Reflections on TS – a year without meds

My son has been off of all meds since Christmas Eve, 2007. It has been quite a year. We have witnessed dramatically reduced volatility, improved sleep, astronomically elevated levels of distractibility – ADHD combined with a twelve-year-old brain – and, in recent months, ever-worsening tics.

For years, I have said that tics are the least of my concerns when it comes to living with TS. Origami has had obvious tics since he was three years old, but his tics always were of what I would call “moderate” severity: he had many tics, they were always present, but all were relatively small. To an outsider, he looked like an extremely fidgety child who stammered. This year, especially in the last three months, Origami’s TS has changed from “moderate” to “severe.”

First, there was the extreme echolalia. If you have never witnessed someone retelling – re-enacting – all of Over the Hedge or an “Indiana Jones” movie, complete with sound effects, well, you just will have to take me at my word when I tell you that it is an excruciatingly awful experience. I am not sure if the echolalia has ebbed recently, or if we just have become numb to it, but it is not inducing migraines in the same way as it was earlier in the year.

The tics went to a new level of severity in September. The worst one is a “flipping”tic. O lunges forward at the waist, arms flung stiffly out behind him. He looks like he is about to do the long jump or dive into a swimming pool. On a really bad tic, O will actually flip all the way over! On several occasions, O has had one of these tics at tae kwon do – while in the middle of a jump or spinning kick. It really hurts to see the poor kid flip over in mid-air and go flying across the room; O already has injured his groin doing this, and I worry that he will suffer more serious injuries in the future.

Efforts to stem the flipping tic using habit reversal have backfired. We have tried to help O resist the tic by crossing his arms over his chest. The result: the tic comes out anyway, through O’s head and neck. So, now, O also spends much of the day jerking his head to one side. This tic is rather pronounced: I was walking toward O at the mall last week. Before it registered in my mind that the child was O, I found myself thinking that that poor child had an obvious, painful-looking head/neck tic. O later confirmed that the tic is, indeed, painful.

So, what is a parent to do? The available medications help – a little bit. But the available medications also have many side-effects. We discontinued meds when we decided that the side-effects were worse than O’s symptoms. Now, I am not so sure that I can still say that. However, I also believe that O is old enough to have a voice in his own treatment. I have mentioned meds as a possible option to manage the tics and the tic pain, and O has expressed absolutely no interest in resuming medication. So, I do my best to help. I offer regular back rubs, pain relief, and heat, along with concern and sympathy, and I keep hoping that the tics will decrease – soon.

Math teachers

A new study finds many math teachers are just one chapter ahead of their students. Unsurprisingly, this situation affects (negatively) the quality of math instruction.

I guess I can beat myself up a little less -- maybe -- about feeling challenged by my boys' Art of Problem Solving textbooks.

Yet another Nebraska post

I admit that I am not able to follow this story very closely, due to external demands (i.e., family). I did want to share this item from Slate's "XX Factor," in which Dana Goldstein looks beyond the sensationalistic consequences of Nebraska's safe haven law to consider why a parent would surrender an older child.

The new face of ADHD

Also from The New York Times: That swimmer guy is the new role model for kids with ADHD. Parents and professionals debate whether ADHD should be seen as a positive thing or as a disability. [My take: sometimes one, sometimes the other. Why not just call it a difference and move on, instead of trying to judge it?]

A doctor's ties to J & J

The New York Times reports today on Dr. Joseph Biederman, who, apparently, has been earning far more money through his ties to Johnson and Johnson than he had been telling his employer, Massachusetts General Hospital.

Noteworthy quote from this story: "Dr. Biederman’s work helped to fuel a fortyfold increase from 1994 to 2003 in the diagnosis of pediatric bipolar disorder and a rapid rise in the use of powerful, risky and expensive antipsychotic medicines in children."

Overparenting

An interesting article on "helicopter parenting," courtesy of The New Yorker.

Idiots with publishing contracts

I walked into the "Borders Express" at the mall tonight and saw this book prominently displayed on a shelf at the front of the store. Now, I do have a sense of humor. I enjoy "South Park" much more than I probably should, and I absolutely understand the importance of being able to laugh at ourselves. But this book is stupid, offensive, pointless and unnecessary. So I complained, and the guy working at the store was considerate enough to remove the book from the front display; of course, he might have put it right back out front as soon as I left, who knows. Other people with whom I have interacted would have just shrugged and said "So what?" so this guy gets points for at least pretending to care.

So here I sit, imagining what the next titles in this series might be: Crippled Chimps? Retarded Houseplants? I think my time will be better spent giving the TSA a "heads up."

About that bullying study...

Slate takes the New York Times to task for its story on how bullies enjoy bullying. Apparently, the article was more of a re-hash of a press release than anything else.

Another Nebraska update

The number of children surrendered in Nebraska emergency rooms has tripled since the state's governor announced that the safe haven law will be rewritten.

A quote from the article: "'These are largely families at a point of incredible desperation," said Wayne Sensor, chief executive of Alegent Health. "They aren't bad parents or bad kids. They simply don't know what services are available out there."'

"Why Parents Expect Too Much From Their Kids"

A thought-provoking article on Slate from Alan Kazdin. Do I agree with it? I don't really know right now; it has been a long, exhausting week, and my kids are, yet again, screaming instead of playing soccer together.

How lovely

"Bullies Enjoy Seeing Others Suffer"

College after tenth grade?

An interesting new proposal from New Hampshire.

Rainy parts of country show higher autism rates

...but researchers do not think the rain per se causes autism. Read the story here.

