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Outgrowing the Child Neurologist: Transition in Tourette Syndrome

Presented by Lawrence W. Brown, MD##

Adulthood may come naturally, but it takes years of preparation. There are many challenges and barriers facing adolescents with any neuropsychiatric disorder. But there are also practical solutions that can lead to optimal success for youth with Tourette syndrome.

Lawrence W. Brown, MD is Associate Professor of Neurology and Pediatrics at the Children’s Hospital of Philadelphia (CHOP) and the Perelman School of Medicine of the University of Pennsylvania. Dr. Brown is a past president of the Child Neurology Foundation, and he currently serves as chairman of its Transitions Project Advisory Committee (TPAC). This effort is defining the goals of successful transition for youth with neurologic disorders; he is the senior author on its first publication entitled “The neurologist’s role in supporting transition to adult health care: a consensus statement” which was published in Neurology with endorsements by the American Academy of Neurology, American Academy of Pediatrics and the Child Neurology Society in addition to the Child Neurology Society. Locally he is a co-principal investigator of an epilepsy education and transition project funded by the Health Resources Services Administration (HRSA) in collaboration with the American Academy of Pediatrics.

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1:57

Lawrence W Brown, MD, is Associate Professor of Neurology and Pediatrics at the Children’s Hospital of Philadelphia, Chop and the Perelman School of Medicine at the University of Pennsylvania.

2:09

Doctor Brown is a past president of the Child Neurology Foundation, and he currently serves as Chairman of his transitions Project Advisory Committee.

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This effort is defining the goals of successful transition for youth with neurologic disorders.

2:23

He is the senior author on its first publication entitled, The Neurologist Role in Supporting Transition to Adult Health Care Consensus Statement, which was published in Neurology endorsements by the American Academy of Neurology, American Academy of Pediatrics, and the Child Neurology Society, in addition to the child neurology Society.

2:44

Locally, he is a caucus, co-principal investigator of an Epsilon Epilepsy Education and Transition Project, funded by the Health Resources Services Administration and Collaboration at the American Academy of Pediatrics.

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Doctor Brown is director of the Pediatric neuropsychiatric Program, a multi-disciplinary clinic for children with Tourette syndrome, high functioning autism, complex ADHD and genetic disorders, or complex learning and behavioral issues. Have a neuro biological basis, Is a principal investigator of a genetic study funded by the National Institutes of Health, as part of an international consortium, to develop a worldwide databank of individuals with Tourette’s syndrome.

3:27

Doctor Brown is also a senior clinician in Chops Pediatric Regional Epilepsy Program for any continues to be principal investigator on numerous clinical trials in pediatric epilepsy. In addition, is a senior clinician in a Sleep Disorder Center, with a major interest in how sleep and its disorders interact in children, less neurological and developmental disorders.

3:49

Doctor Brown is an active member of the Child Neurology Society, the American Epilepsy Society, the Academy of Pediatrics, or I serve two terms as chairman of the section of neurology and the American Academy of Neurology.

4:04

I could go on as doctor Brown has many, many accomplishments, But I think I will stop there so that doctor Brian can begin his presentation. Doctor Brown. Thank you for being with us tonight.

4:16

Thank you, and thank you for that lovely introduction.

4:23

There have been a few changes since, because I’m currently on sabbatical, but all of the rest more or less.

4:34

So, can you see my slides right now?

4:40

Yes, we can.

4:42

Great.

4:50

So, let me get started, but before I do, I’d like to take A moment.

4:57

And recognize faith, rice.

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Faith is an old friend.

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And, we worked together from the beginning of NJ CTS and it has been a wonderful ride together.

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As she just went into retirement and come June, I will join her, not directly, but we will be on the same page.

5:29

And I think we can all thank Kurt for the many years of energy and effort and success and growth that represents N J C T S.

5:46

So let me describe what I’d like to do in the coming minutes.

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First to review just a few things about Tourette syndrome so that we’re all on the same page.

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go through general transition and what it means and why it’s so much more difficult for those with T S.

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And then end with some of the barriers but also some of the solutions that can improve what happens as a child becomes an adult.

6:31

So let’s get started with what we do know right now.

6:37

Uh, and, uh, I’d like to just remind everybody what’s happened with the latest iteration of the DSM which’s DSM five.

6:52

It hasn’t changed very much, but there are a few minor differences.

6:58

Um, it’s defined by multiple motor techs, and at least one vocal mannerisms at some point.

