Vivienne Weil was suffering from ongoing respiratory papillomatosis.
Vivienne Weil was an unusual child.
"She was never shouting loudly for worrying," he said Natalia Weil of her daughter, who was born in 2011. t
Although Vivienne babbled was happy in her early months, her strong voice was not going down at the time of her first birthday. Thus did her voice quality, which reduced between normal and ordinary to a little more than scissors. Vivienne was also a long speaker: She didn't start talking until she was 2.
Her suspected pediatrician Maryland was suspicious at first that a respiratory disease was blaming for the child's surprise, and advised patience. But after the problem went on, the doctor found that he was reacting to full reactivity and ordered drugs to treat the voice problems.
But the Vivienne problem was far more serious – and unusual – the stomach excessive stomach.
The day he learned what was wrong, among the worst of Weil's life.
"I never heard of it," said Weil, 33, now looking for his daughter. "Most people are not."
First, Natalia, a statistician, and her husband, Jason, stimulated the psychologist's mind, inspired the respiratory disease for the daughter's voice. There are clear explanations of pronunciation: Young girls receive about seven or eight colds a year.
Weil said that the couple decided that Vivienne's voice would automatically return – and they did not want to cross each other.
“We were parents at the first time and we were concerned," Weil said, "but we thought we might be worried and that we should wait. We decided to allocate time. We did not know what children spoke at this age. 1 or 2. We just did that and the doctors told us. "
But Vivienne's paternal grandmother was becoming increasingly anxious. As Vivienne was slow to talk, her grandmother was asking if she had a progressive delay or a complex problem and suggested an assessment by a speech pathologist.
When they visited in September 2013, the doctor gave the child a valid gold bone for 21/2 years. The doctor also agreed that someone should be put to a ear specialist, nose and throat.
ENT found Vivienne shortly afterwards to have dysphonia – a weak voice which could come from problems with voice strings. He sent her a pediatric otter for a more comprehensive assessment.
The pediatric expert listened to her heard and talked and then recorded in a laryngoscop. The test includes a visual check on the back of the neck. In some cases, doctors use a thin, flexible tube that is attached to a miniature optical camera that is wound up the nose and down the neck to investigate the flight to above.
The approach, Weil back, was very difficult for Vivienne and her parents. The little girl, who was afraid of what was happening, started screaming and several nurses would have to be kept down until the doctor could try the test.
The outcomes were positive, and he explained the reason for Vivienne's long-term voice. She suffered from a rare disease called recurrent respiratory papillomatosis, which causes two strains of the human papilloma virus (HPV), which can be found at or before birth. The disease is reach; it can be treated by surgery to remove the illnesses which put their voice back for a while. The aim of a cure is to increase the time between surgeries as they cause permanent damage to their speech fingers.
HPV is standard; almost all adults have been active. Most people clean the disease from their bodies without knowing that they have it. But in some cases two types, HPV 6 and 11, can be caused by warts: illnesses, sometimes caused by rushes, called papillomas. These terms may apply for a month or sometimes years after it has appeared.
In some cases, genital warts can give the virus at childbirth, and can result in the development of papillomas in the child's respiratory tract, especially the larynx. (Two other species can be thought to be a “big risk” – HPV 16 and 18 – that could give breast cancer.
The Control of Illness and Prevention Centers say that 2 in every 100,000 children have an RRP, which can be stopped by Gardasil vaccine. Federal health officers suggest that vaccination is given, which were first licensed in 2006, for children at 11 or 12 before they are active.
The pediatric ENT told the Weils that it was a good thing that they were no longer waiting for a cure. Vivienne's wilderness had become so big that she was putting danger on the way.
I remembered Weil, who was pregnant at the time with her second daughter. “I thought,“ I gave my child to this. 'I remember sitting in that small room and thinking,' & that's how I was sitting. She must deal with this forever. # 39; "
Weil said that she had no idea that she had generations of generations or that she had been near HPV. In the car on the way back to her home in Maryland, she said that she was carrying as she swept through the phone, trying earnestly to learn about the disease, horrible t her second child would take it also.
Shortly before the first Vivienne surgery was carried out in November 2013, Weil asked answers from her obstetrics. How did she ask if HPV was lost?
