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Boston clinic working on solutions as kids with long COVID symptoms struggle to move past virus

Aurora Burt takes a bite of a pretzel and immediately spits it out in the trash.

The Dover 5th grader says she has a hard time finding foods that don’t trigger the “COVID taste and smell” since she contracted the virus around Thanksgiving.

“Like sewage and garbage. And like, oh, like all the grossest things you can think of just like, kind of all together,” Aurora explained when asked how things taste to her.

Her family has a very short list of the things she can tolerate hanging in their kitchen.

“Mealtime is a real stressor,” her mom Colleen Burt explained.

She says the long COVID symptoms shutdown a side of Aurora’s personality. “She was a creative eater, adventurous eater creative cook. She can’t tolerate the smell of cooking anymore,” her mom said.

“It has become a nutritional issue because her list of foods that she can tolerate without sort of gagging is very small. I worry that it’s an affecting her immune system. If it has affected her energy levels, it definitely has affected her mental health.”

Parosmia, where things that should smell pleasant instead smell terrible, is one long term COVID symptom being studied at the Post COVID Program at Boston Children’s Hospital.

“It’s incredibly disconcerting and anxiety provoking for a number of kids when they lose the sense of taste and smell,” said Dr. Alicia Johnston, the clinic’s co-director. Dr. Johnston says the clinic has seen more than 160 pediatric patients.

Some suffer like Aurora from smell and taste issues, many suffer from fatigue, and others complain of brain fog, headaches, and trouble breathing, she said.

“There’s no typical case of long COVID,” Johnston said. “We’ve really taken the approach of trying to direct treatments towards each symptom individually.”

That can mean medication for headaches, occupational therapy for brain fog, and smell retraining for patients dealing with parosmia: gently smelling different essential oils or herbs with familiar scents, while focusing on memories with that scent.

Aurora’s family tried smell retraining on their own, but said she couldn’t tolerate the scents without gagging.

“While the journey may be really long and arduous, children are generally resilient, and they do recover. And we’ve seen many kids who have made really encouraging and hopeful recoveries,” said Dr. Johnston. “We’re very optimistic that this can and does happen.”

She encourages families to get help early if symptoms seem to persist, by reaching out to your pediatrician if your child is struggling after a few weeks.

The Burt family says they’re hopeful more research will lead to better treatments. In the meantime, they say they’re focused on raising awareness.

“Families that are going through this, kids that are going through this, understand they’re not alone,” said Colleen Burt.

“I really just want to help other people, so it’s easier for them,” said Aurora.

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