7:11

They have to be different, as I say, but it doesn’t have to be daily. It has can be intermittent as long as it’s at least one new year.

7:23

In the past, one had to have no tik free period for more than three months.

7:31

That is now gone.

7:34

It remains a pediatric onset disorder and as we’ll learn, it’s often a pediatric resolution disorder.

7:45

But, if some buddy begins having tics as an adult, one really has to look for a different mechanism.

7:58

In the past, Tourette syndrome was less, often, less common, less prevalent.

8:09

And, that was because the definition required, that it produced significant distress, or some difficulty in daily activity, and function of, whether it be in school socially or the job.

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Again, that is now gone.

8:31

Um, and, of course, in medicine, there are always other things that can look alike.

8:40

And so, it can be caused by substance abuse, can be caused by stimulants.

8:52

Which it isn’t, but that’s another story we’ll get to and it can’t be caused by some other medical condition.

9:02

So even the latest DSM definition, if you just heard, what I said is limited to the ticks and doesn’t include any of the other conditions that often are at least as uh, difficult for the patient and the family.

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So, the best estimate of prevalence for, what we now call Tourette the Chronic Motor Tik Disorder, is somewhere between zero point one and 1%.

9:41

Uh, one and a thousand uh, includes the ones with impairment but the upper limit, the 1%, 1 and 100, includes all cases of multiple motor verbal tics.

10:03

Now, remember that the occasional, isolated tick occurs in one out of four to one out of five children.

10:15

This was observed by sending research associates into, elementary is two classrooms, and, as I say, one out of every 4 to 5 kids had at least one tick on one occasion, in the course of the school year.

10:38

Um, another thing that people say probably no, but it’s worth mentioning, is that ticks seem to go downward.

10:50

They start often in the eyes, the nose, the mouth, and they progress downward.

10:58

They also progress from the simple to the more complex, and the difference between that is the complex can be interpreted as as something meaningful, even if it isn’t.

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And the way that shows up is if you ask somebody who was turning their head, you say, Why are you doing that?

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And they say, well, I’m just looking around, even if that’s not really what’s happening, it’s a good story.

11:33

Um, even in 20 21, why we have ticks is not completely understood.

11:41

Many people who have ticks do have a family history, but not everybody.

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And from the Tech Genetics Study that Barbara mentioned, which is also, by the way, very involved within J CTS, the latest data suggests that new mutations, not not the cause problems other than the tick’s.

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but new mutations that we can identify with the latest generation technology can be found in at least 25% of those people.

12:30

I think everybody recognizes that ticks are more common males.

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And in families, where Tourette syndrome occurs, OCD is more common in the female’s.

12:48

Uh, why do people outgrow ticks?

12:53

We think that it’s the maturation of the areas in the brain and the circuits that go through that area, the basal ganglia, that are completing their maturation at about the onset of puberty that explains the tendency for ticks to get better at that time.

13:23

But I’d like to go back to the definition that says texture defined Tourette syndrome is defined by the ticks, and not by the other conditions.

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But there was a very large international study that suggested that over 90% of people who have ticks also have ADHD or OCD or mood disorders, anxiety, as well as other neuropsychiatric issues. And these can be even more difficult and more disabling and last longer than the ticks.

14:09

So for a little, I’d like to talk about some of the comorbidities.

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An ADHD is the most common. It accounts for about 60%.

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It often precedes the ticks by several years.

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Ticks often start 7 or 8 years of age. Onset of ADHD is typically 4 to 6 years of age.

14:37

And you remember these are all general numbers and do not necessarily reflect the individual, but this is the most common.

14:48

Um and although when I gave you the definition from DSM it says it shouldn’t be caused by stimulants.

14:59

I’m absolutely convinced that while stimulants can make tix worse can bring them out in people who are prone to ticks but haven’t had them yet.

15:13

It only occurs if you’re pre-disposed and it doesn’t cause tics and when you take the stimulants away the tick’s get better.

15:23

Um, ticks are unlikely to get worse with the stimulants.

15:27

Actually, um, only about 10% get worse and the problem is, as everyone knows, ticks, wax and wane.

15:42

And so, therefore, if you have waxing and waning of tics and you start somebody on stimulants, they may or may not coincide with the waxing.

15:58

Why do I even bring this up?

16:01

And that’s because when ADHD coexists, with Tourette syndrome, it’s the ADHD that predicts academic difficulties, even after you factor out learning disability and how severe the ticks are.

16:23

And remember, you don’t have to have tic disorders.

