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Local girl battling Postural Orthostatic Tachycardia Syndrome

  • Written by David B. Clark
Ella was diagnosed with POTS in 2017.

 

WOODINVILLE — Thirteen-year-old Ella Hulsebus was an exceptionally sporty and spunky girl. She enjoyed playing basketball and was a very active kid. Her mother Katy said Ella, “was always the first one in the pool and the last one out.”

Two years ago Ella suddenly began suffering from terrible migraines and was only able to attend school a couple of hours a week. The major headaches weren’t the only symptom to spring up out of seemingly nowhere.

“She was nauseous 80 percent of the time,” Katy said. “When she was playing basketball she’d have the dry heaves and have to sit out for a few minutes before she was able to get back in the game.”

Ella’s sporadic migraines and nausea kept getting worse so the decision was made to take her to a neurologist, Dr. Plawner, in Totem Lake.

“Dr. Plawner did a cardio workup and an EKG, but both tests came back normal. She thought Ella might be suffering from abdominal migraines, which are most common in kids, but adults can get them too.”

But Ella kept getting worse. Her migraines and nausea were becoming more frequent; so Dr. Plawner suggested she undergo an MRI.

“The initial MRI showed she had a cyst on her pineal gland, but the image wasn’t very clear because Ella was wearing braces,” Katy said. “The metal in her mouth distorted the images, so we had the braces removed and went back for another MRI.”

The second MRI confirmed the cyst, but Katy was told it wasn’t big enough to cause Ella’s reoccurring migraines and nausea.

“As most parents do in a situation like this, I began conducting my own research and came across an article on a kid from Blaine who had the same cyst removed from a neurosurgeon in Houston — Dr. Dong Kim,” Katy said. “So we decided to take Ella to Houston.”

Just prior to making the trip, Katy said Dr. Plawner conducted a test to measure Ella’s blood pressure from sitting, standing and lying down positions.

“She passed that test — but her feet turned blue from lack of blood flow,” Katy said.

However, after not showing any improvement, Dr. Plawner suggested Ella take a tilt-table test, which monitors your blood pressure, electrical impulses in your heart, and oxygen level while you are titled at different angles.

According to MyHeart.Net, when someone goes from a lying down position to standing, about half a liter of blood shifts from the upper body to the lower body.

Problems such as dizziness and lightheadedness can arise when not enough blood can make it back to the heart and then up to the brain to make the body function properly.

“She didn’t pass the tilt-table test,” Katy said.

Dr. Plawner then told Katy Ella was suffering from Postural Orthostatic Tachycardia Syndrome, more commonly referred to as POTS.

“We still kept our appointment with Dr. Kim. We wanted to know if Ella needed to have the cyst removed. While we were there, he confirmed Dr. Plawner’s diagnosis.

“We decided not to have the cyst removed because they are so common, but we are monitoring it.”

There is currently no cure for POTS. Teenagers usually grow out of the disorder by the time they reach their early 20s. POTS symptoms can be effectively managed with a combination of lifestyle and dietary changes, along with medication (Mayo Clinic).

“Ella’s diet is very salty and she takes a cocktail of eight medications and supplements daily. She also consumes at least 4 Liters of electrolytes a day and must be fully hydrated to keep her moving” Katy said. “She attends acupuncture appointments, infusion therapy and physical therapy in the form of swimming with a coach. She’s also doing a weight lifting program with a trainer to increase and promote muscle development and circulation.

“Ella has to limit her activity, however, and be very cautious to not overdo it. She often is in bed asleep at 8:30 p.m. during the school week and shortly after 9 on weekends.

It’s been a long slow process, but Katy said Ella is beginning to turn the corner.

“Its much easier now than it was nine months ago — it takes about a full year of treatment under your belt,” Katy said. "Over the summer, Ella committed herself to get back to school on a regular basis and did and hasn’t missed a day since Thursday (Sept. 26), but she was back on Friday. Ella is the ultimate fighter. We’re going to get through this.”

October is Dysautonomia Awareness Month. An opportunity to help spread POTS awareness is the upcoming 4th Annual Adaptable Dysautonomia Support Network (DSN) Virtual 5K Race. Visit www.eventbrite.com/e/2019-dsn-superhero-virtual-5k-tickets-66638452405 to register. Registration closes Oct. 31.

 

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