Sometimes parents hear an assessment or a diagnosis about their child that just doesn’t feel right. But it can be easy to listen to a voice of authority, such as a principal or pediatrician, and doubt ourselves.
But after countless visits to doctors, many frustrating years and one startling revelation, a Chester mother hopes to inspire us to trust our instincts and advocate loudly for our kids.
“You just have to keep plugging, you have to keep hoping, keep pushing, keep researching,” says Liz Squire-Vigue.
Frantic about her child’s declining health, she read books and challenged experts until she found a solution that has turned her daughter’s life around.
“She would literally melt in front of my eyes. She didn’t have the ability to support herself,” says Squire-Vigue, recalling the day her 8th grader ran a mile in gym class. “She came out into my car and fell apart. For a week she was out of school. All she could do was sleep.”
Doctors first suspected a lactose or gluten allergy.
“I was feeling sick all the time, kind of like flu-like symptoms,” remembers Lotty, now 17, as she describes the sensation of living in a fog. “During a class, I would be studying and then I would just not be able to think anymore.”
Eventually it was determined that Lotty suffered from autonomic dysfunction, a rare disease of the nervous system seen mostly in the elderly. Squire-Vigue, a Realtor and spiritual practitioner, took time off from work to accompany Lotty to the Mayo Clinic in Minnesota, one of the few facilities studying this problem in teens. But symptoms persisted and worsened.
“We just knew something would break,” says Squire-Vigue tearfully. Then she stumbled upon a new, rarely used and controversial treatment online. Within weeks, she traveled to California where Lotty underwent a procedure, only performed by one doctor in the United States, for dysautonomia brought on by such diseases as Parkinson’s or Lyme, which Lotty had as a child.
Transvascular Autonomic Modulation is balloon angioplasty of the jugular vein that also involves the application of external pressure to re-set the nervous system without the use of stents. Doctors cleared the teen’s vein, almost entirely blocked by a membrane. “I came out and my cheeks were pink,” says Lotty. “Normally I’m a very pale person because the blood hadn’t been getting to my face.”
Despite skepticism that it would work, Squire-Vigue believes she made the right decision.
Just three months later, Lottie recently performed in her high school’s production of “Brigadoon.” She is also preparing to graduate and head off on a summer program in the Amazon rainforest, an adventure she once thought she could never take.
“I’m excited,” she says, smiling, thankful for her mom’s strength when she felt so weak. Squire-Vigue, empowered by her diligence, finally feels peace: “I’ve got a new kid! It’s a miracle, a true miracle.”
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