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Category Archives: Tourettes

Acupuncture Video #3 – Western vs. Chinese Medicine

In my third video of a series of acupuncture pieces, Martina Eberhard discusses the difference between Chinese and Western Medicine. Hint: It’s not that one doctor’s office has Fortune Cookies. Though if one did, I would make sure yours read: “Focus on you child’s gifts today!”

Happy end of weekend.

Andrea

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Are You Ticked Off by Negative Comments?

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My last post about my tic resolutions (what I can change, what I can’t, and having wisdom to know the difference) generated quite a bit of buzz over at The New Jersey Center for Tourette Syndrome where my blog is syndicated. While many people 100% got my point of view, I got a couple pretty negative comments. I had a few reactions:

1. Wow, cool! I’m finally pissing people off! People are reading!

2. Ouch, ick. That stung. Poor me. Let me go cry to my friends on my “Twitch and Bitch” forum.

3. Logical schmodgical: What if I really am offensive?

#3 stuck to me for a variety of reasons. Let’s start a new list, shall we?

1. I’m not writing this blog just for me. I’m writing it for others. It’s my duty, as an “educator” to be sure I am communicating effectively.

2. There’s a fine line between being a narcissist and writing compelling, memoir-driven articles.

3. Most interesting realization of all: Insecure people, even among friends and family, will often skewer people they know as being narcissistic because of their preconceived views of who that person is and should be within the framework of their very own insecure lives. People have a much easier time extolling the virtues of “other” writers – you know, the ones with the pretty book jackets who end up on “The View” or “Huffington Post” – who already have stamps of approval by the public at large.

4. Referring to #3, once my book goes, said haters and cynics will suddenly tout me as being right all along. Yeah me!

5. As a Christian, I would be nothing more than a hypocrite to push any of this in their face, or respond to negativity with like. I must love them as Christ loves me, and if I can’t, enter Christ. For those in the #3 camp, this #5 statement makes me not only a narcissist but a self-righteous one at that.

6. This leaves me with #6: “If God is for me, who could be against me?’ Romans 8:31

I don’t just tout #6 as a fun inspirational flag-waving-attempting-to-accept-tics-and-not-ruffle-feathers-mama. I feel it. I care about people, but if people don’t like me, I don’t really care. It’s lovely living in this place! Come join me if you haven’t bought property yet. The neighbors are friendly, there’s lots of laughter and the wine is fabulous! (Being good on the wine, relax.)

I did write to Jeff Weber, New Jersey’s fearless web master, to be sure I wasn’t being offensive. He gave me the pass, so off I go to do what I do!

Acupuncture Update: In closing, Stink’s vocals are still gone. He was complaining of loose stools from the supplements he was on, so we backed it in half. Unfortunately, his head shakes came back full force. That’s the bad news.

The good news is that Martina, his acupuncturist, believes he just needs to adjust to it slowly and the tics will go back down.

Martina Does Acupuncture Phone Consultations: Want a consultation on how to find an acupuncturist for your child in your area? Martina is available for phone consultations. She won’t recommend specific businesses, but she’ll get a sense of your child’s symptoms and then tell you what to look for in the right person, giving you specific acupuncture terms to use in narrowing down the right professional for your child’s needs.

Martina’s Consultant Fees: She charges $40/half hour, $60/hour. She’s versed in nutrition and supplements and can lead you in the right direction. Look soon for a new video of her treating Stink!

Martina’s In-Person Fees: Martina is in the L.A. area. Consult her directly for prices. Rates go down if you buy a packaged deal which, honestly, is recommended as she will want to start treatment 3 days/week and reduce as symptoms wane.

Martina’s Contact Info: You can find info on her at the link above. For quick reference, call her at 818-378-4157.  You can also look up her website or email her at Martina@YPIH@Gmail.com

Tell her Andrea from Happily Ticked Off referred you. I get absolutely no referal fee for this, but it does help her adjust her prices to you. (Pssst. I’m takign care of you!)

Check out more posts about Tourettes at the New Jersey Center for Tourette Syndrome where this blog is syndicated.

* Picture is “Woman in a Purple Coat” by Matisse. It always inspires me to live a life of purpose, joy and love. She just looks so relaxed, yet confident. I’ll take some of that, and a back scratch. Thanks!

Sounding Off About Vocals – A Real Term for This Irritation!

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Those of you with tics who have written to me often say that your noises bug you.

Those of you without T.S. but who live with it say the sounds can drive you batty.

I have nothing but sympathy for people with T.S. when their symptoms drive them nuts. Honestly, if my friend’s kid is ticking, doesn’t bug me in the slightest! But when it’s my kid, I really struggle.