16:28

If you have untreated, poorly treated ADHD, that itself contributes to everything down the road from an increase in car accidents to more smoking, drug use, and challenges with jobs and this relationships.

16:56

Hmm.

16:58

Kosi D is the second most common with Tourette’s Syndrome.

17:05

If you just look at any ritualistic mannerism, it occurs in at least half of people with Tourette.

17:15

It can actually be very difficult to distinguish from the repetitive tick, but 20 to 30% will meet the full DSM criteria for obsessive compulsive disorder.

17:29

The typical age of onset is a little bit older, 7 to 9, um, remember that repetitive or ritualistic behavior can be age appropriate.

17:43

Every four year old gets into everything, has to be power rangers, or whatever the latest fad is.

17:55

And some children are just shy, anxious, timid and don’t like change.

18:02

But uh, OCD is the problem with Tourette syndrome and it can be hard to tell not only from the Tick’s but with anxiety, depression, school difficulties and just daily life.

18:22

Um when we talk about OCD requires excessive time it requires that there be distress and that it interfere with daily activities.

18:36

Another fact, which I forgot to mention was that, um, for people who have OCD with Tourette typically, they need to repeat things until it feels right When there’s OCD without Tourette.

18:56

It typically is because if they don’t do it, something bad might happen. And so there’s a difference in the meaning there.

19:11

Those are not the only two major conditions.

19:14

Anxiety is more common in people with Tourette syndrome.

19:21

There are a lot of different kinds of anxiety which you probably know or doubt.

19:30

Separation, anxiety, social, anxiety, we’ve seen a number of kids with selective mutism who can talk only at home, or with a select group of close people to them but not in public school, there are phobias panic disorder.

19:55

What I’d like to remember remind people is that when there’s anxiety, ticks get worse.

20:05

And when ticks get worse, they often become more anxious.

20:11

So there is a feedback loop in both directions.

20:18

Whatever, when there is anxiety involved, the quality of life is impaired.

20:31

I’d also like to mention, unfortunately, that mood disorders are more common with Tourette’s syndrome, Um, and that it’s often associated when ticks are worse and there is functional impairment.

20:53

Having depression, which is frequent, more frequent in adolescence, uh, actually predicts psychiatric hospitalization.

21:07

Quality of life is lower And, uh, if ticks don’t go away which they do in two thirds, it is a an increased risk factor for suicidal thought and action.

21:28

And the last thing I’d like to bring up before we move to the real topic for tonight is rage reaction which is defined as uh, being upset out of proportion to any inciting event and a typical of the baseline personality.

21:51

It is seen in 20 to 40% of youth, particularly teenagers with Tourette and more commonly when there is OCD and anxiety, it’s been reported over and over as one of the most distressing and disabling symptoms, Uh, especially reported by parents and families, it increases the dysfunction, the social conflict.

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And the rage reaction is the leading cause for psychiatric hospitalization in children and teenagers.

22:36

So, before I move on, I just want to summarize, and remind people that.

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My opinion is that Tourette syndrome is a disorder that can be managed.

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It’s not a disease that you can, or necessarily, want to, blow out of the water and eradicate completely.

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What we aim to do is to reduce the ticks and the comorbidities to the point where people can function and learn how to live, with what they have.

23:16

In general, people should not fear that the ticks will take over their lives.

23:23

Even when it’s getting worse, they rarely cause major functional impairment or significant injury.

23:31

They can, but they typically don’t.

23:35

So I say that understanding Tourette syndrome is always imperative, but treating it is not always indicated.

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And when we treat, the treatments are symptomatic not curative.

23:53

So when we make risk assessment, balance, we have to think about that when we have intervention that we feel is indicated in general where we’ve come to the consensus that cognitive behavior therapy ought to be considered as a first line.

24:18

Especially for mild to monitor moderate tix assuming that the child is mature enough and willing enough and treatment is accessible.

24:30

For severe ticks and weir, uh, psychological approaches are not available.

24:40

We do have, I believe, safe and effective drugs, FDA approved drugs, as well as off label, which we can use.

24:53

And when we use it, preferably, it should be in conjunction with the psychological approach.

25:01

Yeah.

25:03

For those parents who are listening, I’d like to remind them that when a child has Tourette syndrome, parents should try to develop a team, that it’s comprehensive, and addresses all the needs, and a team that can speak among themselves, as well as with the family and the patient.

