depressed. I wasn’t able to go out and do things and I just didn’t have hope for my future. It felt like I was suffering in silence.”
Kaitlyn said being on so many opioids made her feel drowsy and out of her right mind. In addition to dealing with depression, she became short-tempered and couldn’t get a grip on reality.
“I slept most of the days and as I look back, I see how it changed my attitude,” she said. “I was irritable and did feel like a zombie some days. It was just like [life was] moving in slow motion. It affected me a lot.”
But fortunately, that all changed when doctors introduced the Adamses to an innovative, opioid-free treatment approach at the Kennedy Krieger Institute in Baltimore. Pediatric health professionals designed a multi-disciplinary pain rehabilitation program that provides medical care for children and teens living with chronic pain, offering the tools needed to conquer their hardship and take back their lives.
As one of the few programs of its kind in the country, Kennedy Krieger’s pain rehabilitation program offers a full continuum of services for the evaluation and treatment of chronic pain, and also functional disability in children and young adults. The interdisciplinary approach includes cognitive behavioral therapy, physical therapy, occupational therapy, non-narcotic pain medications and interventional pain procedures.
“It wasn’t really a hospital setting — you weren’t in your robe, hooked on to machines all day and couldn’t go out. It wasn’t like that at all,” Kaitlyn recalled. “At Kennedy Krieger, they kept us on a schedule.”
Dr. Suzanne Rybcynski, the medical director of Krieger’s inpatient pediatric rehabilitation unit who treated Kaitlyn for a month, said a main aspect of the interdisciplinary approach is creating a plan that’s tailored to each patient’s specific needs. There’s constant communication between the treatment team, the patient and the patient’s family so that interventions can happen quickly.
Patients in the pain rehabilitation program range from 6 to 18 years old. Krieger staff collaborate with rehabilitation therapists to help patients gradually increase strength and endurance, which Rybcynski said increases their overall motivation.
“Our program really focuses on the big picture of an individual with chronic pain,” said Rybcynski, a Parkville resident and mother of four including two stepchildren. “Because I treat children who need to be weaned off of opioids, I think one of the things we can do is really prevent them from prolonged courses of opioids. If you have a lot of kids start taking prescription medications in ways that are not intended for their use, they can just get addicted to it. So not giving as much is a way for pediatricians, surgeons and people who treat pain in the acute setting can make changes to prevent that in kids.”
The program also offers fullscale evaluations, outpatient therapies, day treatment, inpatient rehabilitation and interventional procedures under sedation, which are offered at only a few hospitals nationwide, according to a press release from the institute.
“One of my coping skills is to always be occupied when I’m feeling pain,” Kaitlyn said. “I think it’s a family matter when you’re changing someone’s lifestyle. My parents had to get used to not always asking me, ‘Oh, are you in pain?’ so, that allowed my mind to be focused on something else. It was very good that they involved the whole family.”
Kaitlyn participated in the program last year for about four to five weeks, starting at the end of February to March. When she came out, Tijuana said her daughter did a complete 180 as Krieger staff remarkably nursed her back to health better than ever before.
“Our plan, which was successful [in treating Kaitlyn], was to wean her off really high doses of narcotics. She was on doses that would be life-threatening if an ordinary person took them out of the blue,” Rybcynski said. “We had to work together with our whole team to help her get off the medication while doing physical therapy, occupational therapy, education, child/life therapeutic recreation and lots of psychological support.”
“They weaned her completely off of all of her pain medicine,” Tijuana said. “The only thing Kaitlyn is currently taking, and when she completed the program, is Tylenol.”
For Rybcynski, she said the program’s goal is to address pain while ensuring kids can recover in a life-changing way.
“Before she came to us, she had a really hard time sleeping and then she had no energy because she couldn’t sleep,” Rybcynski said. “It all sort of worked together to help her level of activity and really tolerate the decreasing of her medication.”
As for Kaitlyn, her mother said she now has more energy, eats well, spends quality time with family and is even exercising. Thanks to behavior therapy which helped her learn different coping skills, Kaitlyn is now able to manage her pain and live a normal life.
“I can see the difference from now being off of the medication and looking back to the days when it felt like I couldn’t get out of the bed,” Kaitlyn said. “I feel like I improved so much.”
Now that the 19-year-old has the tools needed to conquer her chronic pain and take her life back, Kaitlyn said she highly recommends the program.
In this 2013 photo, 14-year-old Kaitlyn Adams of Waldorf smiles as she sits upright in a hospital bed.