Saturday , 19 June 2021

Bonnyville teen Sofia waits to see if she’ll be allowed the treatment for rare disorder

Sofia laying in a hospital bed during her several treatments for PANS/PANDAS.

Sofia is 17 years old, but not focused on graduating from high school or enjoying extra-curricular sports.

Sofia is away from her family in Bonnyville at a psychiatric ward in Edmonton.

Despite growing up healthy, towards the end of grade six she started showing signs of minor OCD, tics, separation anxiety and poor sleeping.

Although she passed grade six with honors, the issue did not go away.

After years of tests, trips, and doctors, Sofia was diagnosed with PANS/PANDAS last year, which is a subset of Obsessive Compulsive Disorder. It’s a condition with few successful treatments and grave consequences.

“If the encephalitis gets too bad, she could die,” said Sofia’s grandmother, Leonie Poole.

“The medication is scary. Now on the PANDAS network a couple weeks ago, there was a big writeup that youth suicide, a lot of them stems from PANS/PANDAS. It’s more life-threatening through suicide.”

The illness gives her ticks, violent mood swings, and occasionally she’ll lose control of swallowing.

The teenage girl went on antibiotics to make sure there was no infection, changed her diet to gluten-free, and started IVIG intravenous treatments to boost up her blood’s immune system.

“Then they just tried a couple months ago what they call plasmapheresis,” said Poole.

“They take all her blood out, they put it through a machine that takes out all the immune cells because they want her to have no immunity because it’s her own immunity that’s the culprit.

“They take out all her immune cells. At that time, they [Sofia] have to be very careful they don’t catch anything because they could die. They have no immunity.

Sofia did five infusions in two weeks.

“She was like a new person. No tics, no OCD, no nothing. She was intelligent and just like a normal person.

“It lasted ten days and then there was a cold around.”

Sofia got sick and much worse.

With few options left, her pediatrician at the Stollery Children’s Hospital recommended Rituximab, but AHS does not allow the drug in the province.

“He told her that and we started looking at this Rituximab and they use it in the States. It’s protocol if you’ve gone through all these to use it.

“But there’s a lot of bad side-effects of Rituximab, so maybe that’s the reason we’re more leery of using it here. But they use it for other illnesses. They use it for rheumatoid arthritis,” said Leonie.

“It’s worth the gamble…the real bad cases of Rituximab are 1/10,000 less of an issue. Of course, the doctors are going to be cautious,” said Sofia’s grandpa, Don Poole.

The hope is that Sofia could be injected with Rituximab four times over the course of a year and be cured.

Rituximab is a costly treatment, which would run up at least $10,000 a shot if other parties helped cover some costs.

The family could look at going to the United States to get the treatment too, but if they couldn’t get the medicine, then they wouldn’t be allowed to get treatment again in Alberta.

Also, Leonie said if Sofia’s doctors were to get the OK with the Canadian company that manufactures Rituximab for infusion, then the family could pay for the four necessary treatments despite it might not be as a usual treatment in Alberta.

That’s one reason why Sofia’s family has started a gofundme page started to help Sofia.

“All we want is to have our daughter healthy again.”

About Michael Menzies

Menzies is the editor-at-large for Connected Media Inc. Born and raised in Vermilion, he started in May 2018 during his NAIT Radio and Television practicum and reports on local politics, sports, and community issues. He became the Bonnyville Pontiacs play-by-play voice during the 2019-20 season. He also comments on provincial and national issues. Menzies hosts Connected! Evening Monday-Thursday at 5 o’clock. He also likes to buy books and read some of them.