25:34

So you need primary care and a specialist, although I’m talking about outgrowing, the neurologist’s, there are some people who see their pediatrician, and there are others who see a psychiatrist and it’s all the same.

25:51

Behavioral health might be indicated, educational support with an IEP or 504 plan might be indicated, and when they’re there, everybody really needs to be on the same page.

26:08

Um, the person who really needs to be on that page is the child.

26:14

Especially as he gets into puberty, they need to understand, they need to participate, and they need to quote, own the plan.

26:27

Uh, it’s not the parents problem. It’s not the doctor’s problem. It’s the patient’s problem.

26:36

And lastly, I always think that it’s so important to be optimistic that we, as doctors, tend to see people when things are getting worse.

26:49

But we know that if we waded out, they often get better.

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And that the natural history shown over and over again, is that most people improve over time, especially by mid adolescence.

27:06

And even if it doesn’t, a positive attitude definitely minimizes the impact on life.

27:18

Finally, we can now move on to transition.

27:24

What do we mean? We’ve just had a political transition.

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I told you about faith and my transition, but this is medical And transition is the process that starts early and isn’t over until, uh, early adulthood.

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That prepares the patient, their parents, their caregivers.

27:59

So it’s a process, not a moment in time.

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The moment of time that people often call transition is actually transfer the hand off when you leave the pediatrician and graduate and move on to the internist or the adult specialist.

28:23

And it can look different for every patient.

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And it will depend upon the medical complexity.

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And, in particular, we’ve learned that the biggest challenges, if are, if there are intellectual or physical disabilities, that, uh, M, that means that it’s unlikely to be able to be fully independent as an adult.

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But the goal of medical transition is to help those youth to take responsibility for the management of their own disorder and to become as independent as possible.

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As their intellectual and physical disabilities would allow.

29:16

And to avoid the cliff, I call it the cliff, because once the youth leaves for college, once they graduate from special ed, and you can’t go back and rieff, gain those years of progress, and the resources that are available, and, uh, are no longer after they become adult.

29:55

So, why are we focusing on transition at this point?

29:59

Well, obviously, growing up is inevitable, uh, and, uh, we all want it.

30:11

Wow.

30:12

Children and teenagers to be independent, um, and why do we need to move on?

30:22

And that is that even those with neurological and particularly neuropsychiatric disorders, it doesn’t mean that they don’t have general medical conditions that are better treated by adult doctors.

30:40

Whether it be wait, or blood pressure, or diabetes, or whatever, pediatricians don’t do as well with those medical conditions.

30:57

And if you don’t do it early, it just doesn’t happen. And as the expression goes, we just took the can down the road.

31:10

But I do want to remind people that transition is now a buzz word. And it’s been accepted as important. And it’s part of how we practice.

31:29

But it’s not easy.

31:31

And I just want you to know that as a neurologist, caring, I know that caring for any child with T S can seem like going through a long tunnel, and you don’t know what’s on the other side.

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But I really, after, for over 40 years of practice, wanted to tell you that there really is daylight at the end of the tunnel.

32:00

For all these people, um, we find it just as difficult.

32:08

two, encourage people to move on, as you do, because we’ve been working with you for many years, we’re bonded, we feel like part of the family.

32:26

But also we understand that there are big differences between what I call the pediatric comprehensive approach, which is so collaborative and reaches out to the school, reaches out in all ways possible.

32:45

And a more narrow, focused, and patient oriented approach.

32:50

that is the adult setting.

32:57

And I have to be honest, because most of the patients, with Tourette syndrome, in childhood, are followed by neurologist.

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Um, there are very few adult practitioners.

33:14

two are comfortable and interested in these complex, behaviorally challenged patients.

33:25

And while this is not true for the majority of people with T S, if they have financial issues with limited insurance or intellectual disability, it’s even worse with some of the other disorders that we care for.

33:45

So I’ve been working on transition running the program for neurology nationally for the last 10 years.

33:55

And without going into great detail, this is what we’ve come up with.

34:03

Not only did we come up with it, because we based it on what general pediatricians and family practitioners taught us for primary care.

34:17

but that it was necessary to actually begin the process long, long before it’s ever over, and even before people are ready to think about it by age 12 to 14.

34:34

That’s an age at which kids are capable of understanding are beginning to have adolescent growth, and the issues are such that they can begin to process self management skills and have increasing risks of behavior that we can address.

35:05

They’re constantly growing.

35:07

I used to say, It’s like corn, and you can put your ear to that kid. I didn’t hear him grow overnight.

