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Edmonton boy battles rare disease that makes him ‘itch like crazy’ – Global News

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Armando Perez was only three months old when he got itchy.

His mom, Alexandra Perez, says it wasn’t normal scratching that could be fixed with a cute pair of baby mittens. It was so bad that there were blood stains on his bedsheets and scabs on his little arms and legs.

At first, she thought Armando might have an allergy.

“I tried different laundry detergents and different body washes, but he was still itchy,” recalls Perez, as the now 2 1/2-year old and his big brother and little sister play with their grandpa in the downstairs of their Edmonton home.

“Then he turned yellow. I was like, ‘Well, that’s not normal.’”

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She says she took the boy to see a doctor, blood tests were ordered and they came back “totally out of whack.” The doctor sent Armando to a specialist and he was admitted for a week to the city’s children’s hospital for more testing.

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Perez and her husband, Walter, soon found out their son has progressive familial intraheptic cholestasis — an ultra-rare genetic liver disease that affects one in every 50,000 to 100,000 children born around the world.

Dr. Cara Mack, a pediatrician at Children’s Hospital Colorado, says there are 40 to 80 cases of the disease diagnosed each year in the United States. And there are six different types.

Armando has Type 2, which is caused by a gene mutation that decreases bile flow.






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Mack, who hasn’t treated Armando, says 100 per cent of Type 2 patients are symptomatic.

“Because of the fact that bile acids are stuck in the liver … that directly damages the liver,” says Mack, who notes it leads to scarring and eventually cirrhosis.

Mack says it also causes growth delays because children aren’t able to break down fats or absorb Vitamins A, D, E and K.

“You get significant deficiencies in those vitamins that can lead to, for example, significant bleeding,” she says. “If you are Vitamin D deficient, you can have thin bones and fractures.

“The last major symptom you get is severe itching because the bile acids are stuck inside the liver. They go backwards into the bloodstream and accumulate in the bloodstream.”

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That causes children to “itch like crazy,” she said.


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The itching continues day and night, which prevents many children from getting a good night’s sleep. It can even limit their appetite.

“It impacts every aspect of their life.”

Perez says she was shocked to learn that Armando has the rare genetic disease.

Both she and her husband are carriers of the gene that causes it, and there’s a 25 per cent chance of passing it on to a child. Their two other children don’t have the disease.

“Armando is the only one we know of in Alberta,” she says. “We only know of five other kids in Canada, so six in total that we know.”

Perez says Armando was put on a special formula with a fat he could absorb and he took vitamins and several different medications.

“He did improve so he wasn’t jaundiced anymore.”


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But, she says, her happy little boy is still scratching.

“The itch that comes from it is so intense and extreme,” explains Perez. “It’s constantly all the time, internal, so it can’t be taken away. He’s just always, always itchy.”

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Dealing with dry and itchy winter skin


Dealing with dry and itchy winter skin

Armando is to start a clinical trial soon that could address the itching.

“It doesn’t do anything for the progression of the disease, but it will help with his symptom of being itchy, which is his main problem,” says his mom.

In the meantime, his parents will continue to watch for signs that he’s getting sicker: losing weight, turning yellow, an inflamed belly.

“It’s hard to watch him when you can’t do anything.”

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Perez says it’s even more difficult knowing Armando is likely to need a liver transplant before he turns 10.

“There is no cure.”

© 2019 The Canadian Press

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B.C. call centres to book vaccines will 'do better' after hectic first day: minister – North Shore News

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VANCOUVER — British Columbia’s health minister promised to “do better” on Monday after call centres to schedule vaccine appointments were overwhelmed on the first day of booking.

Adrian Dix said there were 1.7 million calls in less than three hours after the phone lines opened for people over 90 and Indigenous elders over 65 to book their appointments.

Dix said he believed that people who were not yet eligible for the COVID-19 vaccine were flooding the lines, but he also acknowledged that more staffing was needed.

“It’s really important in order to allow those over 90 to get their appointments that we only call when our age group becomes open for calling,” he told the province’s COVID-19 briefing.

“It’s also important that we do better. I know that people have called in and have waited a long time today.” 

Dix said that more resources would be added in the coming weeks, as more age groups become eligible to call to book their vaccines.

People born in 1936 or earlier can start calling for appointments on March 15 and those born in 1941 or earlier can start to schedule their immunizations March 22.

Fraser Health was the only authority to launch an online booking platform on Monday, but Dix said a web-based system would become widely available on April 12.