Nebraska update

http://news.yahoo.com/s/ap/20081029/ap_on_re_us/safe_haven

Lawmakers are talking about amending the law to apply only to infants up to three days old.

A new kind of low

This year's presidential campaign has been chock-full of appalling comments and episodes. The overwhelming majority of these unfortunate incidents have no real relevance to this blog, so I keep sitting on my hands and resisting the urge to "get political." This particular article, however, is tasteless, offensive, and, as I tell my children when they utter something especially unfortunate or inflammatory, really unnecessary.

"Taking Things Apart"

...along with "All About Pirates" and "The History of Snack Food," "Taking Things Apart" is an elective offered at a small high school for boys on the autistic spectrum. This is a very interesting article - check it out!

Can "green breaks" help with ADHD?

-- A small study suggests that nature breaks might help children with attention problems. I do not know what to make of this. In our experience, time outdoors does help my ADDDDDHHHHHD child focus and settle -- it's a good thing that he is wild about birding! This increased focus has never, ever resulted in improved schoolwork or even in improved focus on schoolwork. The positive changes last only as long as we are outdoors. At the same time, studying outdoors is impossible, because my son always ends up being hopelessly distracted by everything going on around him.

Read the story from The New York Times here.

Nebraska's "Safe haven" law

NPR reports that most of the children who have been left at emergency rooms under Nebraska's new safe haven law are over eleven years of age. These children tend to have severe behavioral problems and/or psychiatric disorders. Many of the parents and guardians involved are handing their children over to foster care because they have no resources to get their children the help they need. The first comment posted about this story expresses outrage over the parents' callous behavior. The second commenter speaks to the dearth of services available to children with mental illness.

I have no idea what is really happening with these families in Nebraska, but I can say that when our family faced past crises, there was little-to-nothing available until we found the TSANJ and the psychology clinic at Rutgers. I would call clinics and hospitals, begging for help, only to be told "Well, we're kind of busy" (translation: It's Friday afternoon, and we wanted to leave early.) "We have an opening available in six months;" "We only see children over age eighteen (???);" "Your child is too complex/difficult/inconvenient for us to handle." It very literally took me almost six years to find anyone who could help us, and then we were fortunate enough to be able to pay out of our own pockets for whatever was needed.

Memo to John McCain

When you have a few minutes to spare, please check out these pages. I know, I know, it's Wikipedia, but, hey, it's a start.

http://en.wikipedia.org/wiki/Autism

http://en.wikipedia.org/wiki/Down_Syndrome

Please note that these are, in fact, distinct and very different disorders.

Off-label use of meds in children

Courtesy of Slate:

http://www.slate.com/id/2202338/

Quotable quote from Slate: "Insurance companies prefer using medication to treat these [psychiatric] problems because it is less labor-intensive and, therefore, less expensive than psychotherapy. Anyway, they are inclined to be suspicious of treatments based on talking and thinking."

The paper can be found here.

It has been a while...

...since I posted anything here. I am still around, just a bit busy with homeschooling and following political and economic events. Birding seems to be taking up a lot of time around here, too.

Anyway, here is a story from today's New York Times, about what might be the next big bubble -- the NCLB bubble: http://www.nytimes.com/2008/10/13/education/13child.html?em

"Your Health" continues

The NPR series "Your Health" continues today with a story about support for college students with depression, bipolar disorder, and other mental illnesses. http://www.npr.org/templates/story/story.php?storyId=94997857

A related story discusses, briefly, the benefits of combining medication with cognitive-behavioral therapy: http://www.npr.org/templates/story/story.php?storyId=95008297

Thank you

Thank you to everyone who contributed to my fundraising effort for the Tourette Syndrome Association. I am pleased to say that I reached my fundraising goal, and I finished the race. I would have liked to post a better time, but at least I kept going when I wanted to quit. In a momentary lapse of reason, I registered for another half-marathon in November; I hope to post a better time in that race.

Interesting stories from NPR

From today's Morning Edition, "Learning to Thrive with Attention Deficit Disorder," a story about a young woman with ADHD who is learning to adapt to life as a college student. Another piece, "Ten Tips for College Students With Disabilities," accompanies the main story.

Another story from the same Morning Edition series, "Your Health," aired last week: "An Autistic Student's Journey to College."

Not even sure how to respond to this one

"Top Five Mad Geniuses" -- http://people.howstuffworks.com/mad-genius.htm

I could be offended by the article's premise, or annoyed by its aggressive superficiality, but then I might be guilty of having unrealistic expectations.

I look forward to an article on the "Top Five Most Remarkably Boring Geniuses" -- soon.

Ah, seriously, I think "intensity" is a character trait we might associate with genius, or with outstanding achievement in any field (sports, rock music, business). At the same time, I think these people are all over the spectrum, from "intense but essentially sane" (I will offer Nabokov as an example here) to "intense and eccentric" (Eddie Vedder, Paul Erdos, any number of other examples) to "seriously unhinged" (Keith Moon).

Tics

My son is having a bad tic week; yesterday, while we were buying groceries, the tics were so bad that he was in pain. This also was the first time I have seen him have big, jerky tics -- the kind that draw the attention of the most inattentive passers-by. Most of the time, O looks like a very, very fidgety kid, but this was an entirely different level of intensity.

The tics were distressing for O, but at the same time it was interesting to observe how aware he is of the cycles of his tics. He told me that every two to three months, he experiences a week when his tics are much worse than usual. During this week, the tics will be disruptive and often painful, but he knows that their intensity will subside again after a few days. I think recognizing what is happening, even if O does not know why it is happening, makes it easier to accept the bad days.

