Tag: adhd

acupuncture, Tics, Tourettes, Uncategorized

Are You Ticked Off by Negative Comments?

Andrea Frazer

woman-in-a-purple-coat-1937-matisse-420x528

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!

Uncategorized

Happy New Year! Tic Resolutions?

Andrea Frazer

skating

Keeping this short as I’m at work. (Unless you’re my boss reading, in which case I am diligently coming up with 75 Examiner Headlines.)

How was your holiday season? How are the tics? How are you dealing with them?

One dear friend of mine from my private group keeps a Victory journal. It’s a faith-based writing memoir in which she shares her struggles and hopes for her son with God. By writing down verses and scriptures, she has an automatic go-to way to release some of her fears. I love that!

As for me, I am a pray-er and list maker. Here are my goals for dealing with Tourettes this year. Would love to hear yours.

Fantasy Goal

Not let tics bug me in the least!

Realistic Goal

Find the courage to accept the tics I cannot change, change the tics I can, and have the wisdom to know the difference.

Vocal Tics Gone

Thanks to acupuncture, Stink’s vocal tics are gone. I mean GONE. Given how much crap he ate over Christmas, combined with video games and lack of sleep, I don’t believe this is just coincidence or part of the tic cycle. Acupuncture is the reason, so I’m grateful. (Stay tuned this week as I video tape the lovely Martina speaking on this subject!)

Still Shaky Shaky

Unfortunately, my son’s head shakes/nods are at an all time high. I mean, NON stop. (How they don’t bug him is amazing. I honestly get so drained being around it sometimes. I swear, it’s ME who needs some kind of hyno-therapy for this. Still, not depressed like I was years back. Just working on acceptance. There is hope!)

Martina thinks that the supplements will kick in after six weeks and to be patient until then. If the constant shakes don’t go away, it’s time to reconsider how much time he spends on the computer.

NOTE: I pray that he does find relief via the herbs she is prescribing, because he SOOOO loves his gaming. He is not playing all day. He plays weekends only. During vacation he plays 1 – 2 hours/day. This might seem like a lot, but as a kid, I watched TV 1 hour-2 hours/day. I also biked and ran and hung out with friends, just like Stink. We’ll have to see.

Realistic Plan for 2014 for Tic Treatment

* Gluten free unless a birthday party in which he gets pizza and cake. (Similar to me and wine. It’s all moderation.)

* Computers weekends only except 10 minutes/during week to feed some virtual plant in some game. (I know, it’s dumb)

* New sport introduced for daily exercise

* Dog for him to walk daily! (Stay tuned! He got a promise for a dog on New Year’s Day which was also his 11th birthday! Tics increase in the tween years, so I’m keeping this in mind.)

* Acupuncture 3 days/week + supplements

More Hardcore Plan if tics don’t decrease by Spring

* No 10 minute virtual plant feeding during week

* Going dairy free again

* Revisit the idea of Brain Balance now that I’m working and might be able to swing the 5K

* Consider some kind of Lens Treatment for tics

* Revisit an environmental doc to guide me on pros and cons of letting a kid be a kid (video games) and supplementing with good stuff I’m already doing

For Me

* Daily exercise

* No wine during the week

* Church on Sundays with family

* Bible Study daily (just ten minutes)

* Life Group (small groups of people thru church) to connect with once/week and remind me that my life is not based on tics but something so much greater than myself

I pray that 2014 brings you peace that transcends understanding. I pray that you (and I) remember that all kids have something. We can’t always fix the tics, but we can encourage the gifts our kids are born with. Personality trumps Tourette Syndrome. Love you all!

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

Tics, Tourettes

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

Andrea Frazer

hands-over-ears-150x150

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.

_________________________________________________________________________________

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, Tourettes

Acupuncture to the Rescue: Tics Reduced!

Andrea Frazer

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.

acu 2

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, Tourettes

Tics, Faith and Believe.com

Andrea Frazer

superhero_happiness_BL

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.

Uncategorized

One of These Kids Is Not Like The Other

Andrea Frazer

“One of these things is not like the other…” That used to be my kids’ favorite Sesame Street song. They’d squeal with joy when one row of boxes containing 3 apples and oranges rolled by, while another box contained 3 apples and a banana. So similar, yet so different!