Some residents with elderly parents said they spent hours redialing their health authority’s number and only got a busy signal or a recorded message telling them to call back later.

Julie Tapley, whose 90-year-old father lives in the Vancouver Coastal Health region, said she was frustrated that the authority had not yet established an online booking system.

“I just want to get in the queue and start the process so that (my parents) can return to their normal lives.”

B.C.’s provincial health officer, Dr. Bonnie Henry, said creating an online booking system is “quite a large project” and Fraser Health was the only authority with an existing platform.

Of about 80,000 people eligible to book appointments this week, roughly 26,000 have already received a shot, so a relatively small number of people should be calling, Dix said.

He said about 10,000 appointments were booked as of Monday afternoon and a “significant number” of those were scheduled through the Fraser Health online site.

Dix urged eligible residents and their families to keep calling in the coming days. There are plenty of appointments available and it is not a “first-come, first-serve” system, he said.

Although B.C.’s case numbers have been on the rise, Henry said some restrictions would be eased in the coming weeks as the weather warms and immunizations ramp up.

Outdoor gatherings, larger meeting places and layers of protection such as masks will still be recommended, she said.

“I like to think of it as slowly turning up the dial again rather than flicking a switch,” she said. 

She also said she hopes to see the return of sports and in-person religious ceremonies within weeks.

Officials have been developing a plan with faith leaders to enable the gradual return of in-person services, as there are important dates in many religions coming up, Henry said.

A B.C. Supreme Court judge reserved his decision on Friday on a petition filed by three Fraser Valley churches who argued that a ban on in-person services violates charter rights.

Henry reported on Monday 1,462 new COVID-19 cases and 11 deaths over three days, pushing the death toll to 1,391 in the province.

She said there was one new outbreak in a long-term care home, the Cottonwoods Care Centre in Kelowna, where a high number of residents and staff had already been vaccinated.

The flare-up serves as a reminder that while vaccines are effective and prevent severe illness and death, they don’t necessarily mean that all transmission will be stopped, she said.

There have been 144 new cases that are variants of concern, bringing the total to 394 confirmed cases. Officials still do not know how about a quarter of the cases were acquired.

Henry became emotional when quoting Chief Robert Joseph, a knowledge-keeper with the Assembly of First Nations.

“We will celebrate our lives again, dream our dreams again and watch our children regain their hope,” Henry quoted him as saying, with tears in her eyes.

“That’s what we can look forward to in the coming months.”

This report by The Canadian Press was first published March 8, 2021. 

Laura Dhillon Kane, The Canadian Press

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U.S. issues advice to those fully vaccinated, but no shift in Canada yet – BayToday

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New U.S. guidelines say people fully inoculated against COVID-19 can drop some precautions when gathering with others, but at least two provincial health ministers say existing public health advice holds for now.

The Centres for Disease Control and Prevention said Monday that Americans who have waited two weeks since their second required shot can spend time with other immunized people indoors without masks or social distancing.

The same applies to gatherings by those at low-risk of severe disease, such as fully vaccinated grandparents visiting healthy grandchildren.

The U.S. guidelines recommend that fully vaccinated people continue to wear masks, avoid large gatherings and physically distance when in public.

British Columbia Health Minister Adrian Dix said Monday that physical distancing and other public health guidelines will be around for some time.

He said about 15 per cent of B.C.’s eligible residents are expected to be immunized by the end of the month, which is “nothing like herd immunity.”

“The future is bright, but we can’t live the future right now. We’ve got to live the now right now.”

Dix does expect visiting restrictions to be loosened in B.C.’s long-term care homes this month as about 90 per cent of residents and staff have been vaccinated.

University of Alberta infectious diseases specialist Dr. Lynora Saxinger said evidence on which the U.S. health agency based its advice is “very much in evolution” and such recommendations might not work everywhere.

Virus variants with the potential to break through vaccine protection are also a “wild card,” she said.

But Saxinger said the principles underlying the U.S. guidance make sense, especially since the initial vaccine rollout has targeted older individuals, many of whom have been kept away from their grandchildren for almost a year.

“They’re basically taking a balance-of-probabilities approach to say that if you’ve received vaccine, you should be highly protected against severe disease. Therefore this should be hopefully OK.”

Ontario Health Minister Christine Elliott said her province is still recommending people take precautions with gatherings and will take its cues from the National Advisory Committee on Immunization.