Nearing the finish line!

There are just over two weeks remaining until the Philadelphia Distance Classic. I have twelve-mile runs scheduled for the next two Sundays (after that, what is another 1.1 miles?), and then race day will be upon me.

My goals remain to finish without having a heart attack, and to raise $1000 for the TSA. I have almost reached the latter goal; right now, friends, family and even strangers have contributed $925. I am just thrilled by the response -- but I would like to reach the $1000 goal; it's such a nice, round number.

If you or anyone you know would like to contribute, you may do so here. I thank you, and so does my son.

Of use and interest for some of us

Here is a short but interesting piece from the latest issue of Harvard Magazine:

http://harvardmagazine.com/2008/09/the-teen-brain.html

Will you learn anything from reading this story? Probably not.

A CNN "news" story to stir the pot on this sunny, lazy, late-August day:

"Is Your Kid Really Gifted? Probably Not"

http://www.cnn.com/2008/HEALTH/family/08/27/gifted.kids/index.html

As superficial as the story is, someone still found it necessary to boil the article down to four bullet points at the top of the page.

One more month to go!

I have one month left to train for the Philadelphia Distance Run and raise funds for the Tourette Syndrome Association. I have almost reached my fundraising goal! Please help me reach that goal by making a donation here. Thank you!

It's getting uncomfortably close...

"Thanks" to Jennifer for sending me this story from The Onion, as I put the finishing touches on plans for the coming school year and continue to contemplate our options.

Helping a child with ADHD excel

An interesting story about a young man with an ADHD diagnosis who has been in the news a lot recently:

http://www.nytimes.com/2008/08/10/sports/olympics/10Rparent.html

The moral of this story is: "Too many adults looked at Ms. Phelps’s boy and saw what he couldn’t do. This week, the world will be tuned to the Beijing Olympics to see what he can do."

On that note, I will be taking time this week to thank those very few adults who look at my son and see what he can do, instead of seeing only problems.

The Neurological Roots of Genius

Thanks again to Corin for yet another interesting article:

http://www.sciam.com/article.cfm?id=high-aptitude-minds

"But I Did Everything Right!"

Thanks to Corin for sharing this link to a story in Newsweek on how genetic differences affect behavior: "DNA discoveries are revealing why even the best parenting doesn't have the effects experts promise, from breast-feeding to letting kids learn from mistakes."

The first reaction many of us are having to this story is "no kidding!" This information should be obvious, right? My second reaction was to remember how lost I felt when my son was very young, how I could not figure out why none of the parenting books and parenting experts seemed to offer techniques that worked with my child. I remember doubting my own instincts for the longest time; indeed, they were nearly impossible to hear over all of the solicited and unsolicited advice I received from every person who met my son.

So, if this story grabs the attention of a few parents who are feeling lost, confused, and overwhelmed, and they hear "It's not you! It's not something you did! Your child's brain really is wired differently." -- then great, the article has served a purpose.

Abuse allegations

From today's New York Times, a disturbing story about accusations of sexual abuse made against Dr. Mel Levine:

http://www.nytimes.com/2008/08/06/us/06pediatrician.html

ADHD and iron

Thanks to the folks at 2E Newsletter for bringing this article, about the link between low iron and ADHD-like behaviors, to my attention. I have to say, the article sparked all kinds of questions for me. First, while the doctor/author describes her son's symptoms as resembling pica, my first thought was of the sensory-seeking behaviors associated with sensory integration dysfunction.

It also was interesting, for me, to read about the link between restless legs syndrome, iron and dopamine levels (hi, Mom!). Note this sentence: "Iron has to be available in adequate amounts for your brain to keep its dopamine at a normal level." Which brings me to a third thought that popped into my mind.

My child with severe ADHD also had some pretty serious problems with tolerating iron when he was an infant. I had to discontinue my post-natal iron supplements because the little guy just shrieked all day (and night) long, and practically pooped gravel. Now, I am wondering about iron intolerance and ADHD. I also find myself wondering about the effects of a vegetarian diet on a child with ADHD.

So many questions, so little time and energy. I have the urge to do my own research, but I must confine myself to trying to sort out all of the questions inside my head, all the while chanting "correlation does not equal causality."

Speaking of Cogmed

Since the Curmudgeoness asks... yes, we've tried Cogmed. Here's one family's experience:

We decided to try Cogmed for documented issues with working memory. I first heard of Cogmed through reading The Mislabeled Child by the Eides, so I had been watching for it prior to its release in this country. (Full disclosure: I have a favorable bias toward Swedes, and the research behind Cogmed comes from Sweden. I have no stake in the company, aside from a bit of ethnic pride.)

I find it comforting that the research behind Cogmed has been published in peer-reviewed journals. Yes, this costs extra. So does the fact that, unlike other software being sold out there, Cogmed is a package deal that includes a fair bit of personal oversight and coaching.

In our case, this meant an initial meeting with a Cogmed trainer who is also a fairly well-known ADD specialist. It didn't hurt our that this woman is warm, wise, and broadly experienced. She worked well with my daughter, and my daughter took heart in the fact that she would check in with this trainer every week (by phone) to discuss any concerns and to get progress reports and encouragement.

Having the oversight of a psychologist was reassuring during the initial weeks, when the training seems to be making matters worse rather than better. It was quite unnerving, and it underlined the fact that trying to rewire the brain is risky -- especially if you're dealing with brains that are not neurologically typical to begin.

