Sunday , August 14 2022

The voice of a small child was chalked up to acid reflux. Her problem was far more serious.



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"She had never cryed loud enough to bother," Natalia Weil said to her daughter, who was born in 2011.

Although Vivienne had been active in her early months, her voices were diminishing around her first birthday. So he made the quality of his voice, which decreased from normal to raspy to a little more than whisper. Vivienne was also a late speaker: She didn't start talking until she was 2 years old.

Her suburban pediatrician in Maryland initially suspected that the toddler's shame was to blame for respiratory infection, and she was patient patience. But after the problem continued, the doctor found acid reflux and prescribed a drug to treat the voice problems that reflux can cause.

But Vivienne's problem was far more serious – and unusual – than too much stomach acid. The day he learned what was wrong, he is among the worst of Weil's life.

"I had never heard of it," Weil, now 33, said of her daughter's diagnosis. "Most people don't."

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Initially, Natalia, a statistician, and her husband, Jason, a photographer, were reassured by the pediatrician, who blamed respiratory infection for their daughter's voice problem. His explanation sounded logical: On average, young children get seven or eight colds each year.

Weil said that the couple had assumed that Vivienne's voice would return to the normal – and she did not want to exaggerate.

"We were first time parents and we were worried," Weil said, "but we thought we might be worried too much and we should wait. We decided to give it time. From 1 or 2. We did what the doctors said us. "

But Vivienne's grandmother grew increasingly anxious. As Vivienne was slow to speak, her grandmother wondered whether she could have a developmental delay or a speech problem and suggested an evaluation by a speech pathologist.

During a visit in September 2013, the pediatrician prescribed a liquid antacid for the 21/2 year old. The doctor also approved a referral to an ear, nose and throat specialist.

ENT who soon saw Vivienne diagnosed her with dysphonia – a faulty voice that can result from a problem with the vocal chords. She sent her to a pediatric otolaryngologist for a more complete evaluation.

The pediatric specialist listened to her breath and spoke and then arranged an laryngoscopy. The test includes a visual examination of the back of the neck. In some cases, doctors use a thin, flexible tube that has been connected to a small fiber optic camera that is spreading up the nose and down the throat to allow exploration; upper airway.

The procedure, which was recalled by Weil, was traumatic for Vivienne and her parents. The little girl, who was frightened by what was happening, started screaming and had to be held down by a number of nurses so that the doctor could carry out the test.

His results were final – and he explained the reason for Vivienne's long voiceless. He suffered from a rare disease called regular respiratory papillomatosis, caused by two types of human papilloma virus (HPV), a sexually transmitted infection that can be acquired at or before birth. The disease is incurable; it can be treated surgically to remove the tumors that retrieve the voice temporarily. The aim of the procedure is to extend the interval between surgeries while preventing permanent damage to the fine vocal chords.

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HPV is ubiquitous; almost all adults who are sexually active have been exposed to it. Most people clear the infection from their bodies without knowing that they have ever had it. But in some cases two strains, HPV 6 and 11, can cause genital warts: innocent, cauliflower shaped tumors sometimes called papillomas. These warts can occur months or sometimes years after contact.

In some cases, mothers with genital warts may transfer the virus during birth, leading to the development of papillomas in the child's respiratory tract, particularly the larynx. (Two other types of stress are considered "high risk" – HPV 16 and 18 – can cause cervical cancer HPV can also cause oral, anal and punitive cancer.)

The Centers for Disease Control and Prevention estimate that 2 per 100,000 children have RRP, which can be prevented by a vaccine of the name Gardasil. Federal health officers recommend the administration of the vaccine, which was first licensed in 2006, to children aged 11 or 12 before they are sexually active.

The pediatric ENT told the Weils that it was a good thing that they had not waited longer to seek treatment. Vivienne's tumors had grown so big that they threatened her airway.

"I was non-verbal," I remembered Weil, who was then pregnant with her second daughter. 'I thought,' I gave this to my baby. 'I remember sitting in that little room and thinking,' She'll have to deal with this about never. "

Weil said that she had no idea that she had ever had genital warts or had been exposed to HPV. In the car on the way back to her home in Maryland, she said, she was crying as she scrolled through her phone, trying to learn about the terrible disease, fearing that her second child could contracting too.

Shortly before Vivienne's first operation in November 2013, Weil asked for answers from her obstetrician. How, asked, could HPV be lost?