Perhaps you, too, can play this game with my children.

Pip’s Suitcase

1

Stink’s Suitcase

2

Pip’s version of arcade game playing

3

Stink’s version

4

Pip’s version of hat wearing

5

Stink’s version

6

While I’m stoked to say that no one laughs at Stink for a few tics, our family finds him pretty hilarious. He really brightens our lives.

Pip finds him pretty darn funny also. She’ll even tie his shoes for him. 7

After all, shirtless arcade play is exhausting. Plus he’s got those 100 pens to organize in his suitcase.

The takeaway: If your kid is eccentric like mine, like Stink’s treasured Scooby Doo suitcase, you better roll with it. They only get more eccentric with time. (And thank God. It’s so much more fun.)

Uncategorized

Staying TRU to You!

Andrea Frazer

tru

Meet Tru, Kaiser Permanente Therapy dog. She makes sick people feel well, even if for a few moments only. Do you think she cares that she has a crooked shamrock on her head or that her spots don’t match? I think not! Tru says to the world that you can have joy in less than peaceful circumstances. She is Tru (pun intended) to herself.

This is a theme for me these days.  Our house, for the past six months, has been in a constant state of change/upheaval/mess.

First came the renter in October, so the office went buh bye.

So did our dining room which became the new office.

So did the TV room which became the new dining room.

The living room stayed the same! Woo hoo! Good news!

The bad news… we had to get rid of 600 square feet worth of junk, not to mention that the kids had to choose what they valued most from their junk pile of flammable crap treasures in the TV room and consolidate it into their shared bedroom. Which has not shelves.

Which meant hallway linen closets had to be rearranged. (Do we really need 923 towels from 1974? I think not.)

It also meant that the kids had to throw out some of their crap treasures when it all didn’t fit in the hallway closet.

There were, to say the least, lots of tears, fits, anxiety and tantrums. I eventually wiped my eyes the kids’ eyes though and helped them see this as a learning experience. Tourettes truly taught me this. Ask any of my friends, and they will tell you that when Stink was first diagnosed, I was a basket case. Every tic was cause for alarm bells. No doctor could see me fast enough. No amount of “It’ll be okay” shoulder rubbing would suffice. I wanted perfection (no tics) and I wanted it immediately.

Of course, this didn’t work. I had to come up with a better game plan. And while it wasn’t easy, I started viewing his diagnosis as a marathon, not a sprint. I started having joy in the process. I mean, if you’re going to embark on killing your family with gluten free bread, why not subscribe to Pandora and teach your kids the art of show tunes while you bake? If you’re going to sit in traffic for 2 hours on the way to UCLA, why not get Harry Potter on tape or count sky scrapers and explain what it means to be an architect or bring your mom along who can point out the area of UCLA she used to work in back in the days of the covered wagon? (Sorry, Mom. I had to.)

I say all this because, finally… dare I type this… my house is sliding into place again. And with that place – and space – I am finding peace. But it wasn’t instantaneous. It took patience and time and work and, yeah, a few tears. But no one could do it but me. I had to set the tone – for my kids, my husband, my friends (who pitched in) and for, most important of all, ME.

It seems that as women we are bombarded with what it means to run a tight home and have successful kids. But what is the point of perfectly waxed floors and an organizational system to rival Martha Stewart – along with a tic free child – if we are miserable in the process? Why not submit sometimes to the chaos and give yourself the grace that you, your child, your home – YOUR LIFE – is a work in progress? And then, rather than berating yourself for your less that stellar outcome or getting into credit card debt for perfection that doesn’t exist, you can make slow and steady progress, small and steady goals, and look back over your progress and think, “Damn, I’m really growing as a person! Nice job, me!”

Just a few thoughts I had this Monday afternoon.

What about you? Whatcha thinking? I want to know!

Tourettes

Finding the Right School

Andrea Frazer

kids

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.

Letter

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.

Uncategorized

Faith, Supplements and Hope: Welcome!

Andrea Frazer

After everything we went through this summer and last Spring with UCLA and their “wonderful” Intuniv program, Stink’s tics are worse than ever. His focus is up, but what is the trade off? The ability to sit still while clicking 50 times/minute plus, oh this is a fun one, at least three shudders/minute? Should we get on yet another medication to help ease this? Maybe some nice narcotic? And then, down the road, shall we go with an anti-depressant to ease some of the social stigma from all the stares and questions about his tics?

