Just breathe, again

http://www.physorg.com/news178374999.html

Is this why controlling breathing helps? Thanks to Hoagies.

Pearl Jam - Just Breathe

New research on the biological basis for ADHD

The study was published in the Journal of the American Medical Association, and the Washington Post published on article on the study here. Thanks to the 2E Newsletter for the link.

Do ADHD meds lead to a lower crime rate?

Hmm. After years of hearing how using ADHD meds leads to a life of crime, now, courtesy of The Economist, we have an article suggesting that the use of ADHD meds may have led to a drop in the violent crime rate. Presented. . .without comment.

"Neural Substrates of Self-Regulatory Control in Children and Adults With Tourette Syndrome"

Thanks to Shulamit for the heads-up about this paper.

Leaky gut -- no longer just a hypothesis

Researchers at University of Maryland are doing some really interesting research into the mechanisms behind "leaky gut" and its role in autoimmune disease and other disorders:

http://somvweb.som.umaryland.edu/absolutenm/templates/?a=893&z=5

This comes on the heels of Dr. Fasano's piece about Celiac disease in the August issue of Scientific American. No practical take-away as yet, but this is very cool, paradigm-shifting stuff, and it will be very interesting to see what other researchers do with this information over the next couple of years.

New ADHD med approved

The FDA has approved Intuniv for treatment of ADHD in children. An extended-release form of guanfacine, "the way it works is unclear, but the drug is thought to directly (sic) engage receptors in the brain's prefrontal cortex."

"The Autistic Surfer"

Check out this very interesting article by Jonah Lehrer about surfer Clay Marzo, who has Asperger Syndrome.

"Mad But Glad"

-- An interesting video/program about Tourette Syndrome and creativity.

"ADHD on the track"

Here is another nice article about sports and ADHD. We have been urging our son to run as a menas of managing his ADHD. Now, he is training for a half-marathon that he will run with me in the fall. He is doing the half-marathon as a fundraiser for the Tourette Syndrome Asociation. I have to admit, however, that recently exercise has had no impact at all on O's distractibility.

Asperger Syndrome and cinema

Yesterday's New York Times featured this story about three upcoming films that focus on Asperger Syndrome.

What is the long-term impact of using ADHD medications?

Thanks to Carolyn K. for the heads-up about this article from Scientific American Mind.

This caught my eye

At the end of a story in our local paper about the most recent school board meeting, I saw this paragraph:

Two parents of special education students, who have regularly attended meetings since last fall, again talked about questions they submitted to administrators regarding their children. They had received answers to over 100 collective questions submitted and are now waiting for answers pertaining to their individual children. [The board president] said the questions are in the hands of district professionals and it would take time to answer them.

I expect there is more to the story than this. As a homeschooling parent, I am not "in the loop" with regard to issues in our local district. I do know that I have seen and heard a number of unkind remarks about these parents and about providing services and accommodations to children with special needs. I was rather suprised by this, since the townspeople who know us and who, more specifically, know my son, in general have been very tolerant, accepting and understanding. Perhaps I am merely hearing the opinions of the lunatic fringe?

At any rate, when I see that these parents have been advocating for their children for the past year, at least, and they do not seem to be making much progress, I wonder just how much of a battle we would have to wage to get O the accommodations he needs. But, again, perhaps there is more to the story....

Diane Rehm today

The second hour of the Diane Rehm Show today deals with bipolar affective disorder. Based on what I can hear over the homeschooling, it sounds like a very interesting program. Click on the link to hear the segment.

That old falling-between-the-cracks feeling

Let's get this out of the way first: I have tremendous respect for the Eides and their work.

Now then: When I read the article about ADHD and motivation, I laughed, bitterly. I have always been opposed to the idea of paying children for getting good grades. Now, I sit here and watch my son stalling, whining, and generally refusing to do his incomplete work. Did I offer incentives to get him to complete his work? Oh yes, I did. Current incentives include: a trip to the movie theater to see "Up;" purchase of awesome new binoculars for birding (I offered to split the cost with him 50-50); a stack of biology textbooks that O has been dying to get his hands on. Total cost?? Well, getting him to finish this work and move on would indeed be priceless.

