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 An archived version of Dr.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/