Nora Maharry just knew there was something seriously wrong with her son.
When doctors weren’t able to help him — and often gave a diagnosis that wasn’t accurate or prescribed drugs that were doing more damage than good — despite the frustration, she pushed on.
Seth was lucky to have his mother in his corner.
In August 2015 while in Portland playing in soccer tournament, Seth, then 10 years old, told his mother his hip was hurting. He did some stretches, but the pain worsened and soon he was limping.
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“The pain wasn’t getting any better and while he was playing he was favoring his hip,” Maharry said.
Four months later, when physical therapy hadn’t helped ease the pain, Seth saw an orthopedic physician, who prescribed X-rays and more physical therapy. A bout with the flu left Seth sicker, weaker and worse off than ever, and he began having difficulty managing stairs.
More visits to the doctor, chiropractor, acupuncturist, a massage therapist and physical therapy left the family feeling scared, helpless and desperate.
Maharry knew something was seriously wrong. She continued to reach out to physicians, doing her own research and a lot of praying.
Even though Maharry was convinced Seth was sick, she experienced a lot of confusion when she sat across from physicians with education and experience and they told her otherwise.
“I told my husband, ‘I grew that kid one cell at a time and I know when there is something going on,’” she said.
By November 2016, Maharry was driving Seth to school because that first step into the school bus was just too painful.
“We were really looking for help,” she said.
When Seth’s father, Scott, took him to the Children’s Clinic in Federal Way, Maharry told her husband to not come home without getting a rheumatology blood work panel. The blood test came back positive but the doctor said it was common to have a false positive and suggested waiting another four months to see how things shook out.
After getting a referral to Children’s Hospital in Seattle, an MRI came back with no joint damage, but the second MRI done with contrast confirmed that Seth was suffering from chronic recurrent multifocal osteomelitis, or CRMO, a rare condition that occurs in roughly 1 in 1 million people.
Finally the family had a diagnosis.
What followed was a prescribing a series of drugs to find what worked for Seth. In February, the family finally settled on Humira, at a stiff $5,500 a month.
“Within 24 hours of his first injection, he was able to walk with no bone pain,” Maharry said.
An endoscopy in June found that a nonsteroidal anti-inflammatory drug Seth was taking was irritating his stomach lining and things began to improve. It has now been six weeks since he has experienced bone pain or nausea.
“This disease is terrible, but the treatment is not fun either,” his mother said.
The future is uncertain for Seth, a student at Kopachuck Middle School.
“Some kids go into remission and some people experience a temporary remission with flare-ups and some people experience chronic pain forever,” Maharry said. “It is intimidating that we don’t know where he is going to land.”
The Gig Harbor family is taking special joy the state of Washington declaring October CRMO Awareness Month.
The proclamation, signed by Gov. Jay Inslee, calls for the need for “widespread awareness and understanding of CRMO, (which) is critical for meaningful research to improve quality if life for those with CRMO.”
Statewide, about 50 children and adults suffer from CRMO, and it is often underdiagnosed because of lack of knowledge of the disease, the proclamation states.
Maharry and her family would like to raise awareness of CRMO so no family has to go through the painful and stressful months they experienced before Seth’s diagnosis.
“It is important to Seth and our family and to the CRMO community to bring awareness so that doctors understand that this is out there. It took us 1 ½ years to get a diagnosis,” she said.
A Facebook CRMO page has been helpful to the family, and the Maharrys have made some important connections. Currently, Seth’s doctor at Children’s Hospital, Dr. Yongdong Zhao, and Dr. Polly Ferguson in Iowa City, Iowa are the only doctors specializing in the condition.
“We are lucky to have only an hour drive to see our doctor,” said Maharry. “Some patients are flying in from as far away as Amsterdam.”
Maharry said it was such a relief to finally get a diagnosis and to have her mother’s intuition validated.
I’m really lucky to have a mom that is loving and caring and pushing through with this to get a diagnosis.
“It definitely has helped us move forward,” she said.
Seth is a smart kid, maintaining a 3.8 GPA throughout this ordeal.
Seth also was frustrated with the process and wanted badly to find a diagnosis.
“I went to the doctor appointments, and just wanted to play soccer,” he said. “I’ve played since I was 4 and I love it. I played for Harbor Premier for four years and on my school team. I couldn’t play last year.”
Seth’s brother, Luke, sixth-grader, and his 9-year-old sister, Maggie, are glad to have their brother back.
“I’m really lucky to have a mom that is loving and caring and pushing through with this to get a diagnosis,” Seth said.