So, I think we all can agree that these are significant incentives. This must mean the work was completed quickly and efficiently, and O is knee-deep in bio books and blissfully happy, right?

Wrong.

Math was completed over one weekend, wherein my husband dragged O, kicking and screaming, through half of a math textbook. The book report took two more weekends and multiple evenings during the week. The economics project, which was due two weeks ago, is proceeding on a similar trajectory. O sat at my computer for eight hours yesterday, and wrote one sentence. I deleted all games from the computer, password-protected my files, and advised the young man that I am able to track his internet wanderings. He insisted that he is motivated, he wants to be done with his work, he cannot wait to read that ornithology textbook, he is absolutely terrified that "Up" will no longer be showing when his work is done. He wrote one sentence.

So, here we are.

We met with O's new therapist this week. I mentioned the Eide's piece on ADHD and motivation. J said well, unfortunately, as is so often the case, the results are less clear-cut when dealing with individuals who have more than just ADHD. It can be complicated to tease out the underlying reasons for certain behaviors. Are they rooted in ADHD, or are they rooted in other disorders?

If I had a dollar for each time I have been told that, unfortunately, the situation is far more complicated when there are multiple co-morbid disorders, I would have enough money to hire someone else to sit beside O and make him finish his work. Until that happens, I guess I will pass the time by reading Gill's Ornithology. It's not like O will be reading it any time soon....

ADHD, incentives and motivation

Recently, the Eide Neurolearning Blog featured an interesting item on motivation in individuals with ADHD. "Rather than ADHD appearing as a fixed deficit in executive function, increasing evidence suggests that children (and adults) with ADHD behaviors are showing impulsivity mainly in non-reward situations." Thus, the solution might be to offer greater incentives to complete tasks. Perhaps we (parents and teachers) might have more patience and understanding for the child who would rather dash outside and play than complete his spelling homework.

Then again. . . .

FDA to vote on use of anti-psychotics in children

An FDA panel meets today and tomorrow to debate the use of Seroquel, Geodon, and Zyprexa in children. The panel will vote tomorrow on whether or not to approve the drugs for pediatric use.

Depression in teens

Time reports that a new study published in JAMA indicates that group cognitive-behavioral therapy may be effective in preventing episodes of depression in teens.

How not to write

Here is an article from USA Today that attempts, I think, to be supportive of homeschooling. The piece is so disjointed and poorly written, and so full of typos and flawed leaps of logic, that I am far less excited than I might otherwise be about its ostensible pro-homeschooling slant.

More on abuse of special-needs kids in schools

From last night's USA Today.

Go get 'em!

"Special-needs kids abused in schools"

Medicinal marijuana and children

In DoubleX's "debut," a mother writes about why she gives her son marijuana. "Sometimes, you just have to go with your gut."

Taking on Jenny McCarthy

Oprah Winfrey gives Jenny McCarthy a pulpit from which she can air her views on vaccines. Arthur Allen, among other people, is not happy about this.

Autism breakthrough?

Researchers find first common autism gene.

More ADHD news

A review of the current state of ADHD management.

Taking a look at ADHD

Courtesy of my husband, some articles from Medscape (free registration required) about ADHD:

ADHD Takes a Toll on Family Relationships

ADHD Affects Motor Control in Boys More Than Girls

In ADHD Brain Maturation Follows Normal Pattern, But Is Delayed
Well, I thought this article was interesting. I have maintained for some time that ADHD is a developmental delay -- an opinion that causes some people to bristle.

How Does the Brain Differ in Pediatric Bipolar Disorder vs Severe Irritability and ADHD?
This is an interesting piece in light of the uptick in diagnoses of bipolar disorder. There seems to be some confusion when it comes to distinguishing between very rapid-cycling bipolar disorder and the lack of emotional regulation that can come with severe ADHD.

I am certain that I have posted this story before, but it is worth posting again: Hallucinations, Other Psychotic Symptoms in Children Linked to Use of ADHD Medications

Do food additives cause hyperactivity? This study suggests there might be a link.

