Weyburn mom frustrated by daughter’s medical mystery

Mother hopes to form support group for parents in similar situation

(Photo – Getty Images)

A Weyburn mother is baffled and frustrated at a mysterious condition that has afflicted her 14-year-old daughter, and it seems to have affected a number of girls of the same age in the city.

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Becky Grad is searching for answers for what is afflicting her daughter Payton, and hopes to set up a support group for other parents in the city area whose daughters are experiencing Tourette’s and other neurological symptoms that have doctors stumped as to what the cause is.

The mysterious illness came upon Payton very suddenly on the morning of Nov. 28. She was in the family’s kitchen and she all of a sudden lost her eyesight and her hearing, and her father rushed over and caught her as she fainted.

Payton was taken to the hospital, but they couldn’t find anything wrong with her and she was sent home.

An appointment was set up with a pediatrician, who told Becky and Payton “it was just anxiety.” In the days that followed, her condition got worse as she developed a tic, and she progressively worsened with a loss of her eyesight, hearing and mobility, with times when she was unable to talk.

“We saw this doctor probably four times and every time, the doctor dismissed us, and she continued to get worse,” said Becky, adding that Payton began to have seizures. “Her whole body was just shaking uncontrollably,” and she had painful pressure on the back of her neck and head.

She was referred to a neurologist, and in the two-week wait for that appointment her condition declined, and was not allowed to attend school or her sports any longer.

After getting no help from the neurologist or any other doctor they saw, they decided to make the drive to Edmonton and go to the Stollery Children’s Hospital there. Payton was immediately admitted, and a series of tests were done in an effort to pinpoint what was happening.

“Nobody here seemed to be listening to us. We had seen four doctors and a neurologist, and they all told us there was nothing wrong with our daughter,” said Becky, noting she underwent extensive testing for three days in Edmonton before they landed on a diagnosis of Tourette syndrome, with a functioning neurological disorder, as some of her symptoms were not related to Tourette’s.

Part of the mystery is that the appearance of Tourette syndrome is not typical to teenaged girls. According to the Mayo Clinic’s web page, males are three to four times more likely to development the syndrome, and the average age is six years old. Tics can appear between the ages of two and 15.

The tests Payton had included an EEG, echo-cardiogram, CAT scan, MRI, a copper urine test and extensive bloodwork, none of which helped doctors pinpoint the cause of the neurological symptoms she was experiencing.

Returning to Weyburn, Becky found out that Payton was not alone, as her massage therapist, Amanda Skogberg, also had a daughter with similar symptoms — and hers were even worse.

Amanda’s daughter Jorja went through a similar ordeal of getting tics and declining health to the point she now has no use of her legs, and her seizures, outbursts and tics have become more violent, causing bruises and lots of headaches.

After her legs stopped working, Jorja was put on crutches, and after 10 days, an occupational therapist fitted her for a walker, but after a couple of days she got progressively worse until she was unable to stand at all.

She was admitted to the Jim Pattison Children’s Hospital in Saskatoon on May 31 to have more tests. “We’ve had lots of people come and see her, and we are still awaiting some answers, but nothing hopeful has come out of it yet,” said Amanda.

Like Becky, she has talked with other parents and have found out there are several other girls of the same age in Weyburn with varying degrees of Tourette’s.

“I would like to get together and talk with the other parents, and I think having all of the girls get together might help everyone out. As parents, we can talk and see if there’s any commonalities or maybe one doctor has said something that another doctor hasn’t,” said Amanda. “I know personally I am scared and heart-broken, watching my daughter progress the way she is, and I am lost as to what to do next.”

Becky also feels that a support group would be very helpful, and hopes that getting word out about this might alert other parents whose daughters may be going through this ordeal without any treatments or answers, an affliction that so far has only appeared in girls, not boys.

“Two other moms and I are starting a support group so they know they’re not the only ones going through this, and hopefully we can doctor together or find a similarity,” said Becky, pointing out these symptoms seem to have hit all of these girls around the same time in the same way, with tics that gradually worsened.

Payton has been put on a medication for her Tourette’s, a drug usually used to treat ADHD, and it has kept her in a stable condition so she isn’t getting worse, but isn’t really improving either.

Becky noted the other girls experiencing this issue have been tested repeatedly for COVID, and have all had EEGs.

Her daughter, and many of the others, have been told that this issue is all in their head and they just need to try harder to get over it.

“Why would any kid choose this?” asked Becky. “They have no answers and were very blunt about this. Maybe we could get everybody together, or somebody can help us figure this out, because we would love for this to stop.”

For anyone wishing to be a part of the parents support group, contact Skogberg by email, Skogberga@hotmail.com, or call or text her at 306-533-0639. Becky Grad’s contact number is her cell, at 306-861-9761.

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