35:17

So, it needs to be re-assessed at least every year and remember that what’s appropriate may change over time, as we need to talk about driving, or sexual behavior or drinking, or sleep.

35:41

And if it’s unfortunate and you need to have the discussion because of that, what used to be called mental retardation, intellectual disability, or severe physical disability, then trying to prepare for that legally is essential because if you don’t do it before a chain, it’s even harder.

36:13

Um, if that isn’t enough, it takes time, uh, to match up with an adult provider.

36:22

And so we ask for identifying that person at least a year before we complete transition.

36:36

And that the transfer itself, is only the last step, and it’s only after it’s successfully done, and there’s been at least one visit with the new person that we can say The transition is over, and we can fully graduate.

37:00

So, just to repeat it, it’s a long process, because adolescences, so challenging, and, uh, the dimension caused by to read in the comorbidities that I say is so common. makes it more difficult.

37:21

It really does take time to develop the knowledge of the disorder, the medication’s, safety, the emergency plans, all these self management skills, what you can do and what you need to avoid.

37:42

I hate it when I was telling Kelly the other day about a patient who came to me.

37:54

I thought I had done a good job, but called me up from college, saying that she knew he wasn’t supposed to drink while he was taking medication for the ticks.

38:11

But there was an important fraternity party coming up in a couple of weeks. So, how many days before the party should he stopped the medication, so we could drink? I mean, we really need to help people to make good decisions, and to understand the consequences of what happens when you don’t.

38:34

And it also takes time for parents and families to learn about what resources are available and how to access them.

38:49

While the child is doing well, hopefully.

38:54

With Tourette general transition issues, make it even more challenging.

39:03

As I said, Tix defined the disorder, but the comorbidities may be more disabling and last even longer.

39:13

Like ADHD and OCD, um, that, uh, all of these make adolescence in general more difficult and in fact, mood disorder, emotional lability, aggression, full rage reaction occur in virtually every youth at some point.

39:42

So we really need to be ready and prepared.

39:49

As I say, most teenagers will outgrow the ticks.

39:54

But that’s not necessarily true for the ADHD.

39:57

the OCD and the anxieties and even if it’s all out crone, or at least controlled, you can, You can wipe the stripes off the tiger, but they don’t always disappear.

40:18

In fact, they rarely do, entirely, and so, you have to consider, um, ongoing risk factors, which can lead to more challenges in college, or difficulty in maintaining relationships.

40:40

And raise the risk for smoking and other self medication.

40:48

Um, and finally, aye.

40:54

I’m afraid that it’s still true, that there are very few adult neurologist’s, who take care of Tourette syndrome, take care of ADHD or other behavior disorders.

41:10

And if these are ongoing issues, they often need to be followed, not by the child neurologist, but by adult primary care or psychiatry.

41:28

So if there are any practitioners in the audience, I would like to go back to some of the principles that we published and have been working on ever since.

41:44

And that is the importance of a, uh, clear transition policy, it’s not just the milk carton that should have an expiration date.

41:56

But people need to recognize that a child or pediatric office is for pediatric patients, and at some point they will outgrow it.

42:11

Um, we need to make sure that we can encourage the teenager to accept responsibility for him or herself, and to learn how to advocate for their own needs, That, remember, we need, as practitioners, to remind ourselves that you can’t do this just once, but you have to do it yearly.

42:44

To remember about the need for guardianship or power of attorney, where there are significant limitations.

42:55

So, always be sure that, or patients, that were managing the Tourette Syndrome, I have a pediatric or family practice or internist with them that they’re not using the emergency room for their primary care, especially important with complex patients.

43:24

And one thing that I’ve learned is that this model of treating children as children, growing with them during adolescence, and making sure that there, treat it as full adults, is important.

43:44

Whether or not they stay with A The same person throughout.

43:54

Uh, Philadelphia and New Jersey are very fortunate, in that we have lots of specialists, but in many smaller towns, in rural areas.

44:13

And where there is poverty, there aren’t as many.

44:21

And so, they may be seen by adult practitioners.

44:25

And if you are an adult practitioner, seeing children, you have to change how you treat the child and the family in order to achieve the goals of transition.

44:39

For the parents who are here, and I think, that’s the majority, you can support transition for Tourette.

44:48

You can support it by encouraging your kids to understand their condition, to identify what they should know about the disorder, What they should know about their medications.

45:08

What to do in an emergency, and how to seek medical attention, if it’s indicated.