Perhaps this is like people who have sympathy for the anxiety/neurotic/blabbermouth type. You might find me those other emotionally-inclined people funny, but if you lived with them, you might want to kick them to the closest pharmacy and insist they down a bottle of Xanax with a Zoloft chaser.

For those of you who have issues with vocals – despite feeling guilty for having such issues – I am pleased to announce you might actually have a mental disorder!

This just in from someone in my Twitch and Bitch private group: I had to share with my loyal mamas here!

You’re welcome.

Misophonia:

Misophonia, literally “hatred of sound”, is a neurological disorder in which negative experiences (anger, flight, hatred, and disgust) are triggered by specific sounds.  The sounds can be loud or soft. The term was coined by American neuroscientists Pawel Jastreboff and Margaret Jastreboff and is often used interchangeably with the term selective sound sensitivity.  Misophonia has not been classified as a discrete disorder in DSM-5 or ICD-10, but in 2013 three psychiatrists at the Academic Medical Center in Amsterdam formulated diagnostic criteria for it based on the largest cohort of misophonia patients so far, and suggested that it be classified as a separate psychiatric disorder.

The disorder comprises a unique set of symptoms, most likely attributable to neurological causes unrelated to hearing-system dysfunction. It can be described as an immediate and extremely negative emotional response accompanied by an automatic physiological flight response to identifiable auditory, visual, and olfactory stimuli. The disorder disrupts daily living and can have a significant impact on social interactions. A 2013 review of the most current neurological studies and fMRI studies of the brain as it relates to the disorder postulates that abnormal or dysfunctional assessment of neural signals occurs in the anterior cingulate cortex and insular cortex. These cortices are also implicated in Tourette Syndrome, and are the hub for processing anger, pain, and sensory information. Other researchers concur that the dysfunction is in central nervous system structures.  It has been speculated that the anatomical location may be more central than that involved in hyperacusis.

Symptoms:

People who have misophonia are most commonly angered, and even enraged, by common ambient sounds, such as other people clipping their nails, brushing teeth, eating crushed ice, eating, slurping, drinking, breathing, sniffing, talking, sneezing, yawning, walking, chewing gum, laughing, snoring, typing on a keyboard, whistling or coughing; saying certain consonants; or repetitive sounds.  Some are also affected by visual stimuli, such as repetitive foot or body movements, fidgeting, or movement they observe out of the corners of their eyes; this has been termed misokinesia, meaning hatred of movement. Intense anxiety and avoidant behavior may develop, which can lead to decreased socialization. Some people feel the compulsion to mimic what they hear or see. Mimicry is an automatic, non-conscious, and social phenomenon. It has a palliative aspect, making the sufferer feel better. The act of mimicry can elicit compassion and empathy, which ameliorates and lessens hostility, competition, and opposition. There is also a biological basis for how mimicry reduces the suffering from a trigger.

Prevalence and co-morbidity:

The prevalence of misophonia is unknown, but groups of people identifying with the condition suggest it is more common than previously recognized. Among patients with tinnitus, which is prevalent in 4–5% of the general population, some surveys report prevalence as high as 60%,[11] while prevalence in a 2010 study was measured at 10%.

The Dutch study published in 2013 of a sample of 42 patients with misophonia found a low incidence of psychiatric disorders, with the exception of Obsessive-Compulsive Personality Disorder (52.4%).  It has been suggested that there is a connection between misophonia and synesthesia, a neurological condition in which stimulation of one sensory or cognitive pathway leads to automatic, involuntary experiences in a second sensory or cognitive pathway.  The basic problem may be a pathological distortion of connections between various limbic structures and the auditory cortex, causing sound-emotion synesthesia. There are people with both misophonia and synesthesia, and many people with synesthesia have more than one form of synesthesia (there are over 60 reported types).  Misophonia may very well be another type of synesthesia.

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They are now doing studies to see if there is a relationship between ADD and Selective Sound Sensitivity Syndrome (4S).  Individuals with ADD are typically not bothered by loudness of noise – rather, the softer, repetitive, common sounds are the ones that irritate, distract, anger and sometimes send them into fight or flight mode.

Photo taken from here!
Check out more posts about Tourettes at the New Jersey Center for Tourette Syndrome where this blog is syndicated.

Acupuncture to the Rescue: Tics Reduced!

Good news! This post is not as long as Sunday’s “War And Peace” expo Stink is seeing relief already from one treatment of acupuncture yesterday. I am so relieved. He came home calmer, with a 75% reduction in vocals. He still sported major eye rolling and head shakes/head butts, but his acupuncturist says it’ll take a week or so to really get suckers subdued.