The Cogmed program is not necessarily fun, so you're called upon to offer various bribes.... uh, "incentives" ... for compliance. The bribe for doing the daily work is built into the software -- a silly little Nintendo-style game involving racing robots. For my daughter, the weekly incentive was a favorite meal and the grand prize was a remote control dragonfly -- not too terrible a price. In theory, I was also supposed to "coach" to my daughter during her training, to keep her on task and smooth out any difficulties. The reality was that I was more useful outside the room keeping her younger sister quiet. As a result, I didn't get to watch much of the training.

At the outset, my impression was that software was not that different from some of the other brain-enhancement software on the market. Later, though, I got to watch my daughter's final training session, and I came away impressed with the methodical way the program challenges different aspects of working memory. While there's more to attention than working memory, it seems clear to me that my daughter made real gains. She feels it was extremely valuable.

One particular illustration of a clear take-away is spelling. Prior to working with this software, my daughter couldn't hold more than three letters in mind at a time, which made her spelling a disaster. Her spelling improved immediately, based on the ability to hold five or six letters in mind. There seemed to be similar gains with math computation.

Another sign of significant change emerged during a family conversation shortly after the training. When my daughter opened her mouth to speak, I reflexively assumed she was interrupting yet another conversation with an off-topic remark. But, in fact, she was adding to the conversation with a relevant and useful bit of information, and adding it at an appropriate moment. I was so completely stunned by this new development that I now have zero recollection of what the conversation was about.

My daughter also points out that she has not left the house without shoes since.

These gains have not disappeared after a year. I'm as cynical as anyone about people marketing snake oil to desperate parents, but, for us, Cogmed seemed to perform as advertised. It's worth a look.

Cognitive training for ADHD?

The Homeschool Buyers Coop is offering a group buy on Brainware Safari "Cognitive Skills Game Software." I thought I would look into it, since inattention and impulsivity are serious problems around here.

I also thought it would be interesting to compare Brainware Safari with Cogmed, a cognitive training program for indviduals with ADHD. I found just a few sites that discuss both products:

http://www.sharpbrains.com/blog/2008/06/12/promising-cognitive-training-studies-for-adhd/

http://www.switched.com/2008/06/20/brain-games-booming-with-baby-boomers/

Well, to be honest, the above sites discuss Cogmed, with "Betsy Hill" posting a comment about the benefits of Brainware Safari on each page.

The Fool has shared her family's experience with Cogmed elsewhere; perhaps I can entreat her to post some of her thoughts on Cogmed...??

More on Savage

Still more on Michael Savage's thinking-before-speaking disorder. It's "funny" how some commenters immediately turned this into a "crazed liberals denying Savage his conservative/libertarian viewpoint" issue. Who knew that autism only affected liberals??

http://cityroom.blogs.nytimes.com/2008/07/21/radio-station-is-targeted-over-autism-comments

Seven radio stations in Mississippi, a notorious hotbed for left-leaning wingnuts, have dropped Savage's syndicated program as a result of his comments on autism:

http://www.nytimes.com/2008/07/23/arts/23arts-SAVAGELOSESA_BRF.html

Growing controversy

The New York Times picked up the Michael Savage controversy:

http://www.nytimes.com/2008/07/22/business/media/22sava.html

I still feel conflicted. On one hand, I feel that paying any attention to this joker is giving him exactly what he wants -- attention. I prefer the "don't feed the trolls" school of thought. On the other hand, the Fool's comment below reminds me that chances are many of Savage's listeners now think that autism is a fake diagnosis used to excuse poor behavior....

Another day, another controversy

Maybe it's just because I am tired in general, but I am at a loss when it comes to this story:

http://news.yahoo.com/s/ap/20080721/ap_on_en_ot/savage_autism

Part of me wants to be outraged, part of me is feeling manipulated by the media. Perhaps this quote from the story tells us all we really need to know:

"Savage, with more than 8 million listeners a week, is talk radio's third most popular personality behind Rush Limbaugh and Sean Hannity, according to Talkers magazine. He [ha]s made a living off bold, outrageous statements."

Moving along....

Restraint

NYTimes story suggesting that more and more schools are turning to physical restraint and other controversial methods for dealing with children who have developmental and behavioral problems:

http://www.nytimes.com/2008/07/15/health/15restraint.html

Program on Tourette Syndrome to air next week

ABC will be airing a one-hour program on life with Tourette Syndrome on July 15th at 10:00 p.m. Eastern time. Per the email I received today, "We are focusing on profiles of 4 young girls who - together with their families - taught us both the triumphs and challenges of living with TS." I am cautiously optimistic about this program, and I expect I will watch it. (disclaimer: my son was one of the children initially contacted to participate in this project) Yet, I do feel compelled to note that Tourette's affects four times as many males as females.

Tune in next week and judge the program for yourself.

It is not the age(ing) thing

Well, I am supposed to be working on a "Parents' Perspective" essay for the 2E Newsletter, and here I am, posting to my blog instead. The reason for this is fairly simple, once you accept the rather convoluted way in which my mind works.

Seattle is our family's adopted home -- even though we have not lived there for nearly nine years. Both of my boys were born in Seattle. I was exposed to jazz in Seattle, not to mention microbrews and the fact that there is more to Pearl Jam than "Jeremy."

Seriously, I had to love a city that seemed to have four coffeehouses and three teriyaki joints at every intersection, a city that hummed with intellectual energy, a city with clean air and crazy light, a city where the "fringe" element was so omnipresent that it very nearly became the mainstream.

