Posted on 08/21/2015 1:08:59 AM PDT by Kaslin
"Are you sure?" I asked my daughter before writing this column.
"Yes," she said resolutely.
Veronica is profoundly grateful for all the prayers, kindness and advice from strangers, friends and family alike that she received earlier this summer when I first told you about her plight. We hope sharing the rest of her story can help pay it forward in some way.
In May, she stopped breathing normally. Describing the condition in words cannot adequately capture how torturous it was: She felt air hunger with every inhalation. At first, it looked and sounded like a gentle sigh. But the small gasps soon morphed into a horrible stridor, up to 30 to 40 times a minute, every minute, every hour, every day.
As we faced agonizingly long wait times to see doctors, we turned to crowdsourcing and CrowdMed.com. We heard from many other parents of children with mystery ailments and chronic illnesses on similar all-consuming searches for answers. Was it anxiety? Vocal cord dysfunction? A pulmonary embolism? Lyme disease? Food allergies? Along the never-ending journey, Veronica was diagnosed with postural orthostatic tachycardia syndrome and joint hypermobility, which led to an inconclusive side investigation into Ehlers-Danlos syndrome.
The days and weeks passed in slow motion. Veronica remained bedridden. She lost sleep. She lost friends. She felt like a zombie and battled brain fog. An aspiring doctor, she had to quit her volunteer job at a local hospital's oncology ward. Instead, she spent the summer as a patient in a blur of medical clinics and diagnostic labs, shuttling between experts in cardiology, pulmonology, rheumatology, genetics and neurology.
Some of the more creative interventions were cause for family amusement -- inhaling helium and blowing bubbles, for example. And then there were the drugs. The ones that made her gain weight and lose weight. The ones that gave her heart palpitations and hyperactivity. The ones that caused painful backaches, scary tremors, intermittent numbness, fainting and memory loss.
In the end, the mainstream medications she was prescribed did little to nothing to alleviate the gasping episodes. (What eventually did provide relief is an entirely separate story.)
Two months after the daily daymares started, in early July, Veronica was finally weaned off the last of her traditional meds. The gasping episodes waned, but never disappeared. Instead, they morphed into an extreme combination of other motor and vocal tics: blinking, eye-rolling, grimacing, throat-clearing, coughing, neck-stretching and head-jerking. We had seen some of these symptoms when she was younger, but never so severe. Now, the dots were all connected. After hoping and praying for an easy cure, a quick fix or a magic pill for our bright and beautiful 15-year-old girl, we embraced what several hundreds of thousands of families across the country confront every day with every breath:
This is what Tourette syndrome looks like.
When she's in an enclosed space, like an elevator or a quiet classroom, Veronica feels suffocated. Strong odors, loud noises or rude people can trigger an uncontrollable wave of ticking. Even if she's able to temporarily suppress the urge, some form of tic comes back with a vengeance later. There are other comorbidities: migraines and OCD. She is still fighting chronic fatigue that is interfering with normal life. There are many more tests and doctors' appointments to come.
Like other Tourette kids, Veronica wants people to know that it's not a cursing disease, as Hollywood and YouTube have mercilessly mocked the syndrome. It's not something you do on purpose. It's not like having an occasional muscle spasm in your eye or leg.
Many TS kids are fortunate enough to outgrow their symptoms. Many more do not. As soccer star Tim Howard, who was diagnosed with TS in elementary school, wrote in his autobiography last year, "TS looks different in everyone who has it -- I've heard it called a fingerprint condition, and that's exactly right. No two people have the same case."
There are good days, bad days and still a whole lot of uncertain days. But knowing that there are families with children suffering far worse, we are grateful for every day. Veronica has shown us how to face our fears instead of hiding from them -- and how to persist, not just subsist.
While most students dread going back to school, she wanted more than anything else to return to the classroom with her peers, even if it meant exposure of her tics to kids who can be cruel and ignorant. In her math period, she told me this week, she started gasping loudly. Dozens of pairs of eyes fixed on her. She excused herself, listened to some soothing music on her iPhone in a restroom for a few minutes and bravely walked back into class.
"Are you sure you still want to do this?" I asked.
"Yes," she said resolutely.
Brave young lady.
Correction. The date of the article is August 21, 2015
I have a close friend (an adult with a beautiful wife and three wonderful kids) who has this syndrome. I knew him for several years without realizing it.
Then one day there was a mix up in his medication refills.
What followed knocked him out of work for two weeks and put him (and that wonderful family) through an absolute hell as they tried to get him regulated again.
My heart goes out and my prayers go up for anyone affected by this disease. It’s something you really can’t appreciate until you’ve seen it up close. All too frequently it’s not just the simple “obscene blurting” that you see in the movies. Popular media has done a terrible disservice by oversimplifying what can be (and too often is) a very complex syndrome.
Those who don’t have a degree of Tourette’s aren’t F’ING normal.
May God help this wonderful person!
I’m humbled by the knowledge that I could not deal with this nearly as well as these fine people have.
LOL
May God’s healing hands lay upon her. It has to be a frustrating, exhausting experience.
Thank you for posting. My son was diagnosed with TS in 2014. His associative disorders are more difficult than the actual tics. It is a misunderstood neurological disorder and I appreciate any light that can be shone.
tourette’s can be eliminated with high doses of the right kind of magnesium (glycinate is the best form, Metagenics the best brand).
I do alot of research on mag and got my cousin’s son on it who had all the symptoms of tourette’s. It all went completely away when he started taking the mag
see my post below on magnesium
That is a good link.
They grow pot now in CO that’s bred specifically to address neorological maladies, the most obvious being muscle spasms and restless leg. They tried to breed out the THC, and were successful only when they back-bred it with industrial hemp.
I have very bad restless leg. Restless body would be more accurate. I am on pharma drugs for it, but those drugs are very bad for my muscle tone; it’s as if I am wasting away. The drug I take is also used for MS. When I raise concerns my doc’s response is “meh”.
I want to try this pot that has no THC. I am a grow up; I think I can handle the evil effects of this demon weed /s.
I use the weakest strain at the dispensary. It’s very high in CBD. What I’ve found is that my muscle spasms get much worse for about 4 hours after I take it, then die down to the normal level of hell.
Where it’s worth it is the next day. ALL of the spasms and nerve pain are gone. Totally GONE. But I’ve got to set aside about 3-4 hours out of the day to deal with the small dose. It’s not even enough to make me ‘high’ (no worse than two glasses of wine), but the pain isn’t funny.
When I behave myself, stick with the program and keep up with my daily dose, I’m pretty much pain-free.
I’m off ALL narcotics for the first time in 9 years. Two months with zero pain meds. (A small muscle relaxant does help me cope when I’m getting back on the cannabis.)
My daughter has suffered from daily migraines since she was 12. Only one medication worked for her, but she wasn’t allowed to take it daily as a preventative. She just got her MM card. She takes two bites of an edible before she goes to bed and is migraine free the next day. She’s had her first migraine free month since she was a child. (And yes. We’ve seen every specialist that we could over the years. The only thing that she didn’t try was electroshock therapy. That was the next step.)
What’s amazing to me is how little it takes to get a benefit and how long that benefit can last.
Prayers offered up for all the people mentioned in this article and comments.
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