I’m lucky as my son’s healer (and the source of my new found hope) is the incredibly talented Martina Eberhard who just happens to live across the street from me. She practices out of a darling 3 bedroom, wood floored, 1950’s cottage home. Her treatment room smells like heaven. It’s about about as clean and professional as any first-rate office park salon. In fact, it’s easier to relax in as the whole house is flooded with a personal warmth. Parking structure and cement? No thanks. I’ll take curbside service and a brick patio.

A few years back, she had come up with a treatment plan and supplements that she was convinced would really give Stink 90% relief. (Video and post here.)We ended up not seeing her plan to fruition because, despite only 20% of her treatment being executed, we saw such drastic improvement. Stink was tired of doing it, also, so we took a break.

Um, the above statement? It’s kind of akin to a bipolar person going off their meds because they “feel so much better!” Suddenly there are freak outs, manic screaming, and all around “What just happened?” despair. Pretty stupid, but let’s not berate ourselves with the past, shall we? Moving on.

As fate would have it, just when I started to lose my brain with tics, Martina mentioned that she saw this article on a teen Miss America who had severe T.S. and was “cured” through acupuncture. The formulas and treatment used on her were the same as Martina recommended for Stink two years ago, inspiring her even more to work on Stink again!

So, with my heart in my hands, tears in my eyes, I said “Yes.”

Full Disclosure: Martina’s rates are more than reasonable for her high level of skills. Check out the above video – she is sticking needles into my kids head and shins! She knows what she’s doing. That said, because of my professional writing background, we are trading service for service. I only mention this because if trades were not an option, I’d pay anyway. She’s that much of a healer. Eberhard did not pay for this review.

Big Take Away: Where there’s a will there’s a way, and sometimes we must get creative to make things happen. We all have gifts – why not use them to benefit one another?

Stink will begin acupuncture three days a week, then taper to two, then one.

Last night we had an impromptu bbq in the back yard. My sweet hubby cooked for us all, including Miss L and Martina. Connection and friendship out trump tics every time.

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I’ll keep you posted! Meanwhile, is something working for you?

Check out more posts about Tourettes at the New Jersey Center for Tourette Syndrome where this blog is syndicated.

Tics, Faith and Believe.com

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Are you thankful for tics this Thanksgiving season? You’re not? When my son was first diagnosed, I wasn’t either. But today, from a place of experience and growth, I am happy for the character building that has come from this crazy ride.

“How is that possible?” You might ask, before reaching through the computer and throttling me with frayed nerves shot from hearing thirty minutes of throat clears on the way to morning drop off. “I’m terrified my kid is going to be made fun of. Or worse, that this condition will be harder for him than it is for me!”

I get it. I really do. And all I can offer is my own experience, which is this: Six years later, my son is totally fine. Yes, he still tics (last night his vocals were driving me a bit nutty… low gulps and clucks) but he completely embraces with who he is – not a kid with Tourettes, but a kid who creates video games, loves his sister, rocks math class, has a gaggle of geeky computer boys at our house every Friday night and, oh yeah, he tics. It’s a microcosm of who he is in the grand picture.

Yes, people ask him about his tics sometimes. And he always gives them the same answer: “Jesus made me this way.”

I never saw myself as a religious person, but from the vantage point of time, I realize just how much my faith has meant to me and how much it’s shaped my son’s worldview of himself.

I really came to believe that our God is the same yesterday, today and in the future. “Jesus Christ is the same yesterday and today and forever.” Hebrews 13:8.

If this is true, then God does not make mistakes. Which means my son’s T.S. was not an error in the production line of human creation. “For You formed my inward parts; You wove me in my mother’s womb. I will give thanks to You, for I am fearfully and wonderfully made; Wonderful are Your works, And my soul knows it very well.…” Psalm 139:13

Oh, yes, does Stink know it.

Which leads me once again back to me. How do I know God’s plan for my life? And how does this relate to Tourette Syndrome?

I know not because someone thumped me on the head with a Bible or dragged me to church. I know not because someone drowned me in holy water and made me accept the Lord to live.

I know from hitting rock bottom in my marriage and my parenting.  It was only when I took a chance that maybe, just maybe, there was something outside of my own spinning brain that was guiding my steps, that I started to heal.

It took a while, but God was patient. Turns out I didn’t have to understand it all at once. I only had to have a little bit of faith.

