An update on supplements and behavior

Last week, I wrote about how everyone should try supplements to help with their kids if they have Tourette Syndrome, OCD or another associated neurological disorders. Here’s a brief update of how things are going on our end in that regard:

  • Stink’s tics have improved 90 percent from 7 a.m. to 4 p.m. By 5 p.m., when he’s tired, we’re at a 60 percent improvement. Almost no verbal clicks or sentence interruption. Minor shudders only.
  • On the behavior front, other than having the teacher write to me saying that he and his best girlfriend, Miss Z, had to be “talked to” for playing tag by patting each other on the butt, he is doing awesome.
  • But because I have written this down, I will be cursed and he will start baying like a horse and be suspended for setting the lunchroom on fire tomorrow.

Deep-brain stimulation helping with Tourette Syndrome, OCD

EDITOR’S NOTE: The following research article was pulled from the website of the Gainesville Sun, was written by Kristine Cane and was published on October 17.

A decade ago, deep-brain stimulation for Parkinson’s disease was considered a risky procedure. Today, it’s on the cutting edge of personalized medicine, and researchers at the University of Florida’s McKnight Brain Institute are at the forefront of its evolution.

“When we started in 2002, there were only a handful of places in the U.S. that did it. There was a lot of skepticism about the operation from internists and neurologists,” said Dr. Michael Okun, a neurologist at UF. “Now it has gone from crazy to cool to completely accepted.”

Okun published an article in the New England Journal of Medicine that explains how the procedure is helping with Parkinson’s disease and other neurological conditions such as obsessive compulsive disorder, Tourette Syndrome and depression.

Okun and Dr. Kelly Foote, a neurosurgeon at UF, have performed more than 800 procedures in the past decade, mostly in Parkinson’s patients whose medications have become less effective, leading to complications such as “on-off” fluctuations.

During the off periods, the medication stops working and patients’ symptoms — such as tremors or immobility — worsen. This happens in most patients after about five years, said Okun, and patients with off periods of more than three hours a day are good candidates for deep-brain stimulation. Continue reading

You’re not alone: My son and I have walked in your shoes

My son, Garrett, used to have full-blown tics — both vocal and physical tics. He was an avid hunter and premier soccer player prior to his Tourette Syndrome exploding. Garrett wanted to stop the tics by taking an overdose, and as a result, he missed 42 days of school one year. But now, he has been drug-free for four years.

Garrett is the proud owner of YOJ sports, soon to be named Andover Hunt and Fish. He has been interviewed by two newspapers about his TS, including the New Jersey Herald. Garrett also is taking two classes at the County College of Morris. I’m not sure if I found the right “cocktail,” but his TS is now gone.

No one can believe that Garrett is the same boy who suffered with severe Tourette from 6th grade through the beginning of 9th. I cried many times during our period of Tourette and am so very thankful our son has no more tics.

Yet I feel guitly for the families whose children have Tourette. Life wasn’t fair many times for ys during those school years, and it’s not fair for you now. I just want all who are struggling with this themselves to know that I, and my family, have walked in your shoes.

10 ways to get your kid to work around the house

If you read my post on Friday about child behavior being in the eye of the beholder, you’d know that I promised to give you 10 ways to get your kid to work around the house. Well, I’m a woman of my word, so without further ado, here you go:

  1. Have a family meeting. Let them know you love them to pieces, and because you love them, you’re going to help them be more part of the family.
  2. Have them come up with ideas of things they can work on. Some ideas you’ll keep: Taking out the trash or clearing the dishes! Others you will ixnay, like: We get to go to Chuck E. Cheese every time we remember to flush! It’s not the ideas you follow up on with the kids that count. It’s listening to them that makes all the difference. (But in the end, it’s a dictatorship. Mom rules. So sorry!)
  3. Don’t install more than 3 new things at a time. I heard once that kids can’t take more than 3 changes at a time. I’ve found that to be true. Work on those for 21 days until they become a habit, then move on to the next three. Want to write a list of 100 things that need work? Great. But don’t implement more than 3 at a time or you are headed for frustration. Continue reading

Child behavior is in the eye of the beholder

As you all know, I’m hardly an expert on behavior. But I can speak for the facts, and those are that my kids really like each other. It’s not because my daughter sucks it up to hang out with my wacky boy, or vice versa. It’s because they truly respect each other as people.