45:16

Um, but equally important is to encourage healthy habits, sufficient sleep, making good choices in terms of avoiding things in regular use of medication.

45:33

Um, huh.

45:36

In addition, parents who were listening would do well to think of their role with their kid as transitioning with them that they don’t always have to speak for the child, but they can also be their ally and encourage them to speak up for themselves.

46:08

Parents need to remember that it’s the youth’s issue and it’s not about you, it’s about the child and they may not make the same choice you make.

46:24

And unless it’s worth fighting over, it’s probably worth giving them the space.

46:32

And I don’t know that I can say that it’s the same for everybody.

46:38

And what I wrote is, I believe true, that letting go will look different in every case, But letting go is definitely important. Now, I did say that there are barriers, and you’ve been listening. You could probably think of barriers.

46:58

So let me go through a few, but make sure that you understand that we’ve thought about this, and they all have potentially solutions.

47:09

So, for example, there’s often a lack of understanding between the pediatric family approach and the adult patient centered approach.

47:22

We know that teenagers are often unaware or deny that there are consequences.

47:32

And let’s admit it.

47:34

We’re, we often would be willing, I’m certainly, no, I can, to give up a part of my body to protect my kid.

47:46

I think that we have to try not to be over protective.

47:53

How can we improve things well?

47:57

We strongly recommend that, by the time of 12 to 14, you’ll be given the opportunity to speak to the doctor, at least for a couple of minutes, without the family in the room, to learn how to speak up for themselves, where necessary to provide training, to meet their psychological needs.

48:28

People who are on this call are very lucky because they already know about some of the local resources and then JCT S can help them to connect with others all of which should help to encourage the self independence and self advocacy.

48:53

Another barrier is that the teen’s tend to not follow the medical plan.

49:03

Uh, they are designed, teenagers’, truly, are designed, to be greater risk takers, and not understand the consequences.

49:18

And, all of this is impacted if they have mood anxiety or OCD.

49:28

Well, what can we do?

49:30

Well is, doctors, we ought to be screening for these extra challenges.

49:38

Um, we can give the, uh, use the opportunity to practice a brief summary of what they know about their condition and something that we’re just beginning to do, but I think we’ll be increasingly, uh, excepted, is to get the most important information down on an app for their cell phone or for those who are less tech savvy on a flash drive that give that information so that they can use it in refer to it.

50:27

Um, now, among the work that I’ve been doing has been through the Child Neurology Foundation, which I was president of for a number of years.

50:41

And we’ve put together a whole group of material that is open access, so anybody can use it.

50:53

It’s mostly designed for the practitioner, but it’s available for families to encourage their doctor.

51:04

There’s everything from an official transition policy to the, Track, the Transition Readiness Assessment questionnaire, which is accepted and validated, um, scientifically, that checks off, the information the child is, has achieved, is trying to learn or hasn’t even begun yet, so you can follow the progress.

51:47

There is a self care assessment that the youth fills out or the parents fill out if they’re limited, and then there’s the transfer packet that is so important and making sure that there’s full transparency from one practitioner to the other.

52:15

The medical summary I’d like people to recognize should include the diagnosis and etiology.

52:23

If there is one, um, current medications and labs, what’s been tried in the past, and why it’s been stopped.

52:36

Any other evaluations like neuropsychological, if there’s an emergency protocol, and then it should also include an assessment of what the youth knows and what their capacity is.

52:58

And all of this really needs to be completed at least a year, before they move on.

53:05

In addition to what we’ve been doing nationally, I’d just like to tell you that we’re trying to make it easy on everybody by incorporating it into the electronic medical record.

53:23

That, when somebody turns 12, 13, 14, a message pops up to remind them to the practitioner to bring it up, transition.

53:41

And when you bring it up, there are all sorts of resources that can be printed out and given to you, the parents, and the patient with the after visit summary.

54:00

And as I finish up, I want to put a little ad in for a project that I’m beginning, where we believe that we have a great idea to help, at the beginning of transition.

54:25

ages 10 to 14, middle school, fifth to eighth grade.

54:32

That is to use an online program, which is free.

54:39

To develop critical writing skills, which give the child an opportunity to think about.

54:48

There are personal challenges to share with other youth.

54:55

We will focus on increasing disease knowledge and self management skills and encourage expressing their feelings about living with Tourette.

55:09

And if that resonates with any of you, feel free to contact the people at NJ CTS.

55:21

Or connect with me at Brownell a chop dot E D U.

55:30

So, we can try to get you went in.

