Zack Lamb has one of the most severe cases of Tourette Syndrome in the US - can drastic surgery help relieve his violent involuntary tics?
Airdate: 
Tuesday, March 11, 2014 - 21:32
Channel: 
SBS One

Last year, Dateline's Aaron Lewis met some extraordinary youngsters at a camp for children with Tourette Syndrome in the United States.
 

One of them, 14-year-old Zack Lamb, has one of the most severe cases in America and his condition has grown progressively worse since Aaron first filmed with him.

He involuntarily hits out at his family in violent rages, which got so bad at one point he had to be put into a coma.

Aaron returns to the story to meet a family at a crossroads.

There's only one procedure left that they believe might bring him some peace; a risky operation known as Deep Brain Stimulation.

It involves implanting a device that sends electrical impulses to Zack's brain, which might help curb his relentless ticcing.

But it's such a rare procedure, can Zack's family find a surgeon willing to perform this potentially life-altering surgery?

WATCH - See Aaron's latest insight into this deeply misunderstood condition.

TWITCH AND SHOUT - Replay Aaron's original story on the Twitch and Shout summer camp for children with Tourette's, first broadcast in August 2013.

UPDATE - Dateline continued to follow Zack through his surgery and back to the next Camp Twitch and Shout in a story called Zack's Battle from September 2014.

INTERVIEW WITH AARON - Aaron talks to SBS World News Radio about his story, including more details on the delicate operation Zack faces.

TOURETTE'S FACTFILE - Find out more about the syndrome and how to get local advice and support from the Tourette Syndrome Association of Australia.

Interview With Aaron



Aaron talks to Greg Dyett from SBS World News Radio about his story, including more details on the delicate operation Zack faces.

Tourette's Factfile

The Tourette Syndrome Association of Australia provides local information and support. Here are some of its facts about the condition"¦

- Tourette’s is a neurological disorder that usually starts between the ages of 2 and 21 and lasts throughout life. People with Tourette’s have a normal life span.

- It’s characterised by rapid, repetitive and involuntary muscle movements and vocalisations called 'tics’, which can vary from simple twitches and noises, to more severe actions such as hitting and biting or the involuntary utterance of obscene words.

- Typically tics increase as a result of tension or stress and decrease with relaxation or concentration on an absorbing task. The severity of symptoms can also vary generally over time.

- People with Tourette’s are more likely to also have other behavioural problems, such as Obsessive Compulsive Disorder (OCD) or Attention Deficit and Hyperactivity Disorder (ADHD).

- The cause has not been definitively established, but it seems to stem from the abnormal metabolism of a brain chemical called dopamine.

- Studies suggest that Tourette’s is usually, but not always, inherited. The severity can vary considerably between generations and the disorder may not be evident at all in some people.

- It’s named after 19th Century French neurologist Dr George Gilles de la Tourette, who was the first to specifically identify the syndrome.

- There is no cure, but medication can control some of the symptoms in some cases. There is currently no medication that can eliminate all symptoms.

- Some sufferers see a marked improvement in their condition in their late teens or early twenties.

Follow the links above for more information, plus the Camp Twitch and Shout site has more on the camp in Aaron’s story.

Resources

Transcript

First tonight, reporter Aaron Lewis takes us back to a family he filmed last year when he visited a summer camp for children suffering with Tourette Syndrome. One of the young people he met there was Zack Lamb, who has one of the most severe cases of Tourette's in America. Zack's condition is worsening and his family now has to face the awful decision of whether Zack should undergo life-threatening brain surgery in a last-ditch attempt to stop his Tourette's in its tracks. Here is Aaron with more.

REPORTER: Aaron Lewis

Every once in a very long while you meet someone who changes the way you look at the world. For me, one of those people is 14-year-old Zack Lamb. He has Tourette Syndrome - one of the most severe cases in America. Zack's life defies description and his will to live is simply staggering.

NINE MONTHS AGO: This was the last night of the summer camp where I had first gotten to know Zack and his unforgettable friend, Cole Johnson. It is the camp Twitch and Shout prom and all these kids have Tourette's. That night was the happiest I had seen Zack.

REPORTER: Any kissing behind the gym?

ZACK LAMB: Yes! No. No!

REPORTER: Which is true?

ZACK LAMB: Yes! No. It's no. Yes! Shut up douche bag! Sorry.

Most Tourette's tics are fairly simple. The person affected will suddenly shout, curse, blink or flail.

ZACK LAMB: Sorry. Randy SAP savage.

The tic is that single involuntary action. But Zack's tics are complicated. One of Zack's tics paralyses him completely - and sometimes for weeks. Another tic compels him to hit his family, while he watches powerlessly from inside himself. This violent tic is a monster that has come to live in his body.

ZACK LAMB: I feel terrible when I hurt them. I feel like, "Why am I doing this?". I feel terrible.

REPORTER: Have you been hurting them today, do you think?

ZACK LAMB: Yeah.

REPORTER: It's hard, right, because it is not your fault.

ZACK LAMB: You are the one doing it but you are not the one doing it. I black out pretty much.

REPORTER: Are you watching yourself hit your mom? Or do you realise afterwards, "Oh goodness I just hit my mom"?

ZACK LAMB: Sometimes both. Like it makes - sometimes I notice I'm doing it and sometimes I don't notice I'm doing it. I'm like sometimes I'm doing it and I'm like "Oh crap, look what I've just done".

If Zack sounds drugged - that's because he is. He has taken everything that one could take to try to bring his body back under his control.