I’ll take a little credit for that (since I can’t take credit for curing Tourette Syndrome) and go so far as to say that you have to show kids how to treat each other. This often means playing bad cop and not worrying that their self-esteem is going in the toilet because, God forbid, you make them clean the toilet.

I don’t know about you, but I think our culture does such a disservice to our kids. We try to do everything for them. We feel guilty if we can’t. Or we try and over compensate by spending our life savings and credit cards on extra curricular classes and “feel good” artificial experiences when really… really… what they need is to know that they are okay just because they are.

When I began to embrace this idea, I felt less worried about the TS.

While selfishly I hate the noises it brings, I welcome the invitation it offers me. Every tic seems to chirp, “Andrea, this is one more opportunity to live life on life’s terms. Since you can’t fix the kid, give up the idea that he is supposed to have a perfect life. Let him, not you, earn that confidence.”

Come back on Monday for my 10 ways to get your kid to work around the house. You won’t want to miss them!

October is National Bullying Prevention Month!

Today on the website of the New Jersey Center for Tourette Syndrome, there is a National Bullying Prevention Month story featuring Dr. Stuart Green, who is the director of the New Jersey Coalition for Bullying Awareness and Prevention and an Honorary Committee member of the 3rd annual Youth Advocate 5K.

Dr. Green devotes a lot of his time toward anti-bullying efforts, and his advocacy played a big role in New Jersey developing the toughest anti-bullying laws in the country. After you read the National Bullying Prevention Month article, come back here to read more of Dr. Green’s thoughts about bullying, why it happens, where it happens and how it happens.

Childhood bullying primarily occurs in schools. Bullying is almost always a pattern of negative acts, not a single incident. If not prevented, and then not adequately addressed, it typically extends over the course of months or even years.

The primary cause of bullying is the culture and climate of the school in which it occurs. Although most bullying occurs between peers, the primarily responsibility for preventing and addressing bullying belongs to school leaders and staff. Continue reading

Support the 5K walk in Mendham for Tourette Syndrome

Please support the 5K walk in Mendham for Tourette Syndrome on Saturday, November 3. The more money donated, the more we can support our family members and friends with the right tools and understanding of TS. We walk to make a difference. We walk because we care. Please join us in Mendham on November 3! My daughter and others are so grateful for what the New Jersey Center for Tourette Syndrome does for kids with neurological disorders!

Everyone should try supplements

Above is what I give to Stink every morning. I am adding in some other nutrients I ordered by mail toward the end of the week. He’s still taking his 2mg/Intuniv for focus.

So far, no changes. Lots of low verbals that interrupt his speech about every 20 words. My friends swear their kids don’t notice. I have the best pals in the world.

It will take about 1 week to see if the supplements make a difference. But the difference my support system has made on me this week? 100 percent improvement. (Get yourselves some supplemental good people in your life, pronto!)

Advocating for your kid

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 Tourette Syndrome. 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 e-mail 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.

ROAD TRIP! We’ve got a busload going to the TS walk — join us!

Here is my team at last year's New Jersey Walks For TS event. We will have even more at this year's 5K, which takes place on Saturday, November 3!

Last year, when we decided to do the New Jersey Walks For TS event as an extended family on behalf of our son, Ethan, 10, we had two goals in mind: We wanted to raise money for the New Jersey Center for Tourette Syndrome, which had done so much to support us, AND to show Ethan he’s not alone in his struggle with TS.

Ethan really embraced the idea, and we raised thousands of dollars to support NJCTS and its statewide education outreach and peer advocacy programs. This year, our family is doing it again — and Ethan is even more excited! That may be because we have more than 40 people coming with us on a big, rented, yellow school bus!

Ethan can’t wait to get on that bus. Friends, family, and a half-dozen of Ethan’s friends, too, all will be packed on the bus heading up to Mendham for this year’s event, which is now called the Youth Advocate 5K for kids with neurological disorders. It’s only 2 1/2 weeks, taking place on Saturday, November 3. We can’t wait! Continue reading