The doctor replied that the smear test was normal in 2009 and 2011. Health officers do not recommend that women under 30 – Weil aged 25 when Vivienne was born – usually have an HPV test as the virus is so common.

"You may have had the virus and then your immune system cleared it so your test was negative in December 2011" – 10 months after Vivienne's birth, the doctor wrote.

Nor is it clear that caesarean section would have prevented the disease. Experts say that it appears that some cases have been contracted in the womb.

Due to her age, Weil was not included in the initial targeting efforts for the vaccine, which focused on preteen women. (Recently, federal health officials approved the latest version of the vaccine, Gardasil 9, which protects against nine types of HPV, for adults up to 45 years of age.) T

– – –

Vivienne's first operation, performed under general anesthesia, involved decomposition, essentially shaking the tumors.

Weil said she remembered walking into the recovery room with her husband to hear Vivienne "crying loud. It was amazing," he said. "For us, this is the best sound in the world."

But as it happens almost always, Vivienne's voice turned our whisper after a few months as the tumors grew back. For the next few years, the two vocal strands were debated at the same time every four to six months.

In March 2018 after her 11th operation, her voice did not return. No physical explanation could be found, and doctors suggested that the case could be due to weakness of a vocal string or psychological factors. For the next six months Vivienne received hypnosis and saw speech therapists not taking advantage.

In desperation Weil posted a video of her daughter on Instagram. She hoped someone – possibly another parent – could get some advice.

Within days, a California woman whose daughter had the procedure suggested trying a different treatment. Instead of unwinding, he recommended finding a doctor using potassium titanyl phosphate laser (KTP). Some experts believe that using the laser is better, because it removes more tumor while reducing the damage to the vocal chords.

"I did a lot of research," Weil said. He found Simon Best, otolaryngologist and researcher at Johns Hopkins who studied the disease and our expert on laser treatment.

Weil said that she had tried unsuccessfully to make an appointment with Best but was told she was not a pediatric otolaryngologist and so does not treat children.

To de-compromise, he searched a medical database, revealed his email address and sent a message to him describing her daughter's case.

Best agreed to see insurer Vivienne and Weil approve the visit outside the network.

– – –

Best associate professor of otolaryngology estimates that he has treated around 100 people, mainly adults, who have a Risk Reduction Plan in his 13 year career. (An adult specialist, we treat patients of all ages with the disease.) Some developed the disease as children. In others, he rose in their 30s and their 40s, a decade after exposure to HPV.

"He has a terrible trend to continue coming back," Best said. One of his patients had suffered 300 operations by the time he was 20 years old. "You can imagine what that is doing to voice quality."

Only one vocal string is best handled at a time to stop webbing, which happens when the vocal chords grow with each other and can damage the voice.

"I was pleasantly surprised that there were not huge scars," said Best of Vivienne, who first saw it in September 2018.

The first laser operation took place on the second gradient vocal string in November 2018; her voice returned, but she remained unsteady. A second operation on the left vocal cord in January 2019 has had excellent results. A few days ago Vivienne had a successful repetitive procedure on her right.

"This is the best she has ever sounded," said her mother, adding that even her girls' squared sound is pleasing.

In the last few months, Vivienne has blossomed, making new friends eagerly and becoming a "happy, bold girl."

"It is said that having an even better voice than I thought it would be," Weil said. A year ago, she had told her mother that a number of classmates had been excluded from his game of "cheerleader."

Best recommends that a voice problem should last longer than a month prompting an examination by "someone who can imagine the larynx."

It is difficult to predict how many surgeries Vivienne might need, he said. It is unlikely that this will only be three as the rule is a re-occurrence. "Everyone has a unique clinical course," he added.

"The earliest RRP is detected, preferably," best noted, before the disease can do extensive damage. T "Often it is neglected for relatively long periods – months or years. And it's not going into the field of diagnostic consideration in children until there are fairly serious effects."

The otolaryngologist remains strongly in favor of the HPV vaccine, which can prevent the disease. Weil said that she intended to immunize her daughters and to have the vaccine herself, which could protect her from other types of HPV.

According to the CDC, only half of American adolescents have been fully immunized. In contrast, Australia, which has promoted free immunization in schools for more than a decade, has significantly reduced cervical cancer and genital warts.

"Although RRP is a rare disease, only from a psychosocial point of view, you can imagine what impact this disease has on families," said Best. "The mothers of these children have a great burden to carry."

This article was written by Sandra G. Boodman, correspondent for The Washington Post.

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