“If you have faith the size of a mustard seed, you will say to this mountain, ‘Move from here to there,’ and it will move; and nothing will be impossible to you.” Matthew 17:20

Ironically, that passage comes from a section in the Bible where Jesus heals a boy with a demon. I have often wondered if perhaps this child did not have “evil spirits” in him but just a bad case of tics that people didn’t understand. I wish I could have been there to hug that boy’s mother and father and let them know that, “Hey, you are not alone. I get it.” (But hey, they got the Big Guy himself. They didn’t need me!)

But it’s you likely do. I definitely do. We all need each other to support and encourage us along this journey. “For where two or three have gathered together in My name, I am there in their midst.” Matthew 18:20

As I begin my new job as the female voice for Believe.com, I am looking forward to sharing my faith as it relates to marriage, parenting and Tourettes. I hope you’ll visit me over there so we can all grow together. (Link to my column when it’s live in a few weeks. Meanwhile, I’m open to a lot of suggestions. I’m looking to make the content more personal, edgy and conversational, like my BabyCenter and Good Housekeeping days, except instead of talking sex and diapers we’ll be talking tics, marriage and Jesus. And who am I kidding – you know I’ll slip in some sex talk anyway. I have just discovered this Christian blogger, and wow, is she good.)

Note: Believe.com is a Christian website, but for those of you who are not Christian, you are welcome also! I’d love to learn more about your background. And of course, I’ll always write here at Happily Ticked Off – because you readers are my first love.

Until next time, hug that ticker of yours today.

Check out more posts about Tourettes at the New Jersey Center for Tourette Syndrome where this blog is syndicated.

Finding the Right School

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When Stink was first diagnosed with Tourettes, I was still holding onto hope that he would attend the Catholic school of my youth. He would play sports and go through the Sacraments and be just crafty enough to be adorable in his skinned knee navy shorts but obedient enough to get straight A’s on his report card be head altar server. It was an awesome dream and so much fun to fantasize about!

Then all the kids from his preschool got their acceptance letters into kindergarten. Stink did not.

Given I had no indication whatsoever from his preschool teachers that he would not do well at the private gradeschool (he always had glowing reports on his character, behavior and cognitive/motor abilities), I made an appointment with the grade school principal.

She was five years younger than me, but acted like a stern sixty year old. As I sat there, looking at her somber face in front of an oil painting of the Good Lord, she informed me that Stink seemed very immature at the intake interview.

“He’s FIVE!” I responded, flabergasted.

“Yes, but he didn’t exactly hold his pencil correctly, and with thirty kids in the classroom and one teacher, we don’t have a lot of room for extra attention.”

“Why in the world, then, with that many children, would I want to spend 10k/year on your school?” I asked, incredulous.

“For the Christian environment,” was her clipped response.

“Oh, yeah, I’m really feeling the love here!” was my retort.

So off I went, enrolling him instead in a local charter school. We’re all different religions and sexualities and neuro make-ups and all kids are honored and get this: It’s free and the teacher student ratio is 22 to 1. Jesus would be proud!

My advice to you, today, is to be sure that the school your son or daughter is in does not reflect what you, as their parent, want. Your child is not supposed to live your dreams. They are supposed to live theirs. And that means being supported in a place that best fits their personality, disposition and academic requirements.

I love my charter school! I have the best communities of moms and dads I could ever ask for. (Literally, there are 15 parents at any given time I can call and say “Please pick up my child… I’m running late!” and boom – DONE. Community is everything. And not just any community. A community you are comfortable in.

Here’s a response from a reader here, Leanne, who spoke in my last post about the importance of talking to your child’s school about any issues they might have in order to best ensure their educational success.

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Yes, my son is on Intuniv for tics.  2 mg in the morning, and then the generic form (guanfacine) 0.5 mg afternoon (because you can’t cut the Intuniv pills in half but can the guanfacine).  My son seems better than he was December 2011 when we got the diagnosis……I believe because of the Intuniv.  We didn’t put him on it until June 2012 and only did then because he was SHOUTING HIS WORDS and I can’t even tell you what that was like.  Horrible. 

He waxes and wanes.  I was scared to death of him starting middle school.  I truly was (yes public school).  So I went into middle school before it ended for the year last spring and met with the principal and counselor and let them know I had an incoming son with Tourette’s who would be there in fall.  I had printed off information from the TSA website on what it is, and I also printed off an “introduction paper” on my son and paper clipped a picture of him as well so they would recognize him when he came in. 