NONSENSE.

I am easing away from this stupid drug and all these ridiculous labels about what it means to have T.S.. I always say it, but far greater than a “classification” for symptoms is confidence, and God bless Stink, he has it in spades.

I am not going down the drug route anymore unless absolutely necessary.

And, as fate will have it, UCLA isn’t returning my call anyway. I have tried, for 2 months, to get a hold of Dr. McCracken, via email and phone. He had promised me, after we thought we found a silver bullet in helping Stink’s tics and focus, to tweak the meds if there was a problem. HELLO THERE IS A PROBLEM! But where is Dr. McCracken? Likely busy with yet another study that is funding his research or perhaps a child with more severe issues than Stink.

Which is fine with me. I wish him no ill will. He is very good at what he does.

But I’m good at what I do. It’s called calling B.S. when I see B.S..

I will moderate these tics with diet and some better supplements and, in three months, I will have good news to share with you!

Until then, please love your kids for who they are, not their tics. They are worth it. Life is short. Our kids are growing up fast. Time, like our kids, is ticking. Don’t let fear and a medical community who only knows “pills” tell you how to raise your kid. If the drugs work for you, yeah! But if they don’t, do not give up hope. There is always another way. And that way, my friends, is perseverance and faith and some mama kick butt humor and strength. We’re all in this together.

Next post: Supplements! We started today. I’ll keep you posted.

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Dr. Sims and Dr. Stack – Dentists Who Have Cured TS?

Andrea Frazer

Someone in my private T.S. group asked what I thought about Dr. Sims – a dentist on the East Coast who claims to cure T.S. through a mouth piece similar to a retainer.

I likely know as much about Dr. Sims as she does as I have received most of my info through his Youtube videos and publishings.

While many are skeptic, claiming that T.S. is neurological in basis only, I’m always open to new ideas. In fact, I called a similar doctor a few years back named Dr. Stack. As fate would have it, I did some research for this post today only to find that Dr. Stack trained Dr. Simms. Here is a pretty informative article about the mouthpiece and how it works.

* Note: When I called Dr. Stack’s office to speak with him, the secretary said he takes phone calls about the device by phone appointment only – an appointment that would cost me $200. (Given that I am Ebaying one $10 shirt at a time to save for my own miracle cure Brain Balance, I declined setting that appointment time. But I did give him the benefit of the doubt. His work is getting decent reviews. He’s a busy dude!)

Another blogger wrote about the appliance and tics in more layman’s terms. I’ve taken the liberty of cutting and pasting that article below.

The easiest way to understand how Sims and Stack explain Tourette’s syndrome is to consider the experience of accidentally and unexpectedly hitting a thumb with a hammer, touching a stove, or stumping a toe. Many people will utter a loud “Ouch!” or “Darn” or some other expletive we cannot use on a family oriented website in response to pain.

dr_Stack_and_patient%281%29.jpgSuppose the nerve fibers that conduct pain to the brain somehow got crossed with the nerve fibers involved in seeing a woman with large breasts, or being pulled over to the side of the road by a traffic policeman, or seeing a large yellow object. The brain might generate an impulse to say “Piggie! Piggie! Big tits!” or “F—-ing Pig! F—ing Pig!” or “Tweetie Bird! Tweetie Bird!” the same way it generates an impulse to say “S—!” when someone touches a hot stove. (Andrea’s Note of Interjection: Moms, relax. Your kid is not going to curse in circle time. I promise. Moving on.)

People who have Tourette’s syndrome tend to have “crossed wires” while they are focusing on difficult or interesting tasks. They often consciously try to suppress inappropriate speech and movements, until they just can’t. Sims and Stack tell us how this can happen.

The nerves leading from the muscles to the brain sometimes amplify pain signals to make sure the brain gets the message. “Fast” pain fibers in a large nerve enter the base of the brain from the face. Nerves that transmit information about temperature enter the brain at the same place, and the outgoing cranial nerves VII, IX, and X leave the brain in this region.

