WOODLAND — Addison Holler’s morning routine is a little different.
That’s something Addison’s slumber party guests can attest to. When Addison, 14, wakes up in the morning, her body isn’t connected properly. She can have her knees, shoulders, hips, toes or fingers dislocated. Or maybe she needs to pop her jaw back into place because it has shifted to one side.
“I wake up and I pop in all the joints that I know are out,” Addison said. “Some I don’t know are out until I stand up, and I’m like, ‘Oh, my big toe is out,’ and I’ll have to pop that back in.”
“She has friends who spend the night, and they watch her in the morning as she has to go through her snap, crackle, pop to get them back into place,” her mother, Kathy Holler, 41, added.
Addison frequently experiences dislocations because she has Ehlers-Danlos syndrome, a disease that weakens the connective tissue of her body. But that’s just a slice of the maladies Addison has encountered in her young life. She also has postural orthostatic tachycardia syndrome, which affects blood flow, and can cause her to pass out when standing up from a reclined position. And she has mast cell activation syndrome, which creates allergic reactions to different things at random points in time.
From late January to November last year, the Hollers were “running the emergency room gauntlet,” as Addison’s mother said.
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The problems started right after Addison’s 13th birthday, when the happy, active girl started to feel abdominal pain. Her mother thought it was regular cramping, or perhaps appendicitis. They took Addison to Vancouver Clinic in Salmon Creek. When tests returned normal, Addison was sent home.
Three or four days later, her family took her to Randall Children’s Hospital in Portland for treatment of her pain. She stayed for a few nights, and had an X-ray, ultrasound tests and blood work. Still no answers, so Addison was sent home again, and told to visit her primary doctor. But then she started experiencing cyclical vomiting.
Addison went back to Randall and stayed for 10 days. She underwent a battery of tests, most of which returned without new discoveries. Doctors did find out her stomach was borderline paralyzed, but didn’t know why. They also found eosinophils in her stomach, a type of white blood cells indicative of an allergic reaction, but weren’t sure of a diagnosis.
Three days later, Addison visited an allergy specialist and tested allergic to “basically everything,” Holler said.
“It came back that she was deathly allergic to citrus, but she had lemonade just three days prior and was fine,” Holler said.
Addison was put on an elemental diet with no processed food, but she stayed allergic to everything. Addison then started adding food back into her diet, and experienced pain while eating, then more cyclical vomiting. There was about a six-month period where Addison only ate seven foods, her mother said.
Seeking a diagnosis
Since her first hospital visit, Addison had been cycling through medications. At one point, she took 42 pills a day. Addison’s mom started carrying a thick binder to let new doctors know about Addison’s escalating medical profile. Holler said the family feels like Addison’s pain wasn’t taken as seriously because of her gender. That bias in the medical community has been documented by research and studies.
“People were saying ‘I was crazy’ and ‘it was all in my head.’ That was hard,” Addison said. “When I was told it was all in my head or I was crazy, it was like, ‘No, I’m not. I actually have this pain, but I can’t prove it to you.’ ”
In spite of everything, Addison kept up with schoolwork and maintained her good grades. She was inducted into National Honor Society in May. To help regulate her hormones, doctors prescribed a birth control pill in May, but her menstrual cycle became so heavy that she was borderline hemorrhaging, Holler said. Her iron dropped, too, and she became anemic.
Addison would vomit the week before each menstrual cycle, which doubled to every other week. So she was vacillating between cyclical vomiting and menstrual cycles each week. Doctors put her on a Progesterone-only pill in July, which stopped her menstrual cycle.
In August, Addison finally received diagnoses for POTS, mast cell and EDS.
Around that time doctors also discovered Addison’s body doesn’t process medication properly, and when they found out she has mast cell activation syndrome, doctors also discovered estrogen is a trigger.
“The natural hormone that came up during puberty, her body creates an allergic reaction to,” Kathy Holler said.
Doctors inserted a feeding tube through Addison’s nose right after Thanksgiving. The cyclical vomiting and menstrual cycle are the only problems that have been solved. Addison still has allergic reactions constantly, so she carries an EpiPen with her in case of bad reactions.
She became allergic to her orthodontic retainers, so those were taken out. Her own hair can cause allergic reactions sometimes, and regular clothing can, too.
“I’ll be wearing a shirt all day, and then at some point in the night I’ll wake up and have hives all over my back,” Addison said.
Tomatoes make her mouth itchy, and she’s gluten-free now. Addison carries hand sanitizer at school, because she’s allergic to the soap. Some of the allergies come and go, and others stay.
The Hollers are hoping a long-term pain rehabilitation clinic at the Mayo Clinic in Rochester, Minn., will wean her off the feeding tube, and get her back to school full time. They are trying to raise $50,000 for the clinic. She attends alternating half-days at Woodland Middle School now, but usually has to miss a minimum of one day a week due to pain.
Addison said “living normally” is what she misses most about her life before pain. She used to do martial arts, but has given that up. She loved volunteering in her church nursery, but it isn’t quite safe to hold babies with constantly dislocating joints, and a feeding tube that tempts curious newborns.
Addison recently tried to help her grandmother — who was just diagnosed with cancer — move a brick in her chicken coop. Addison’s shoulder dislocated, and she dropped the brick on her foot, which fractured it.
The Hollers are also hopeful Addison can meet some friends in Minnesota, who can relate to her. Addison said her friends have been very supportive and visit her, but she still is missing out on a regular adolescence.
“My problems are a lot different than kids at school,” Addison said. “Kids are like, ‘Oh, I just broke up with my boyfriend’ and I’m like, ‘Oh, I just dislocated my hip.’ ”
“You have to redefine normal,” her mother added. “Because what you expected your kid to do — like go to parties, go to prom, have all these experiences in high school and go away to college — that’s just not in the future now.”
The family worries that puberty might bring the same problems for Addison’s sisters — Katie, 11, and Emily, 9. Addison’s dad Erik works at a telecommunications services provider in Estacada, Ore., and Kathy Holler works at the Wild Salmon Center in Portland. Addison still has hopes of going to medical school and becoming a doctor. She’s already got a leg up when it comes to medical experience.
“I used to think it would be impossible to be a doctor. Now I almost look at this as something that’s going to help me,” Addison said. “All these people are going to have to learn these things when they’re in medical school, and I already know what they’re all about. When other kids have things, I’m not going to be the one who tells them, ‘It’s all in their heads’ or ‘they’re crazy.’ I’m going to keep working to figure it out for them, since I know what it’s like.”