So it should not surprise anyone who knows me to learn that, this past month, I have been hopelessly distracted by Pearl Jam's all-too-short East Coast tour. For the past week, I have been able to think of nothing but Eddie and the rest of the guys, playing their hearts out for "complete maniacs" like myself. During "Dissident" (a song which just absolutely sounds like Seattle) last Friday, I turned to my husband and screamed "We have got to move back home!"

Ahh, memories....

But what does any of this rambling have to do with this blog??

It is pretty simple, really. I found myself recalling those mornings when I would put my son, "Origami," who then was just a toddler, in the car for our weekly field trip to one of Seattle's many kid-friendly attractions. Our first stop was a nearby espresso stand, where, as part of our weekly special treat (hey, we were on a graduate student's budget!), I would try to clear away the low-hanging clouds with some strong caffeine, and Origami would get a madeline cookie to decimate as we drove around town.

Many weeks, we would arrive early at the Seattle Center. Origami would spend half an hour or so scooting around in the Little Tikes cars inside the Center, smiling happily. A few early-bird senior citizens would be dancing to big band sounds, but in general the Center House was quiet. As 10:00 neared, we would head over to the Pacific Science Center, or downstairs to the Children's Museum.

Big deal, you are saying, right? Show me a mother who does not look back fondly on the time when her child was sweet and innocent. Show me someone who does not miss their lost youth, you say.

But, for me, there is more to it than that. Yes, I admit that as my hair re-grows, each lost hair seems to be coming in gray. I am not happy about it, but I try to accept it.

What I really miss is that time before we really suspected that something was "wrong" with Origami. O's infancy was, simply put, a brutal time in our lives -- but it passed. Once Origami learned to walk, he was able to take on the world around him, and he did so with great energy and enthusiasm. We had nearly two years during which most days were full of -- exhausting -- fun as we helped our little bundle of energy suck in as much information as he possibly could acquire. We still were tired, but we were tired in a good way.

So, I guess what I am saying is, I miss the simplicity of that time, even though packing for a day around town involved multiple changes of clothes for both of us, towels, an endless supply of toddler snacks, and a sore back (for me). I miss being able to simply enjoy an activity, without always waiting for the other shoe to drop. I miss the time when I did not need to be always on the alert for an impending explosion or implosion; I miss not having to worry about what other people thought of my child and of me as a parent.

"Wednesday is TS Day"

Courtesy of the Tourette Syndrome Association of New Jersey (http://www.tsanj.org/):

Today, Congressman Albio Sires (D-NJ) introduced a resolution instituting a national TS Wednesday!

Speaking to the House of Representatives, Rep. Sires said Tourette Syndrome is “a misunderstood disorder affecting an unknown number of people [because TS is] often misdiagnosed.” He continued, by issuing a call for TS awareness and recognized the work of NJ Center for Tourette Syndrome and Associated Disorders as “the first and only program of its kind in the nation and serves as the model for others” across the country.

This awareness effort in Washington echoes the advocacy by New Jersey State Senator Kip Bateman to designate “Wednesday is TS Day!” throughout the Garden State.

We are enormously grateful to Congressman Sires and his staff for surprising us with this fantastic news!

Join us in celebrating by helping to spread the word that “Wednesday is TS Day!”

Autistic toddler kicked off of airplane

http://abcnews.go.com/GMA/story?id=5238571&page=1

There are over one thousand comments to this story, thus far. Since I try to limit the amount of stress in my life, I will not be reading them.

Alternative treatments for ADHD?

A New York Times article on non-drug treatments for ADHD. It does not say much that is new, but it is nice to see that some research on options such as fish oil is happening.

http://www.nytimes.com/2008/06/17/health/17well.html

Running for Tourette's

For my son, who is anxiously awaiting better treatment or a cure, I am running the Philadelphia half marathon in September to raise money for Tourette's research. To donate or help, go to this link: http://www.active.com/donate/08pdc/runforts

Another story for the "Why we homeschool" file

http://www.tcpalm.com/news/2008/may/23/st-lucie-teacher-has-class-vote-whether-5-year-old/

A kindergarten teacher in Florida is getting more attention than she anticipated when she decided to have her students share, publicly, what they did not like about their classmate, and then vote on whether or not he should be allowed to stay in class.

The boy was voted out of class, 14-2.

The child is in the process of being evaluated for special needs and subsequent (we hope!) accommodation, although it is suspected that he has Asperger Syndrome and ADHD. Why that evaluation process, which was begun in February, has not yet been completed is anyone's guess.

This story reminded me of when my son was in Montessori preschool, and the other children were taught that he was "the bad boy." The teachers liked to joke, to me and to other parents, about how they sent my son out of the classroom whenever there were visitors, so he would not reflect badly on the school. Just think, I was paying good money to have people like that care for my child....

Adults and ADHD

A new study suggests ADHD can cost adults twenty workdays per year or more:

http://news.yahoo.com/s/ap/20080526/ap_on_he_me/attention_deficit_disorder_work

I thought the list of supporters of this study was interesting.

TS "webinar" update

The complete TS "webinar" featuring Dr. Lawrence Brown from Children's Hospital in Philadelphia can be found/downloaded here: http://njcts.org/wordpress/?p=7

Note also that the above link includes a large number of questions that were asked and answered after the conclusion of the webinar.

Off-topic but worth sharing

Irena Sendler died Monday, at age 98. She is credited with smuggling nearly 2500 children out of the Warsaw Ghetto during World War II.

http://news.yahoo.com/s/ap/20080512/ap_on_re_eu/obit_sendler

From the story:

"Every child saved with my help and the help of all the wonderful secret messengers, who today are no longer living, is the justification of my existence on this earth, and not a title to glory," Sendler said in 2007 in a letter to the Polish Senate after lawmakers honored her efforts in 2007.