My "other" child

It wasn’t supposed to go like this.

I was thinking of writing about my “other child,” the non-2E kid, the chameleon. I thought I might write about the people over the years who have asked me if my “other child” is gifted, too. I could write a book about "Bilbo” – how, when he was eleven months old, he grabbed my face with both hands and asked “Mama, is that a car over there?” -- when I had no idea he could talk; or how I sent him to pre-school when he was two and a half years old, and in no time he had full control of the teachers and the playground.

Instead, I want to tell you about what B has been doing over the past few weeks.

Two weeks ago, my older son’s tics spiraled out of control. For six hours one day, Origami suffered a steady attack of violent, major tics that followed one after another in five to thirty-second intervals. O could not stand; he writhed, screaming in pain, unable to control his body. B and I took turns holding O down so he would not injure himself. While B held his brother, I scrambled to find help.

While I held O, Bilbo found O’s favorite stuffed animals, his pillow, and his blanket, and brought them to us. Then B rolled up another blanket and fashioned a cushion for his brother’s neck, to minimize the impact and bruising from neck tics. B grabbed another pillow and some spools of wire, threw the pillow on his brother’s stomach, and laid himself across O’s midsection. Then the boys worked quietly on wire sculptures while Bilbo talked to O to distract him from his pain and ticcing. I began to feel as if my help was not really needed.

Bilbo just turned ten. Origami’s issues have had a big impact on B as well as on the rest of the family. We try to protect B and give him his own space and his own share of attention. We take Bilbo to support groups for siblings of children with TS. But while B is a remarkably resilient person, the effects of living with a sibling who has special needs are evident.

B rarely invites friends over for playdates, waiting for times when O will be out. For years, B has defended his brother against teasing and ridicule. Although we have not expected B to help care for his brother, B has assumed that role himself. As O’s tics worsen, B is always watching for situations that might trigger violent tics: B takes his brother’s hand at the mall when he sees O trembling before a tic. At tae kwon do, B runs over to pick O up off the floor after every major tic.

And so it goes. Last week when the boys and I went for our daily run, I had to talk B out of trying to run with his arm around his brother. I assured B that I was capable of helping O, too, and that if they tried to run while so intertwined, odds were that both of them would end up falling. At home, whenever O tics B drops what he is doing and runs to help his brother. People who see Bilbo supporting his brother are impressed by B’s maturity and thoughtfulness. I am proud of B, too, but I also see signs of stress and strain in someone who really should not have to be dealing with these issues. B needs time and space to be his own person, not his brother’s caregiver.

So, Sunday was a very important day; it was the first day of the spring soccer season. Soccer is the one activity Bilbo has that is all his. B has been with most of his teammates for nearly three years; they give B his own little slice of “normal” life. Soccer is the most important part of Bilbo’s schedule. He needs and craves the time to run around, yell, sweat, and just be a boy.

Structure More Effective In High School Science Classes, Study Reveals

ScienceDaily (2009-03-28) -- Self-led, self-structured inquiry may be the best method to train scientists at the college level and beyond, but it's not the ideal way for all high school students to prepare for college science. That's according to findings of a new study. ... read full article

Thanks to Judi for the heads-up.

Random noise generators unite!

A young woman describes her experience with TS. I pause to think about how much energy I have put into not making random animal and computer noises over the years....

Current methods for managing TS

Courtesy of www.tourettesyndrome.net, two recent articles on medical management of TS.

http://www.movementdisorders.org/monthly_edition/2009/02/md_article.pdf

-- very interesting and potentially useful article, especially since my son currently has many dystonic tics.

Psychopharmacology of Tic Disorders

Botox and marijuana, together again!

A handy summary of alternative treatments for TS addresses marijuana, Botox, deep brain stimulation, and more.

The herbal remedy

The Washington Post looks at medical marijuana laws in California.

Not just for wrinkles anymore

An article in today's New York Times discusses the ever-expanding number of off-label uses for Botox. The quote that ought to capture someone's attention: "Botox is so widely adopted in medicine — and ingrained in popular culture — that some doctors don’t think that novel uses are experiments."