55:34

We think that this is going to really take wings and, uh, be useful for all kids with neurologic disorders, But we are starting with Tourette syndrome.

55:48

For those people who feel like they really need more information and I hope that’s everyone, feel free to go to WWW dot child neurology foundation dot org and look for transitions and then there’s a national resource that’s primarily for pediatrics and primary care.

56:14

But it’s wonderful, and we work closely with them.

56:18

And that’s WWW got transition dot org.

56:23

So, in summary, even though it seems like transition can be impossible, and, uh, it’s often explosive at times.

56:40

I want to remember that everybody deserves to graduate and become a full adult and benefit from all the effort we put in.

56:55

And let them be happy as an adult. And with that, I’ll stop.

57:01

and I’ll take any questions.

57:04

Kelly, do you want to take over?

57:08

I’ve got a doctor Brown. Thank you very much for that presentation. I know that it was very informative, and I’m sure people found it very helpful, as I think about the transition of their children. We do have a few questions. It is close to 8 30. We’ll ask a few, maybe, go a few minutes, past the 30, whatever questions, we don’t ask right now. Doctor Brown will, will answer in our blog. So, we have a couple of questions that are more related to transitions. And then we have some other, more broad questions. So let’s begin with more of a transition question.

57:49

How often should a neurologist see a teenager with T S that is already doing CBT, cognitive behavioral therapy, and is on medication with a psychiatrist, ha-ha, So that’s a really interesting question. And it could be taken in several ways.

58:09

I think that any body with a chronic condition should be seen at least 2 to 3 times a year, every 4 to 6 months.

58:25

Um, even if they’re doing well.

58:28

I find that when somebody’s doing well, it’s often much more interesting, deep discussion.

58:39

You can peel the onion and get to some of the issues.

58:45

Certainly, transition is it should not be.

58:49

The main focus was when there are acute challenges. It’s more for well-being when kids are doing well.

59:03

But the other point that’s brought up by this question is that there is no one general or specialty generals a practitioner or a specialist who quote owns Tourette syndrome.

59:24

It can be followed by pediatrics, can be followed by developmental pediatrics. It could be followed by neurology, It could be followed by psychiatry. When I’ve reviewed it, the majority are followed by site and neurology.

59:46

And only when it’s really complicated with comorbidities, are they followed by psychiatry.

59:53

But that’s not always true, It’s a matter of choice.

1:00:00

If they’re on medication, they need to be followed by a medical doctor and not just a psychologist or social worker.

1:00:11

Um, but so the answer is that they should be seeing at least twice a year and preferably a little long or even every four months.

1:00:27

OK, thank you, and following that similar ish question, dealing with transition, When does a parent no longer need to be present with her his or her young adult neurologist appointments?

1:00:42

Ah, Well, uh, we prefer that, the families are there, at least, until the uses 18.

1:00:59

It’s often opposit case that, even, when the youth is fully adult, they come in, if they’re still being seen by the child neurologist.

1:01:15

And we have a hard time trying to talk, to that, to the young adult, because the parents are so used to speaking for them.

1:01:29

Um, I don’t think that, uh, somebody who is still in high school, it should be seen without the parents.

1:01:44

And, as opposed to the adult neurologist, we will typically, always see the youth with the parents, but, like, guys suggested, have fun time privately, without them, as well.

1:02:09

OK, thank you.

1:02:11

Let’s see, we’ll try to go to 1 or 2 more questions.

1:02:15

We have a couple of questions that are related to medical marijuana, so not so much transition. Someone noted that their son was 20 years old, has had success with ticks disappearing, but not so much. Still having mild OCD and mood disorder and someone asked if there is current information on on current studies with medical marijuana. So I know that’s not the transition topic, but I could share what you know on that.

1:02:55

Well, it’s, it’s not the age transition topic, except I spoke about making good choices and the use of self medication.

1:03:09

This is a very complicated issue, which I don’t think is yet fully resolved.

1:03:16

Scientifically because, as you know, in New Jersey, Tourette syndrome is a condition which can justify a medical marijuana court and that’s even before the pending legislation to make it available for recreation.

1:03:45

Do not recommend it at this point.

1:03:48

Uh, because I think that it is not clear yet about safety, both in terms of any use in the developing nervous system.

1:04:06

But also, what I know about risk taking, in general, for people whose frontal lobes are not fully developed, which doesn’t occur until their mid late twenties.

1:04:20

And, the, uh, it’s harder to stop.