Something to share

Maybe it is a bit silly, but I really liked this passage from Bill Bryson's A Short History of Nearly Everything. I stumbled upon it again this evening, and I just wanted to share:

A great deal of what we know about surviving at extremes is owed to the extraordinary father-and-son team of John Scott and J.B.S. Haldane. Even by the demanding standards of British intellectuals, the Haldanes were outstandingly eccentric. The senior Haldane was born in 1860 to an aristocratic Scottish family but spent most of his career in comparative modesty as a professor of physiology at Oxford. He was famously absent-minded. Once after his wife had sent him upstairs to change for a dinner party he failed to return and was discovered asleep in bed in his pajamas. When roused, Haldane explained that he had found himself disrobing and assumed it was bedtime. His idea of a vacation was to travel to Cornwall to study hookworm in miners.

"Adopted Teens Face Higher Risk for ADHD"

Courtesy of NPR. The story actually discusses ADHD and ODD:
http://www.npr.org/templates/story/story.php?storyId=90184184

Use of anti-psychotic drugs by children is rising in UK and US

Posted without comment:

http://news.yahoo.com/s/ap/20080505/ap_on_he_me/psych_drugs_children

Dyslexia and language

Thanks to Corin for bringing this article to my attention. It is interesting, if unsurprising:

"How the Brain Learns to Read Can Depend on the Language"
http://online.wsj.com/public/article/SB120965705088459637-yQaBdgYCbcVDimmKII6QpiuAgME_20090502.html?mod=rss_free

Melatonin

"Melatonin therapy for circadian rhythm sleep disorders in children with multiple disabilities: What have we learned in the last decade?"

http://journals.cambridge.org/action/displayAbstract?fromPage=online&aid=255857

Stuttering and Tourette Syndrome

The most interesting part of Wednesday's "webinar," in my opinion, was the brief discussion of stuttering and Tourette Syndrome. I had assumed that what resembled stuttering was actually a vocal tic, but now I am not so sure. I have known a few people who stutter, and their disfluencies (I just learned a new word!) seem, to me, to be qualitatively different from what I see in TS (sample size of one, admittedly). Here are a few links about TS and stuttering; decide for yourself:

http://www.stutteringhelp.org/Default.aspx?tabid=440
http://www.asha.org/about/publications/leader-online/archives/2002/q3/020806a.htm
http://www.neurologyreviews.com/feb02/touretts.html

"Comfortably Numb"

I am hearing snippets of this show in between running in the backyard with the kids and making lunch. Today on Fresh Air, Charles Barber discusses his book, Comfortably Numb: How Psychiatry is Medicating a Nation. Find more information here: http://www.npr.org/templates/story/story.php?storyId=89882885

I have mixed feelings about medications. I have to agree, though, with Barber's statements about the effectiveness of cognitive-behavioral therapy. We have seen many benefits from CBT.

NJCTS webinar notes

Here are most of my notes from a talk by Dr. Lawrence Brown, professor of neurology at UPenn. All errors and omissions are mine, I have attempted to take comprehensive (if somewhat illegible) notes, but it is possible that I misheard or have misquoted something. This should not be taken as medical advice, read at your own risk, etc.

Dr. Brown's research focus includes; TS and ADHD drug trials; new methods for social skills training; development of emerging treatments. An archived version of Dr. Brown’s presentation will be available on the NJCTS website (www.njcts.org) within seven days.

Tics tend to increase in times of stress/anxiety, tend to decrease with distraction or when the child is focused on something. Kids tend to tic more at home. It is possible to tic in one’s sleep. The maddening aspect of treating a disorder that waxes and wanes….

Note that tics can overlap with compulsive behaviors.

Re: DSM-IV criteria: The “causes distress” requirement might be removed for the DSM-V. Note the importance that the tics not be caused by something else.

TS is not defined by co-existing neuropsychiatric problems.

How prevalent is TS? Somewhere between 0.1% and 1.0% Studies of children near Rochester, NY and in CT (Yale) suggest rates of 0.3 – 1.0%, with another 20+% demonstrating transient tic disorders. Israeli army study showed 1:2000 male recruits, 1:5000 female recruits.

When/why to treat TS: -- causes functional impairment; causes psychosocial impairment; causes school disruptions; causes pain. Meds often are not needed for the tics; treat the disabling symptoms, which often are the co-morbidities. Reassess the need for meds when the child is doing well.

“First-line” meds:
Alpha-adrenergics (Tenex, Catapres); can take four to six weeks to take effect
-- are effective about 50% of the time; may improve sleep, aggression and ADHD
-- are sedating

Atypical neuroleptics: Abilify and Risperdal

Typical neuroleptics:
Haldol, Orap, Prolixin
Topamax (also used for headaches, weight loss)
Levetiracetam (sp?)
Clonazepan (especially good when anxiety is an issue)
Baclofen (good for tics and spasticity; sedating)
Botox (good for painful neck, extremity, and eye tics)

Non-pharmacological treatments:
Cognitive-behavioral therapy (CBT)
Habit reversal; exposures
Education
Relaxation
Counseling
TMS (trans-cranial magnetic stimulation)

Comorbid issues:
ADHD
OCD
Other anxiety disorders
Mood disorders (and rages)
Emotional lability
Learning disabilities
Sleep disorders
Migraine

Treating TS/ADHD
- behavioral/educational interventions
- stimulants
- alpha-adrenergic antagonists
- Strattera
- Imipramine, bupropion
- Use combination of neuroleptics and stimulants (to combat tics) as a last resort


Stimulants are most effective, even if there is a temporary increase in tics. Strattera is effective about 50 percent of the time, often is less potent/effective than stimulants. ADHD tends to precede tics by 2-3 years. Stimulants may exacerbate or provoke tics. Co-morbid ADHD is a leading indicator of academic problems, even after accounting for the effects of TS and learning disabilities.