In you were wondering why I posted this here: Botox also is being tried as a treatment for Tourette Syndrome.

Know your meds, part one

Risperdal

FDA warning letter about Risperdal

Last November's story in the New York Times about ties between a research center at Massachusetts General Hospital and Johnson & Johnson. -- And the original post about this story on my blog.

Drugs.com Risperdal page and Medicinenet page. Note that extrapyramidal side-effects are most common. Extrapyramidal effects include tardive dyskinesia and parkinsonism. In other words, the most common side-effects from a drug that often is used to treat Tourette Syndrome are spasms, tremors and jerky movements.

Michael J. Fox on "The Daily Show"

Watch the interview here.

New research on bipolar disorder

Doctors study bipolar disorder in infants. (Thanks to Aimee for the heads-up!) A fascinating discussion of this research can be found here.

"The Hawthorne Effect"

The author of Slate's "medical examiner" column discusses alternative therapies for autism, why he believes none of them work, and why he believes parents continue to swear by them. The article is interesting -- and less caustic than one might expect. I believe the author does miss one key point, though. I think it is entirely possible that parents continue to cling to treatments that are dismissed by the scientific community because they need to know that they are doing something that is helping their children. Nobody wants to give up hope.

Dis/comfort

For reasons I cannot easily explain, I have long enjoyed reading the Miss Manners column. While I do not remember her explanations of how to eat, say, snails, one of Miss Manners's responses has stuck in my mind for a number of years.

In this letter, the writer asks Miss Manners how she can convince her sister-in-law, who lost one of her legs, to stop wearing shorts and bathing suits to family barbecues and pool parties. The writer complains that her sister-in-law's stump makes other family members uncomfortable, but the sister-in-law refuses to cover up. In response, Miss Manners suggests that the letter-writer might try looking her sister-in-law in the eye when speaking to her, instead of focusing on her missing leg.

Recently, I find myself thinking about this letter a lot. My son's tics have been severe for several months. We have explained his tics and Tourette's to other people (adults and children) at art class and at tae kwon do. The reaction has been overwhelmingly supportive and positive, even though my son's major tics are painful and sometimes alarming to behold. Some children help O when he has a major tic, other children continue with their work, unaffected. Nobody is complaining about O's tics or shunning him because of the strange things his body insists on doing.

Adults sometimes have a different response than children do, though. Before we explained what was happening, some adults laughed at O's tics. Others are visibly disturbed by them -- whether this is due to concern or personal discomfort is anyone's guess. Some people, including people who have not met O, people who merely hear that he has Tourette's, seem to feel that O should not cause other people discomfort by mingling with them while he is ticcing. If O is not able to control his tics, they say, he should not come to a particular event or participate in some activity, because it is important that everyone who is at said event or activity feels "comfortable."

What does this mean? What is "comfortable," and how is it being measured? What about the comfort of the person who is being excluded because of something he cannot control? In my opinion -- not that anyone asked -- "we want everyone to feel comfortable" is a fuzzy, ill-defined, arbitrary, difficult-to-enforce notion. It is the lamest of lame excuses, and it sounds a lot like "this scares me, and I am going to use my own fear and ignorance as an excuse." To those people, I would say, quit focusing on my child's tics, and learn to look him in the eye.

Two years and out?

A story in today's Washington Post questions the long-term benefits of ADHD drugs and asks if researchers downplayed the medications' side-effects and the absence of long-term benefits from their use. Noteworthy: the medications' tendency to stunt growth, and the apparent loss of any benefit from these medications after 24 months.

Medical board reaches decision on accused pediatrician

Dr. Melvin Levine, pediatrician and author of A Mind at a Time, has agreed to never again practice medicine following a series of complaints and accusations that he molested patients. He will be allowed to continue to write and lecture.

It's a really big hill, revisited

A while back -- two years ago, now that I think about it, I wrote a post called "It's a Really Big Hill." I was thinking about how people do not grasp what Origami is all about until they have had a one-on-one interaction with him. Here is an excerpt from what I wrote:

In general, it does not take anyone very long to notice that O is "different," but very few people are able to grasp that we are dealing with another degree of "different."