The doctor answered that they had made berries in 2009 and 2011 as usual. Health officers do not recommend that women under 30 – Weil 25 when Vivienne was born – will usually get an HPV test because the virus is so common.
“You might have had your virus and then your defense system was removed and so your test was negative in December 2011." – 10 months after Vivienne's birth, the doctor wrote.
It is also not clear that Caesarean's delivery would have prevented the disease. Experts say that some issues have been reported in utero.
Because of her age, Weil was not included in her initial attempts for vaccination, which was aimed at pre-school girls. (Federal health officers recently approved the latest version of the vaccine, Gardasil 9, which protects from nine HPV types, for adults up to 45.)
Vivienne's first operation, played under a common anesthesia, included debris, a procedure that takes her away from the masses.
Weil said that she remembered walking into the recovery room with her husband to hear Vivienne crying high. "Well, it is the best sound in the world."
But as always, Vivienne's voice had become scissors after a few months when the shoes were back. For the next few years she managed to flourish at the same time as her voicemails every four to six months.
In March 2018 after her 11th act, her voice did not return. There was no corporate explanation and doctors suggested that the cause could arise from a weakness in vocal fireplaces or psychological factors. For the next six months Vivienne was bereaved and became aware that healers would not get an opportunity.
In a desperation Weil sent a video of her daughter on Instagram. She hoped someone else – perhaps another parent – would have some advice.
Within days, a California woman who has infected her daughter praised her for other treatments. Instead of vitality, she recommended a doctor who uses potassium titanyl phosphate (KTP). Some experts believe that using the laser is better, because it takes away more pressure and reduces voice damage.
"I did a lot of research," said Weil. She found Simon Best, an otolaryngologist and Johns Hopkins researcher who studies the disease and is an expert in laser therapy.
Weil said that she tried to do it with Best but she was told that she is not a depressive otter and does not deal with children.
She failed, found a medical database, presented her email address and sent a message to him about her daughter's case. T
The best one agreed that the insurer Vivienne and Weil would agree the tour outside the network.
Best, a fellow professor of otolaryngology, believes he has been working in a 13-year job for around 100 people, mostly adults, who have RRP. (Adult specialist, he treats patients of all ages with the disease.) Some developed the disease as children. In other places, it rose in the 30s and 40s, ten years or so after the HPV sight.
"It tends to be back," said the best one. One of his patients had 300 worked at the time he was 20. "You can think about that adding quality quality."
The best thing isn't dealing with a single voice-out at the same time to stop web-forms, which occur when vocal voices grow together and they can destroy their voice.
"It was a great surprise that there was not a lot of scarce," said the Best of Vivienne, which he first saw in September 2018.
The first laser surgery on the right room cord took place in November 2018; her voice returned, but she stayed wily. One of the highlights of vocal singing has been the first of its kind in January 2019. Vivienne was successful in a successful re-match on her right side.
"This is the best thing she has ever said," said her mother, saying that her daughters have an intriguing sound of sound.
In the last month, she said, Vivienne has grown, making new friends and becoming a "little girl with a little coat."
"She says that there is a better voice than she thought it would be," said Weil. A year ago, she was told her mother that a number of pupils in the class had been out of the game "cheerleader."
The best suggestion suggests that a voice problem lasting longer than a month should examine by “someone who can affect the larynx. ”
It is difficult to predict how many directories there are for Vivienne, he said. It is unlikely that only three people will be governed by the repetition. "Everyone has a special clinical course," he said.
“The earliest RRP is sought, the better,” he notes best before the disease can cause severe damage. “Often it is forgotten for quite a long time – months or years. And it doesn't go into the judicial considerations in children so that it does have any negative effects. "
The otolaryngolog is still a strong HPV vaccination keeper, which can prevent infection. Weil said she intends to import and bring her own milkmaid, which can be protected against another strain of HPV.
According to the CPC it is only half the American teenage population who has been immunized. In contrast, Australia, which has introduced free vaccines in schools for more than 10 years, has significantly reduced breast and bowel cancer.
“Although RRP is a rare disease, just from a social point of view, you can think about the effect these illnesses have on families,” said the best one. the said children. "
(Except for the heading, this story was not edited by the NDTV staff and is published from syndicated lunch.) T
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