These cranial nerves control the front of the face, the sides of the face, and the lower digestive tract. Sims and Stack believe that if these nerves are compressed together, they may engage in cross talk, similar to a short circuit, transferring nerve impulses from one to another, partially bypassing the higher control centers of the brain. The stronger the nerve impulse, the harder it is for the higher levels of the brain—which are the usual targets of drug treatments—to intervene and stop the tic.

Dr. Sims and Dr. Stack treat Tourette’s syndrome by relieving the physical pressure on the nerves entering the base of the brain so there is less cross talk. They have developed a plastic dental appliance they call a neurocranial vertical distractor, which “distracts” the fibers entering the base of the brain from the cross talk of neighboring nerves. Fitting over the lower teeth, it holds the lower jaw in place so there is less pressure on the base of the brain. Wearing this appliance 24 hours a day reduces symptoms of Tourette’s disease in adults, as you can see on You Tube. When the proper spacing of the jaws is determined, these dentists report, all tics cease immediately:

Even more promising, however, is the possibility of using this dental appliance in treating younger children who are just beginning to have symptoms of Tourette’s. The first symptom of Tourette’s usually appears at the age of five, about the same time the skull grows tight over the area where the nerves involved in tics enter and exit the brain. The first tics usually involve the eyes.
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Let me go on to say that, similar to the controversy over Brain Balance – a $6000 program that promises to alleviate tics and other symptoms based on re-wiring the brain through diet and specifically targeted exercises –  there is a lot to be skeptical about when it comes to Dr. Sims and Dr. Stack.
“There’s not enough substantiated evidence that this works!” people say. “So what if some people say it works. These guys could be quacks!”
My response to these doubts is the same I give about Brain Balance, “Western Medical doctors are quick to hand out pills to kids to dull their brains and their tics, and those sometimes don’t work. In fact, no doctor even knows why a kid develops T.S., so why is their pill more valid than an alternative treatment? Oh, because they are buying their beach front property thanks to pay-outs by big time pharmaceuticals? Because folk are more comfortable with traditional methods? That might be, but I don’t think Steve Jobs sat around in high school thinking, “You know, my passion for transmitting electronic information over invisible wires is not something the telephone company understands. I better just give up and sell phone books.”
How can we not investigate everything for our children? No one is forcing a gun to my head to buy. Most days I don’t feel desperate for a cure. I’m looking for something that will give my son the best quality of life ever. If something works – say Brain Balance or this dental device – does it matter if I 100% know why?” (Like… why is this formatting so wonky? Don’t know, don’t care. As long as I get the info out.)
So that’s my question to you all: Would you take a chance on something if you weren’t 100% sure why it worked but it worked? And it was non-invasive?
My husband wouldn’t. We are night and day on this issue. While I admit I want “a cure” as much for me as my son (who really could care less) it seems nuts to my darling mate. I think often about my experience with my chiropractic kinisilogist: Rex had no idea how Dr. Carroll could place some vials on my kid’s chest and tell me what he was allergic to. But by golly, one traumatic and expensive blood test trip to the doctor confirmed the exact same results. No wheat, eggs or gluten, along with a myriad of other less offensive food and environmental stimuli.
Another thing? I can meet someone in two seconds and figure out their basic personality- if they are sad, or if they are hyper. I have had to back waaaaay off of relationships with people thanks to their vortex of dramatic energy. (This is why I blog. All you readers would destroy me in person with your crazy mama energy wanting to fix your baby. And yes, takes one to know one.) Do I have a degree from Psychic U? No. But I do have the gift of emotional intelligence.
Granted, paying someone 6k is a lot and I wouldn’t do it based on emotional intelligence alone. But a combo of “this feels right” combined with enough testimonials from others and a solid trust in the doctor would definitely sway me.
Why does my kid have T.S.? What caused it? Why does this dental appliance, or Brain Balance, seem like a reasonable thing to me? Don’t know. But it does. Until science catches up with the root of T.S., I’m going to have to dig into my mama roots and treat my son the best way I can.
I’d love to hear your thoughts.
I’ll leave you with this video from Dr. Stack
More parenting blogs from lots of folk can be found at the New Jersey Center for TS where this blog is syndicated. Want to share a story you have with them? Ask me and I’ll introduce you to the fabulous editor! Love New Jersey!
Here’s one from Dr. Sims