When I tell people that we bought a house with a huge sledding hill in the back yard, they will nod and say something like "Oh, yes, our kids like to sled in the back yard, too." "No, really," I will respond, "You can ski down this thing, it is huge." "Oh yes, we know what you mean," they say. Then they come to our house. "Whoa! That hill is huge!! I had no idea you meant it was that big! How on earth do you mow it?" Seeing is believing, I suppose.

In the same way, we talk to people who will say, "Oh, yes, O seems smart, but don't they have programs for that in school? How far ahead could he be?" Well. There is no good way to quantify Origami's needs without coming across as a jackass, so in general we do not even try. The short answer, though, is: pretty darn far ahead. The longer answer might be more along the lines of, "Well, why don't you come on over and try to mow our back yard?"

I found myself thinking about this again recently, as I did sprints up the hill as part of my speedwork. I guess that oxygen deprivation shook something loose in my brain.

My son's tics have worsened dramatically in the last several months; this is to be expected at his age, but expecting the tics to get worse has not made them easier to handle. No parent wants to see his or her child in pain; it should be obvious to any observer that my son's tics cause him a great deal of pain.

I have written about how severe Origami's tics are. I have talked to friends and relatives about how severe Origami's tics are. Everyone has been wonderfully sympathetic and supportive. But I really do not think anyone understood just what I meant by "severe" until I shared video of O's tics. The extreme always makes an impression -- or is that, seeing is believing?

Let me put it this way: When Origami saw what his major tics look like, he was upset. He deals with the pain and the anxiety all the time, but he had no idea what the rest of the world sees when he tics.

I am not going to share video of Origami's tics on a public blog. Instead, I will share a photo of O enjoying the first snow of the season in our back yard. It's a really big hill, trust me -- or see for yourself.

Is Provigil addictive?

A new paper in JAMA discusses the potential for abuse of modafinil (Provigil).

"What's a smart guy like me doing in a bar like this?"

An article I stumbled across on Yahoo proves to be less asinine than I feared. In brief: an author/"expert" apparently declared that the higher one's IQ is, the more difficult it is to date. The author of the piece I linked to above politely calls bullshit on this theory.

That's about it, really; this is not an article of substance. The topic could spark quite a debate, though. I am sure that I know people who would side with the author/expert/hypnotherapist, and I am equally sure that I know people who would claim there is no correlation between dating failure and IQ. I personally think it might be a matter of social skills or "emotional intelligence" more than IQ score.

Deep Brain Stimulation to treat OCD?

Medtronic's Reclaim receives FDA approval for use in treatment of OCD where drugs and therapy do not work. Deep Brain Stimulation has been used in the past to treat movement disorders, but this is the first time it has been approved for treatment of a psychiatric disorder.

Missouri legislature considers mandatory insurance coverage for autism

http://news.yahoo.com/s/ap/20090305/ap_on_re_us/autism_coverage

I am having a difficult time understanding how someone could be opposed to this.

apologies

My apologies to those of you who pop in here, looking for new posts. As winter drags on, so do I. I will try to post new and exciting tidbits soon....

autism and vaccines

A special court rejects autism vaccine theories.

Then he learned Icelandic in a week...

Interesting interview in New Scientist with Daniel Tammet, who holds a record for reciting digits of pi.

www.newscientist.com/article/mg20126881.800-inside-the-mind-of-an-autistic-savant.html?full=true

He's written a book. "The thinking of savants is an extreme form of the kind that everyone has. The aim of my book is to show that minds that function differently, such as mine, are not so strange, and that anyone can learn from them."

Get out and play

Recess Makes for Better Students

ADHD meds and hallucinations

http://news.yahoo.com/s/nm/20090126/hl_nm/us_adhd_drugs

An FDA study suggests that the adverse effects of ADHD medications include hallucinations. One interesting point is that these side-effects were noted in Strattera and Provigil as well as in standard stimulant ADHD medications. Also noteworthy is the comment that Provigil was not approved as an ADHD treatment in children.