60-75% of kids with TS have ADHD

TS/OCD
-- OCD looks different in kids with TS
-- Anxiety, phobias, depression
-- The irrational fear of consequences associated with OCD may not be present with TS/OCD
-- 20-30% of kids with TS meet OCD diagnostic criteria, 50-60% demonstrate obsessive-compulsive behaviors

Treating TS/OCD:
CBT works well. SSRIs work well; an 8-12 week trial of the med is needed to see if it works. CBT/SSRI combination can be very effective.

SSRIs and suicide:
-- There seems to be a lower risk of suicidality if the SSRIs are being given for OCD rather than for depression. Frequent monitoring is needed. No evidence of increased rate of suicide (vs. suicidality). Need to balance the risk vs. need for treatment

“Natural History” of TS:
Age: 4-6 ADHD appears
6-8 simple tics appear
7-9 OCD appears
8-10 complex tics

Tics peak around age ten. 1/3 experience full remission; 1/3 experience some improvement; 1/3 experience stabilization without worsening. Tics often are outgrown. Co-morbid issues, however, are not outgrown.

Questions:
Q: Effects of diet in childhood on tics?
A: reports are unsubstantiated. A recent NYU study on the effect of Omega-3s and fatty acids showed no change in tics.

Q: Explain premonitory urges?
A: [explanation provided] The interesting thing about these urges is that they suggest a sensory component to TS.

Q: Elaborate on the persistence of OCD/anxiety into adulthood?
A: It is important to maintain a healthy attitude. An increase in problem behaviors is seen if these issues are left untreated into adolescence.

Q: Are internal tics possible?
A: Yes, tics can happen anywhere.

Q: If the tics are severe, des that mean the child will not outgrow them?
A: Reasons for remission are not understood. There is no obvious correlation between severity and probability for remission.

Q: PANDAS – is it real?
A: It is a hypothesis. It is possible that a strep infection could cause an autoimmune reaction which could cause a movement disorder (usually chorea). Dr. Singer at Johns Hopkins performed a study examining kids for evidence of strep and tics, and saw no relation between them. Does not think it is a serious problem, certainly it is not a public health hazard.

Q: Can stuttering be a verbal tic?
A: YES. A doctor at CHOP has been studying stuttering and TS. Stuttering has been shown to have a biological correlate in the basal ganglia, which also are linked with TS.

Q: Why do rages occur with TS?
A: Doesn’t know why. Frustration, perhaps? – especially when linked with OCD/perfectionism?

Q: How does CBT help with TS?
A: It helps with urges. By far is most effective with co-morbid anxiety disorders

For the Do-It-Yourselfers

Thanks to my friend Jennifer for the "heads-up" on this story.

http://www.nytimes.com/2008/04/20/education/edlife/continuinged.html?pagewanted=1

"Of the 100 students in Dr. Reeve’s three-year-old program, 17 are parents of children with autism or related disorders. Like Ms. Duddy, they have decided that completing a master’s degree — and investing some $25,500 in tuition — is worth it to help their children. Along the way, most have been inspired to begin new careers. Ms. Duddy hopes to train therapists once her own education is complete."

I thought this was an interesting article, for a few reasons. I have been known to observe that I have accumulated enough knowledge and life experience for a master's degree in whatever field we want to assign to "raising and educating a twice-exceptional child." I certainly have felt, at times, that I would be better off handling all aspects of my son's care myself.

The comments about New Jersey resources also caught my attention. There are many things I do not like about life in New Jersey, but I readily admit that our decision to move here turned out to be the best thing we could do to help Origami with his issues. Birding seems to be very popular here, as well. :-)

Co-morbid disorders and Tourette Syndrome

"In children with Tourette's Syndrome, comorbid conditions such as attention deficit-hyperactivity disorder, obsessive-compulsive disorder, and anxiety have a far greater impact on the children's quality of life than the tics themselves...."

http://www.medscape.com/viewarticle/529621

What is Tourette Syndrome?

Tourette Syndrome, or TS, is more common than you might think. However, TS tends to be very poorly understood by people who do not have direct experience with it.

To learn about Tourette Syndrome, visit http://www.tsa-usa.org/. Here are a few quick facts: TS affects about one person in a thousand, although some people think that as many as one person in a hundred may have subclinical symptoms. Very few individuals with TS -- fifteen to twenty percent -- have coprolalia (http://en.wikipedia.org/wiki/Coprolalia), which is the obscene language most people associate with Tourette's.

Motor tics (blinking, twitching) and vocal tics (grunts, whistles) are characteristic of Tourette Syndrome. TS does not affect an individual's cognitive abilities, nor does it affect lifespan. TS is an inherited disorder; boys carrying the gene for Tourette's are much more likely than girls to display symptoms. Tourette's is a neurological disorder -- in other words, it is not contagious.