1:04:30

So, I, I would encourage people.

1:04:35

Um, to avoid it, But I cannot say that with certainty.

1:04:46

And I will also admit that for as long as I’ve been in practice, there has been an undercurrent of people who have used marijuana for medical conditions because it helps them to relax. And when you’re relaxed, you have fewer tips, and you’re less anxious.

1:05:11

But there are other ways to be mindful and other ways to avoid anxiety.

1:05:20

OK, thank you very much, doctor Brown, I think that will stop there. There are a couple of other questions, my apologies to those of you who asked questions that we did not get to this evening, but doctor Brown will answer. You’re going my apology for going on a little bit longer.

1:05:38

When we practice this last week, it was a little short, so why slowed it down? My College Eyes, that’s, that’s quite all right, thank you. We, we very much appreciate all that you had to say. And we thank you for your presentation tonight, and we thank everybody for attending, and I’m going to turn it over to Kelly to close up for the evening.

1:06:01

Yes. Thank you for joining our webinar on Outgrowing, the Child Neurologist Transition in Tourette’s syndrome. There is an exit survey, which we need everyone attending to fill out. The webinar blog is open now and available for the next seven days on the NGO CTAS website for any additional questions that were not covered in tonight’s presentation. That website is WWW dot N J C T S dot org. Also, an archived recording of tonight’s webinar will be posted to our website.

1:06:35

Our next presentation when to Worry About Your worrier will be presented by doctor Jerry … and is scheduled for March third, 2021.

1:06:46

This ends tonight’s session. Thank you, doctor Brown, for your candid answers and thank you everyone, for attending.

1:06:53

Goodnight.

 

Comments(9)

  1. Sharon B says

    Has anyone heard about the dental implant the minimize or stopped ticks? Last I heard the dentist who had made these claims was going to prove his findings with the Tourette’s institute.

    • Lawrence Brown, MD says

      There are limited information about this, mostly small studies from Japan that claim to help all sorts of both motor and verbal tics, In my opinion, this is an extreme version of distraction techniques. It shouldn’t be necessary to implant a device on the molars so a person could chew down when they feel the urge to tic, That is what habit reversal does.

  2. Boyce, S says

    My son has Asperger and ticks. No verbal. He is smart and doing amazing. He is the kindest gentleman I know. I’m his biggest fan. Lol.
    He’s 17 now and wants to be an engineer. Are there grants for education?
    Has there been any answers on the cause? Like is it environmental or from vaccines?

    • Lawrence Brown, MD says

      There are limited information about this, mostly small studies from Japan that claim to help all sorts of both motor and verbal tics, In my opinion, this is an extreme version of distraction techniques. It shouldn’t be necessary to implant a device on the molars so a person could chew down when they feel the urge to tic, That is what habit reversal does.

    • Lawrence Brown, MD says

      The Tourette Association (www.tourette.org) lists several scholarships specifically for students with tics or Tourette syndrome.
      As to the question about etiology, many researchers are busy working on the problem. There is a general consensus that, like other neuropsychiatric disorders, it is the intersection of genetic predisposition on a multi-genetic basis as well as environmental influences, Stay tuned,

  3. Elizabeth C says

    What can be done for RAGE reaction?

    • Lawrence Brown, MD says

      Rage attacks come on suddenly, last for a few minutes and are usually followed by regret. They need to be distinguished from typical tantrums, frustration or irritability from depression and OCD. Parents can help by understanding what triggers and the consequences of anger. It helps to reduce painful tics, get enough sleep, and talk about emotions and situations when everyone is calm. Treatment is usually behavioral, and a very recent meta-analysis showed that the non-pharmacologic approach is more often more effective than medication. Neuroleptics like aripripazole can be used both for tics as well as irritability and aggression. However, other medications may be very helpful, especially if there are co-morbidities including ADHD (stimulants) or mood disorders and depression (SSRIs).

  4. Betsy C says

    What if a child is 20 but functioning at about age 14? Medical marijuana helps tics? My sons tics, at 20, have all but disappeared since he has used it- but he still has mild OCD, mood disorder.

    • Lawrence Brown, MD says

      There is no link between IQ and likelihood of tics; they can occur in geniuses and those with intellectual disability.
      I tried to answer the question about medical marijuana for tic disorders; it is legal in many states including NJ, but one must balance risk and benefit. There are still many unanswered questions about safety in the developing nervous system and most specialists doubt that there is a unique mechanism beyond anxiety reduction which can be helped in other ways.

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