At the same time, some of the described adverse effects, such as incessant talking, sound like standard ADHD behavior to me.

Meet the new drugs, same as the old drugs?

An article published in this week's New England Journal of Medicine reports that newer antipsychotic medications have the same risk of sudden cardiac death as older antipsychotic medications. These medications commonly are used to treat Tourette Syndrome.

Video program teaches autistic children about emotions

The Transporters, courtesy of Professor Simon Baron-Cohen, makes its U.S. debut this week.

Small blessings

My older son, Origami, had tae kwon do last night. There is nothing unusual about that -- O goes to tae kwon do five or six days per week. Tae kwon do is his second home -- something we did not fully appreciate until O returned to class last Friday after having the flu for an entire week; O walked into the dojang, sat down, removed his shoes, breathed a sigh of relief, smiled, and exclaimed "much better!"



Unfortunately, for reasons we do not fully understand, O's tics now are at their worst during tae kwon do. Master K is teaching O to use breathing control to overcome his tics. Given that O already has gone from having over 100 major tics in class to having ten or fewer, I have to say that breathing control is doing something.



Origami and I have provided some of the classes brief explanations of what is happening. Most of the children and teens in the classes have either asked O a question or two about TS, or they have shrugged and accepted that this is just part of how Origami is. Some of the adults in class find O's tics amusing, which puzzles me. In the "flipping" tic, Origami's arms are trying to wrench themselves out of their sockets; the pain inherent in this tic should be obvious to any adult.



O's major tics, when they are especially severe, are unnerving for some of the other children. I can understand this. Imagine being ten or eleven years old and watching someone else your size being flung to the ground, squealing in pain, by some invisible force several dozen times during a class. I think that would alarm most kids. Two weeks ago, I watched one boy's eyes grow large like saucers even though we had explained what was happening. He ran out of class to tell his father "Dad, that boy can't control his body. That's why he keeps doing that!"



I wondered how this boy would act around O during future classes. In the past, we have encountered people who turn and flee upon learning that O has Tourette's, making little effort to conceal their terror. There have been plenty of children who just assumed that O must be contagious, and treated him like a leper. This time, did we manage to make our message clear?



So, there we were last night at tae kwon do. It was a fairly large class, with several new adults who did not hear our TS mini-lecture. O is relaxed during small classes, but the larger a class is, the more he tics. The class lined up for kicks and blocks, and O flipped to the ground. Then it was time for forms, and O flipped to the ground at the beginning of nearly every form. After forms, Master K taught the class some self-defense and hap ki do moves. O was paired with the saucer-eyed boy; how would this pairing go?



I was most relieved to see that everything was -- absolutely normal. The other boy forgot his own strength and flipped O, who is lighter than ever after being sick, onto the mat. O got up and patiently explained the moves to the other boy. They practiced for a while, then devolved a bit into pretending and slow-motion fighting, and fits of giggles. There was some serious work, some goofiness, and no major tics. They looked like two normal boys doing normal boy things -- which is our goal, I think.

Late bloomers

-- A very interesting essay by Malcolm Gladwell in the October 20, 2008, issue of The New Yorker.

Pre-natal screening for autism?

If we screen out autism we run the risk of losing genius, too

From the article: "To bring up one autistic child is a challenge to the sanity of an entire family. To bring up two might destroy it." On the other hand, professor Simon Baron-Cohen cites the number of autistic males who are highly skilled in mathematics and the sciences as an argument against prenatal screening.

The author asks, "Who is to judge where lies the dividing line between madness and norm?" This is a good question. I would add, why is there such pressure to conform to the norm? Instead of eliminating those who are different, why not offer acceptance and support, instead?

Given to Fly

“I am alive. I am free. I am flying with the wind. I am me." – Against Medical Advice, by James Patterson and Hal Friedman

Like my son, Cory Friedman wants to fly. Cory seeks the sensation of flight on jet skis and dirt bikes. My son builds rockets and airplanes and watches birds, and dreams of taking flight with them. Cory and my son have something else in common. They both have Tourette Syndrome (TS).