Ontario reported 1,631 new cases in its latest update, but said the higher-than-expected count was due to a system “data catch-up.” The seven-day average for new cases was at 1,155.

There were also 10 more deaths linked to the novel coronavirus.

Ontario lifted stay-at-home orders in Toronto, Peel Region and North Bay on Monday — the last three regions subject to the government’s strictest measures introduced two months ago.

Alberta also loosened some rules for banquet halls, community halls, conference centres, hotels, retail shops, performances and post-secondary sports, as hospitalizations stayed well below the provincial target of 450.

Health Minister Tyler Shandro said he believes it is safe enough to immediately ease more restrictions

The province reported 278 new cases of COVID-19 and six additional deaths. Six cases of the more contagious variant were also detected, bringing that total to 659. There were 254 people in hospital.

And residents in five regions of Quebec, including the capital, were again able to eat in restaurants and work out in gyms.

Restrictions remain in place in the Montreal area due to fear that variant cases will cause a spike in infections and hospitalizations.

Quebec reported 579 new cases in its update. New daily infections had been above 700 for the five previous days. The province also recorded nine more deaths.

All of New Brunswick shifted to a lower pandemic response level Monday. That means a circle of 15 regular contacts can socialize, up from 10. The Atlantic province had five new cases and 36 active ones.

Saxinger said a “judicious and slow” reopening is the safest approach.

She noted that many countries have seen their case counts come down, but the proportion of more contagious variants is higher, planting the seeds for a spike.

“We know that it’s possible that the variants can be responsible for another surge, that a variant surge is harder to contain and you need longer and more stringent restrictions to contain them.”

Also Monday, Prime Minister Justin Trudeau announced that Thursday will be a “national day of observance” to commemorate the 22,000 people in Canada who have died from COVID-19 and to acknowledge all the ways the virus has changed our lives in the last year.

This report by The Canadian Press was first published March 8, 2021

— With files from The Associated Press

Lauren Krugel, The Canadian Press

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B.C. reports 1,462 new COVID-19 cases over three days, 11 deaths – Globalnews.ca

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B.C. reported 1,462 new cases of COVID-19 over three days along with 11 deaths.

There were 545 cases from Friday to Saturday while 532 cases were reported from Saturday to Sunday, and 385 from Sunday to Monday.

Of the new cases, 407 were in the Vancouver Coastal Health region, 802 were in the Fraser Health region, 72 in Island Health, 79 in Interior Health, and 102 in Northern Health.






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Millions of calls received as phone lines open for B.C. vaccination registration


Millions of calls received as phone lines open for B.C. vaccination registration

Provincial health officer Dr. Bonnie Henry said 144 of the new cases involved variants of concern, bringing the total number of variant cases to 394. The majority of those cases are linked to the B.1.1.7. variant first identified in the U.K.

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The number of active cases linked to COVID-19 variants jumped to 87. On Friday, the province reported just 12 active cases involving variants.

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The number of people in hospital with COVID-19 dropped by 15 to 240. Sixty-six of those patients are in critical or intensive care, a number that remains unchanged from Friday.

There are 4,854 active COVID-19 cases in the province while 8,723 people are in self-isolation due to possible exposure to the novel coronavirus.

The 11 deaths bring the province’s COVID-19 death toll to 1,391.

The update comes after the opening of British Columbia’s call centre to book COVID-19 vaccination appointments.


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B.C.’s mass COVID-19 immunization plan begins Monday


B.C.’s mass COVID-19 immunization plan begins Monday

Dix said the appointment booking line received 1.7 million calls as of 9:40 a.m. Monday despite the fact that only about 82,000 people — those born in 1931 or earlier and Indigenous people born in 1946 and earlier — are eligible to receive an appointment at this time.

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Many of those same people have already received a vaccination in long-term care.

“This is not the time to call in if you are not calling for someone over the age of 90 or an Indigenous person 65-plus,” Dix said.

“This is not the time to call in.”


Click to play video 'Dr. Bonnie Henry says British Columbians could see an easing of some COVID-19 restrictions'



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Dr. Bonnie Henry says British Columbians could see an easing of some COVID-19 restrictions


Dr. Bonnie Henry says British Columbians could see an easing of some COVID-19 restrictions

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Upward trend continues as B.C. reports 634 new COVID-19 cases, four deaths

On Friday, B.C. reported 634 new cases of COVID-19 along with four deaths.

— With files from Simon Little and Richard Zussman

© 2021 Global News, a division of Corus Entertainment Inc.

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