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Bixby mom shares daughter’s journey with rare form of Down syndrome

Taylor Paul
Posted at 3:20 PM, Mar 04, 2022
and last updated 2022-03-07 13:01:04-05

BIXBY, Okla. — Doctors diagnosed twenty-year-old Taylor Paul with Down syndrome after her birth.

Taylor’s mom, Erin Parks, says her daughter was always social and outgoing. Taylor’s family started noticing some slight changes in 2017, then Taylor was hospitalized with pneumonia.

When she came home from the hospital, Parks says her daughter, “was a different kid.”

“The thing that was the hardest for us is that she was regressing in all of these skills to the point where she stopped eating,” Parks said. “She couldn’t even lift a fork. We had to feed her.”

Parks says it was a gradual process, but Taylor started losing motor skills like her ability to feed herself and talk. They started doing a series of tests, visiting doctors, and trying to figure out what was wrong.

“This affected our whole family,” said Parks.

“It affected her friends. It affected her grandparents. Everyone was affected by it. We were saddened because we wanted our old Taylor.”

Taylor graduated from Jenks High School in 2020, and her mom says the last few years of her high school career were difficult as she was dealing with the loss of motor skills.

After losing 30 pounds, because she couldn’t eat, Taylor and her mom spent dozens of days in the hospital in Oklahoma City from August to November of 2020 trying to figure out what was wrong.

“The eating is what really signaled, when you won’t eat your favorite french fries and Reese’s peanut butter cups, that this is not a good situation,” said Parks. “That’s why the process is grueling with insurance and referrals and wait times.”

By the spring of 2021, Taylor was officially diagnosed with Down Syndrome Disintegrative Disorder. It’s a development regression in children with Down syndrome, where children lose adaptive, cognitive and social functioning. The disorder has commonly been misdiagnosed as early dementia.

“If I can let one family know that this is something that they can figure out,” said Parks.

After getting the proper diagnosis, Taylor started IVIG, an immunotherapy treatment, along with ECT, electroconvulsive therapy.

“ECT is very controversial. But when you have no quality of life and your child is unable to function or feed themselves and you haven’t heard them talk in several months and they did previously talk, behavior is a form of communication. She was telling me something,” said Parks.

She says after research, talking with doctors and prayer they decided to go with the ECT treatments, which Parks says has made a significant improvement in her daughter’s life. After the 9th treatment, Taylor finally started talking again.

“We were like WHAT,” said Parks. “Since then, literally that moment she has been talking more. She does horseback riding.”

Parks says since Taylor’s treatments, she’s been more like herself, taking part in Adult Pathways courses, and even playing the role of a teacup in the Penguin Project.

“So many people were praying for her, and I’m thankful every day that we were able to figure something out,” said Parks. “We can’t go back in the past and change any of the things that happened in our journey, but moving forward if we can help any other family, I feel like that’s maybe the reason why God put us through this journey.”

Parks says their current doctor is retiring, so they're working to find another doctor in Tulsa who can do the ECT treatments. It's been about 7 weeks since Taylor last had one and they have seen some slight regression. The family says it's an ongoing journey.

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