A St. Johns baby may have an undiscovered movement disorder. Her moms seek answers.

·4 min read
Arlo Stollsteimer is 10 months old and has a disease or disorder so rare her treatment team thinks she may be the only one with it.
Arlo Stollsteimer is 10 months old and has a disease or disorder so rare her treatment team thinks she may be the only one with it.

A 10-month-old St. Johns girl is fighting a movement disorder so rare her doctors believe she may be the only one who has it, her moms said.

Arlo's mothers, Ricci and Cortney Stollsteimer, are desperate to discover more information about the disorder that is causing her symptoms.

"I think the hardest part is just seeing Arlo in pain and knowing that she's probably so confused and scared when this happens," Cortney Stollsteimer said. "We can't comfort her, we can't stop what's happening to her."

Arlo has some form of a movement disorder similar to dystonia. She has muscle spasms across her body and she involuntarily can arch her back or move her head. During this, she has no control of her body, Stollsteimer said.

During these episodes, Arlo's heart rate increases and her temperature uncontrollably rises, Stollsteimer said. It's gone up as high as 105 degrees.

Most recently, Arlo's episodes have lasted for hours, Stollsteimer said. She's conscious the entire time. The only treatment that has worked is IV sedation, Stollsteimer said. If she's asleep, her body won't move so it gives her a chance to rest.

"It's incredibly stressful and worrisome," Stollsteimer said. "This is new, she's never had episodes this bad. I think this is the progression of her condition."

Her physicians have done nearly all diagnostic tests available and they cannot find a root diagnosis, Stollsteimer said. At this point, they're just treating her symptoms.

Arlo Stollsteimer is 10 months old and has a disease or disorder so rare her treatment team thinks she may be the only one with it.
Arlo Stollsteimer is 10 months old and has a disease or disorder so rare her treatment team thinks she may be the only one with it.

"This is just really hard on her and we're hoping maybe someone can see this and have had a similar experience or knows a doctor who may be able to help or something," Stollsteimer said.

Arlo has been at Sparrow Hospital in the intensive care unit since Jan. 17, Stollsteimer said. Doctors say she's critically stable.

For the most part, Arlo knows her mothers are there with her, Stollsteimer said. But at the height of her episodes, she doesn't seem to be aware of anything happening around her.

Arlo's mothers first noticed something was wrong when Arlo was a few months old. She wasn't meeting milestones or developing as much as she should have been, Stollsteimer said.

That started the battle to find a diagnosis and treatment for their baby girl, with constant tests, appointments and hospital stays.

Arlo is physically disabled and cannot yet hold her head up by herself, Ricci Stollsteimer said. She cannot speak or emote, though her mothers have been able to get her to smile periodically, she said.

She has cerebellar hypoplasia (a condition where one of the brain's lobes is smaller than usual or not completely developed) and vocal chord dysfunctions that stop her from swallowing and protecting her airway, Ricci Stollsteimer said.

Arlo has a feeding tube and isn't able to eat by mouth, Cortney Stollsteimer said. She could do so until about 6 months old, when she lost the ability. Doctors plan to surgically place a feeding tube straight into her small intestine to help her avoid her aspiration and reflux issues.

Once Arlo is stable, her neurologist wants her moms to take her to a children's hospital that specializes in movement disorders to see if they have any ideas, Cortney Stollsteimer said.

But for right now, the Stollsteimers and their doctors are just hoping to get Arlo back to her baseline, where her episodes aren't hours long and she is awake and alert.

Arlo was just officially adopted by the Stollsteimers last week and they hope to be able to celebrate properly when she is out of the woods.

"We do not know what her life will look like, or how long she will be able to sustain life," Ricci Stollsteimer wrote in a post on Facebook. "But we do know, that she is a fighter, and we will advocate and reach high and low to give her the best life while she is here with us.

"She has the most stunning blue eyes, and she tells us everything with them."

The Stollsteimer's family has set up a GoFundMe page to raise money to cover Arlo's medical expenses.

Contact reporter Kara Berg at 517-377-1113 or kberg@lsj.com. Follow her on Twitter @karaberg95.

This article originally appeared on Lansing State Journal: St. Johns moms seek info on baby's mystery movement disorder