I had a friend go with me.  I had stuff about him that I thought would be important, like that he loves math, doesn’t like reading much, loves sports and does a lot of them, and of course explained the tics.  I also had the name of his neurologist and prescriber and phone numbers on there.  That way if they had any questions, they could ask them as well.  I actually cried when meeting with them but they put me right at ease and told me they were there for him and wanted him to have the best education opportunities possible.  I then went back with him two days BEFORE middle school started to meet again with the counselor and take another tour of the school and met with all of his teachers and explained about his tics.  Anything you can do to put his mind at ease, your mind at ease.  The counselor told me that if his tics got loud they could make accommodations such as letting him go to counselor office or bathroom to “let them out” if needed.  There are several things schools can and have to do to help, like a 504 plan I think.  There is a lot about school on http://tsa-usa.org/    

He does have loud vocals waxing and waning.  Some teachers have allowed him to chew gum in class discretely (so other kids won’t want some) and that helps his vocals, so do gummy candies but I try not to do much sugar.  He “disguises” it as well with his words in sentences going up and down in volume.  I was petrified of middle school for him.  But I did all I could BEFORE he got there which I think is huge.  Your mind can take you down some dark, scary roads that don’t even turn out to be true.  I think if you met with middle school staff your mind would be put at ease.  This got so long…….there is just so much I could say because I have been there, I do understand, and will continue praying for you.  I will answer any questions any time.

* Photo taken 3 years ago. These kids are still best friends. So much of that has to do with the school. It’s a school that advocates for diversity and togetherness with no bullying policy. I AM SO GRATEFUL!

Check out more posts about Tourettes at the New Jersey Center for Tourette Syndrome where this blog is syndicated.

Writing the Book: Roadblock

Based on last post, you can see that there’s been a lot going on. Madness is not exactly conducive to sitting down and writing a book. And yet, I can type away here at Happily Ticked Off.

And writers write.

So what’s my problem?

Part of it is that writing about something in a structure format is different from spewing out my crazy ramblings offering up a quick blog post.

A bigger issue for me, though, is the increase in my kid’s tics.

It’s not that I’m so sad that I can’t form a sentence. It’s that I don’t know what sentence to write to finish the book.

Truth be told, I had really hoped this Ticnoir would have a dramatic story but a shiny happy ending: “Here’s where my life fell apart post-diagnosis… here’s where my marriage hit the skids… here is where my two big writing gigs went away… but here’s where Rex and I fall back in love and I’m content with motherhood and my $42.51/month on Ebay and all Stink’s tics are gone! Woo hoo!”

After a few years dealing with T.S., I had no real illusions that there would be a magic bullet for tics. But after all the diet and all the supplements. After all the good sleeping and trying out meds… I certainly didn’t think the tics would be worse.

And yet, they are.

And for the end of a book, that totally blows.

It’s like going to a movie about a woman who loses her high paying job and then has a hard time making her mortgage. She has a hard time feeding her kids and her husband gets sick with MS.

But then, a la It’s A Wonderful Life, the community pitches in. In the last scene of the movie she gets a ton of cash from her church and some fat kid gives her the last nickel in his piggy back. This woman not only saves her house, but has enough funding left over to re-do her kitchen. Her husband was misdiagnosed and her kids have more organic food than they know what to with! There are cheers and shouts and tears of joy! But then, in the last scene, some thug socks her over the head on the subway and steals her huge wad of cash. Her husband gets squashed by a Gremlin and she and her kids go homeless, eating 99 Cent store Mac N Cheese forever. The End.

Who wants that kind of ending? And really, if you’re going to get hit by car, wouldn’t you rather get hit by a Porsche?

I suppose, in a way, this is my apology to you: Sorry, suckers. I couldn’t fix your kid’s T.S.. You can stop reading now.

But again, and I mean this (waaaay deep down): Enter whisper: “If you can’t fix the tics… fix yourself.”

I’m trying.

I really am.

And for what it’s worth, I’m supporting you along your way.

The Bottom Line

Does everything we do to help our kids through diet and healthy choices and meds (if needed) help? Yes. I do believe it does. I believe it could be far worse without it.

The Truth

Ten years old is hard for any kid – especially kids with tics. But this is a season.

Even Better

I’m not in the emotional toilet. As I tell my blog friend, Margaret, “I am not in the bell jar.” Ring ring ring the bell! Maybe that’s the happy ending. That I’m learning to roll with life and never give up. I’m learning to… enter my other theme, “Accept the tics I cannot change, change the tics I can, and have the wisdom to know the difference.”

Hang tight, all!

* Photo of me and Topanga T when I was 4 sent by my cousin, D D. Little did I know, at that innocent age, what a ride life would be. But maybe I had the right idea back then. When times get tough, get dancing.