By unhappy coincidence, I read Against Medical Advice, in which James Patterson and Hal Friedman (Cory’s father) tell Cory’s story, on a day when my own son was experiencing his worst bout of severe tics to date. I read with one eye on the book and my other on my son, who was flipping and jerking and throwing himself on the ground with such violence that he looked, for all intents and purposes, like a rag doll being hurled by an angry, invisible giant. As I read Against Medical Advice, I experienced the relief of encountering someone who really understands what life with TS is like, as well as the pain of recalling our past struggles. The book also renewed my resolve to stay the course and continue to manage our son’s challenges as we have over the past year.

Cory and his parents spent years trying to understand Cory’s behavior and how best to manage it. They traveled far and wide to try new drugs, more drugs, various therapies, different experts. School was a struggle, home life was stressful. Cory’s compulsions caused all kinds of large and small difficulties. His mother abandoned her career to manage his care, record his ups and downs, and navigate the public-school minefield. Some treatments seemed to work – for a while. Other alternatives were unmitigated disasters from the beginning. This is how it is with TS. Symptoms wax and wane, like phases of the moon, only with no regularity. When a patient goes to the doctor in despair and tries a new drug, and it seems to work, there is no way to determine if the drug actually is helping the patient, or if the patient has merely entered a waning phase. After a while – perhaps a few weeks, perhaps a few months – the drug no longer seems to help. Has the drug lost its efficacy, or was it never effective in the first place? Should the drug be discontinued, or should the patient try a higher dose – or add another drug?

Against Medical Advice can be painful to read; every time the reader thinks Cory has hit bottom, every time Cory thinks life cannot get any worse, it does. Eventually, after many years, Cory stops taking the massive amounts of medication he has been on for so long, and finds the strength within himself to face his TS and manage his symptoms and his behavior. Have I spoiled the book by telling you that? No – this book really is about the journey more than it is about the destination.

I must admit that certain aspects of this book made me uncomfortable, in more than just a “been there, done that” way. Having already put myself in Cory’s parents’ shoes, and having walked far in those shoes in real life, I found that a number of situations described in the book left me thinking “There is no way I would let my child get into that situation/ get away with that behavior!” Now, this is a delicate subject for me, and I hesitate to mention it, and do not want to criticize the Friedmans’ parenting. I know how hard it is to parent a child with TS. I know the stress, and I know what it is like to feel as if others are watching you and judging you and your child based on behaviors they do not and cannot understand. Given that, I feel it would be petty of me to question the Friedmans’ decisions. It is enough to say that our situations, while similar, are different, and there is no “one size fits all” approach to handling these children. I appreciate the Friedmans’ decision to speak up and share a difficult story. I hope that their effort helps to raise awareness about TS.

Against Medical Advice, is a quick, dare I say easy, read. That is to say, I read the entire book in about ninety minutes; Cory’s story, however, is harrowing. Names and certain details have been changed to protect the innocent, or perhaps merely to avoid legal difficulties. I am sure I am not the only parent of a child with TS who read this book and is trying to determine who is who. One particular episode sent me running to the computer in an effort to determine the real identity of “Dr. Holmes,” in the hope that we might safely avoid that doctor in the future. (I think I was successful!) I would have liked the book to have more details about what did work and what were the positive elements in Cory’s life along the way. Additional information about the impact of Cory’s issues on his mother also would have been appropriate. We are told that she gave up her career, and that she was “an angel,” but we are given few glimpses into her reactions, into how she felt, how she coped for so many years. Cory’s father offers the reader his epilogue; Cory’s mother should have had her say, too.

***************************************

About my title for this piece: “Given to Fly” is a song by Pearl Jam, a personal favorite as well as a very appropriate choice here. Obviously, I cannot speak for Cory, but I suspect my son's fascination with flying stems from a desire to overcome his frustration with a body that has let him down so often, for so long. He sees flying as a way to feel free.

A wave came crashing like a fist to the jaw
Delivered him wings,
"Hey, look at me now"
Arms wide open with the sea as his floor
Oh, power, oh
He's... flying
Whole
High... wide, oh

-- E. Vedder