Useful links about Tourette Syndrome:

http://www.tsa-usa.org/ -- The website for the Tourette Syndrome Association.

http://www.tourettesyndrome.net/ -- Tourette Syndrome “Plus” website. Individuals with Tourette Syndrome frequently have co-morbid disorders such as ADHD, OCD (obsessive-compulsive disorder), Asperger Syndrome, bipolar disorder and depression. This website is dedicated to providing knowledge and support to individuals who have TS “plus.”

http://www.uniquelygifted.org/ocd.htm -- The Tourette’s/OCD page on Meredith Warshaw’s “Uniquely Gifted” site.

http://en.wikipedia.org/wiki/Tourette_syndrome -- Tourette Syndrome on Wikipedia, a “featured article.”

http://members.tripod.com/~tourette13/ -- “The Facts About Tourette Syndrome” – the first, unofficial, TS web page.

http://www.tourettes-disorder.com/dsm.html -- Diagnostic criteria

http://www.ocfoundation.org/ -- Obsessive Compulsive Foundation. 25-50% of individuals with TS also have OCD.

While the exact number of people with TS is not known, the most recent estimates suggest that one out every 200 school-age children has Tourette’s.

Books about Tourette Syndrome:

Uttom Chowdhury, Tics and Tourette Syndrome. (http://www.amazon.com/Tics-Tourette-Syndrome-Handbook-Professionals/dp/184310203X) – A concise, information-packed book. Extremely informative, yet short enough to read in one sitting.


Elaine Fantle Shimberg, Living With Tourette Syndrome. (http://www.amazon.com/Living-Tourette-Syndrome-Elaine-Shimberg/dp/068481160X) – A very good book about life as an individual with TS. As the book was published in 1995, refer to more recent publications for information on medications.

Marilyn P. Dornbush and Sheryl K. Pruitt, Teaching the Tiger. (http://www.amazon.com/Individuals-Education-Attention-Disorders-Obsessive-Compulsive/dp/1878267345) A practical guide to teaching children with TS, ADHD and/or OCD. This book also was published in 1995, so the appendices (reading lists, organizations, software) could use updating, but the core of this book remains very useful. A quick read despite its length.

Tracy Haerle, Children with Tourette Syndrome: A Parents’ Guide. (Brand new second edition! -- http://www.amazon.com/Children-Tourette-Syndrome-Parents-Guide/dp/1890627364) Another good book, especially for parents of children with TS. The updated second edition should contain more useful information about medications.

Adam Ward Seligman and John S. Hilkevich, Don’t Think About Monkeys: Extraordinary Stories Written by People with Tourette Syndrome. (http://www.amazon.com/Monkeys-Extraordinary-Stories-Tourette-Syndrome/dp/1878267337) A fascinating look inside the minds of individuals with TS. Very good for parents and relatives, not all essays are appropriate for children.

New tools to explore autism

From the MIT Technology Review:

"Mapping Genetic Abnormalities in Autism"
http://www.technologyreview.com/Biotech/20557/

The "P" word

Change is afoot. I can feel it, although I cannot quite put my finger on it. I can smell it at times, especially after a long run or a strenuous tae kwon do class. I can see it when I pay my grocery bill, and when I open my refrigerator door to find shelves full of empty containers.

Puberty is coming.

I do not know when it will strike with full force. While I am learning as quickly as I can, I am not quite sure how it will arrive, but it is on its way, and I am nervous.

I have spent the last eleven-plus years trying to understand my son and his brain. It has been hard work, but I have kept struggling to learn more, and I think my efforts have paid off. Now, just as I begin to feel that I am on top of my game, the rules are changing.

Tourette Syndrome is a funny thing. Nobody really seems to know just how common or uncommon it is. It waxes and wanes, just like the moon. When life is relatively calm, you wonder if your child has turned a corner in his treatment. Did the latest medication or intervention really work, or did it merely coincide with a waning of symptoms? Will this waning phase last a year, a few months, another week, or just ten more seconds?

Many parents of children with Tourette Syndrome wonder what will happen when a big bolus of testosterone -- most individuals with TS are male -- is injected into the mixture of tics, ADHD, obsessions, compulsions and occasional rages. We all know that puberty is a difficult time for everyone, but we cannot help but suspect that our children will face more challenges than most.

We wonder, will our child’s tics disappear as he reaches adulthood? Will he be able to lead a relatively normal life? The answers are uncertain, at best. Experts tell us that some children’s symptoms improve after puberty, some remain unchanged, and some become worse. There is no way of knowing beforehand which outcome your child will experience. One can only watch and wait with some combination of hope and anxiety.

So I watch, and I wait; and I buy more healthy snacks; and I retool the budget to accommodate the skyrocketing grocery bills; and I try to offer gentle reminders about the virtues of good hygiene; and I offer coaching on those few social skills that I possess multiple times each day; and I try to keep a mental checklist of good changes and not-so-good changes that I observe; and I hope, and I hope, and I hope that the “good” list turns out to be longer.

Why do children lie?

Thanks to Corin for bringing this story to my attention:
http://abcnews.go.com/Health/story?id=4566602&page=1

Premature babies and autism?

A small study suggests that babies born very prematurely may experience a much higher than average incidence of autism: http://news.yahoo.com/s/ap/20080402/ap_on_he_me/autism_preemies

Fixing NCLB

An article in today's Slate about fixing NCLB and education policy in general:
http://www.slate.com/id/2187680/

"Talk of the Nation" on brain enhancers

Almost lost amidst the Bear Stearns coverage: "Talk of the Nation" today interviews Dr. Barbara Sahakian about "performance enhancing drugs" for the mind -- including Provigil and ADHD medications. http://www.npr.org/templates/story/story.php?storyId=88405785

The interview stems from Dr. Sahakian's article, published in Nature: http://www.nature.com/nature/journal/v450/n7173/full/4501157a.html Note that you need to pay for the article....