Monday, January 26, 2009
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.
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.
Thursday, January 15, 2009
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.
Tuesday, January 13, 2009
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.
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.
Monday, January 12, 2009
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?
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?
Saturday, January 3, 2009
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
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
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