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‘Itch like crazy:’ Edmonton boy battles ultra-rare disease – Red Deer Advocate

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EDMONTON — 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.’”

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.

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.

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.”

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

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.”

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.”

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.”

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

“There is no cure.”

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New Winnipeg restrictions take effect today

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WINNIPEG —
Amid rising COVID-19 case numbers, the Manitoba government has issued more targeted restrictions for the Winnipeg Metropolitan Region, which come into effect on Monday, Oct. 19.

These new rules include:

  • Reducing gathering sizes to five people for both indoor and outdoor public and private gatherings. This excludes household members for private gatherings inside a home;
  • Closing beverage rooms, bars, live entertainment facilities, casinos and bingo halls;
  • Limiting capacity at restaurants and lounges to 50 per cent. Tables can be no more than five people with two-metre distancing;
  • Limiting retail businesses to 50 per cent capacity. Food courts and common areas must adhere to the five-person group size limit;
  • Reducing the number of spectators at sporting activities and after-school events to 25 per cent of a site’s capacity;
  • Reducing capacity at museums, galleries and libraries to 50 per cent. These facilities must also collect all attendees’ contact information; and
  • Gyms and fitness centres must collect all attendees contact information. Everyone at a gym or fitness centre must wear a mask, unless they are doing physical activity.

These restrictions will remain in place for two weeks, at which time the province will reassess the rules.

“At two weeks we are going to need to either extend them or draw back – so we want to make it really clear that the intent of this is strictly time-limited,” said Dr. Brent Roussin, chief provincial public health officer, at a news conference on Friday, Oct. 16.

These new restrictions are in addition to the current rules in place for the Winnipeg Metropolitan Region, which includes mandatory masks in all indoor public spaces.

The Winnipeg Metropolitan Region has been under orange or restricted levels on the pandemic response system since Sept. 28.

“These restrictions will all be enforceable under the law,” Roussin said.

“We’ve issued fines in the past when required and we will be looking at ways of stepping up enforcing efforts in the coming weeks.”

As of Sunday, Oct. 18, there are 1,436 active COVID-19 cases in Winnipeg, the highest of any region in the province.

– With files from CTV’s Danton Unger.

Source:CTV

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Nova Scotia businesses won’t survive another year of COVID-19 restrictions

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The Canadian Federation of Independent Business say many Atlantic Canada businesses are on the brink of bankruptcy.

According to their most recent study, 59 percent of Nova Scotia businesses would struggle to survive another year of COVID-19 business restrictions.

Jordi Morgan, Vice President of the Atlantic region for the CFIB, told NEWS 95.7’s The Rick Howe Show that without continued government support, many  businesses in the province will slip below the surface, according to research CFIB has been conducting on business revenues ever since the pandemic began.

“In Nova Scotia, we’re looking at about only 33 percent normal or better,” said Morgan of businesses’ revenues compared to before the pandemic began. “So that means the remainder are below that.”

According to Morgan, the sectors most impacted are arts, hospitality and natural resources industries.

He added the most recent figures show 8 percent of businesses in the province are actively considering bankruptcy or winding down.

With the current revenue projections, only about 35 percent of Nova Scotia businesses would survive the year with their current earnings.

Morgan says the provincial government needs to get creative and ease business restrictions to make life easier for buisnesses as they brace for a potential second wave of COVID-19.

Source: – HalifaxToday.ca

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COVID-19 exposure on Toronto to Halifax flight

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Nova Scotia Health advises of a potential exposure to COVID-19 on a flight from Toronto to Halifax.

The flight was Air Canada flight 604 which flew from Toronto to Halifax on Oct. 15, departing from Toronto at 8 a.m.

Passengers in rows 21 to 27 in seats D, E and F are more likely to have come into close contact with the virus. Nova Scotia Health asks passengers in these seats to continue to self-isolate as required, monitor for symptoms and call 811 for advice.

Anyone exposed to the virus on this flight could develop symptoms up to and including Oct. 29. Passengers who were on this flight but not in the designated seats should still continue to self-isolate as required and monitor for symptoms until Oct. 26.

COVID-19 symptoms include:

Fever (i.e. chills/sweats) or cough (new or worsening)

OR

Two or more of the following symptoms (new or worsening):

  • Sore throat
  • Runny nose/nasal congestion
  • Headache
  • Shortness of breath

Passengers who were on this flight but not in the designated seats and are experiencing any of these symptoms should call 811 for assessment. They also should not go directly to a COVID-19 assessment centre unless directed to do so by 811.

When Nova Scotia Health Public Health makes a public notification it is not in any way a reflection on the behaviour or activities of those named in the notification.

On Oct. 12, there were potential exposures to COVID-19 on two other Air Canada flights. A taxi ride on the same day was also exposed to the virus.

Currently, anyone travelling to Nova Scotia from outside of the Atlantic provinces is required to self-isolate for 14 days after arrival.

All Nova Scotians are advised to continue monitoring for COVID-19 symptoms and are urged to follow Public Health guidelines on how to access care. Up to date information about COVID-19 is available at novascotia.ca/coronavirus.

Source: – HalifaxToday.ca

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