KARL LAMB, ZACK'S DAD: It's like so many pills. I wish he didn't have to have 'em, but it's like... Hope it works.

These days his life is more like a waking coma than a childhood.

ZACK LAMB: I'm tired.

KARL LAMB: Yeah?

REPORTER: Are you kind of willing to get drugged up to you feel safe?

ZACK LAMB: Well if I get drugged up I don't tic so much and hurt my family.

REPORTER: That sucks. Does it make you sleepy or just dopey?

ZACK LAMB: Both.

Katie and Zack's relationship doesn't seem to have suffered much.

KATIE LAMB, ZACK'S SISTER: We've gotten way closer like the past couple of months, just like with everything that has been happening with our family lives. Last week he was ticcing really bad downstairs and I was like "Come on, Zack, come and watch a movie in my room", and he was fine and didn't tic at all.

These days are a few moments when Zack is not ticcing - but that's when you see the sweet and charming kid peering out from underneath all that medication. Those moments Zack and I goof around together. Like when we tried to launch a toy rocket on his lawn. But Zack's tics, including the violent ones, just overcome him, no matter how hard he tries to push them down or how much medication he takes.

MARY LAMB, ZACK'S MUM: Are you done?

I have also seen Zack's rage tics turn fearsome. Some of his tics have smashed walls and broken bones. All of that brought on my tiny neurological hiccups - repetitive little accidents in his brain.

ZACK LAMB: Stop.

These complex tics come and go for moments or months - all of them essentially uncontrollable.

KARL LAMB: Sometimes when he hits me at a certain angle it rips the skin off and that scar right here - when he was in a biting mode, he actually took a chunk right out of my arm.

REPORTER: He bit a chunk out of your arm?

KARL LAMB: Yes, yeah, yeah he did. The hitting is increasing, you know, it's more often. I mean, before, a couple of times a day. You know, the old saying, just take life one day at a time - I wish I could. With Zack it's like seconds. Every second is different. I mean one minute we are talking and the next minute he is hitting me so hard I drop to the floor. He hit me in the back so hard a few weeks ago that I was in bed for a day and a half. My spine just hurt.

REPORTER: What does your family have that has allowed them to survive this?

KARL LAMB: I think love. Really. There's no question that Zack loves us. I mean the moments when he is not stoned or not in the violent stage or violent tic, I hold him.

Since the violent tics began about 18 months ago, each member of the family has dealt with it in their own way. Katie tries to act like a normal big sister. Mary soldiers on.

MARY LAMB: Come on. Come on. He's fine! You are done, take a break.

Karl takes the most of the hits - but maybe not the worst of them.

MARY LAMB: Just leave him down there, honey, he is fine. Just leave him, he is not going to hurt himself or anything.

And Zack, he tries desperately and futilely to hold it all in. And somehow he rarely loses his sense of humour about it.

REPORTER: Wow! I don't know what to do and I don't think anybody knows what to do when you have a tic like this and you are all over the place.

ZACK LAMB: Chuck Norris!

REPORTER: Chuck Norris, he might know what to do. That is a fact.

ZACK LAMB: Jack!

In the summer of 2014 was a turning point for Zack. His tics began to escalate and became incessant. Until in August he was hospitalised in nearby Chapel Hill, Carolina.

REPORTER: How do you feel?

ZACK LAMB: Terrible. I can't stop ticcing. It's painful too.

REPORTER: In the legs and stomach?

ZACK LAMB: Yes, like things like - first my neck is so bad and my head and I can't stop it.

No one knew for certain what to do. Zack's condition is so rare - and now so severe - that there simply were not treatment options.

MARY LAMB: Zack, no, no, no, nobody is going to put you in a strait jacket, nobody is going to take you anywhere. I swear to you.

And due to the anxiety disorder that almost always accompanies Tourette Syndrome Zack's mind latched on to a paranoid fear he was going to be tied down and abandoned in a psychiatric ward.

KARL LAMB: We can stay with you.

MARY LAMB: OK, you are going to be the health kid.

So Mary asked for the only thing she could think of - to put Zack into a medically induced coma.

MARY LAMB: I want him to have a break and I want his body to have a break, but with it comes big possibilities, I mean, how long are they going to keep him like this and what will happen to his mind and if he comes out of it and he still goes back to where he was, then what do they do? Because he is just all doped up.

Zack is not a big guy - but it takes a lot to put him down. Finally his eyes begin to close and the wait started. The time it took for Zack to go fully under was hellish for his parents.

MARY LAMB: It was the worst hour and a half that I have ever lived through with him. With anything. The worst and because he just wasn't going to sleep with it, it just wasn't kicking in, and he was just totally tortured by it - just tortured. And like an animal. And so they are holding him down and then he would look at me and he was like, "You won't leave me right?" And I just felt like I wanted to hang on to him and then the fear of, well, when they do this and they put him to sleep - will he really wake up? You know, and all of that, and I know they know what they are doing and everything, but I have that fear too. But I couldn't let on to him that I had it and I was like "Of course, I guarantee you" and deep inside I say that but they don't know.

No one knew how long to keep Zack under or what would happen when they woke him up. Katie was ordered to stay with friends.

KATIE LAMB: I would call my mom before I went into class and she wouldn't really tell me anything. She was just saying that she was in with the doctors. I just burst out in tears, because I don't know, like I'm so scared for him.

For a family so used to managing crisis, waiting seemed especially hard.

KARL LAMB: Right now we are just playing Russian roulette with medicine. They give him a shot of this, that doesn't work, that increase this one, that doesn't work, they - so I don't know how long this is going to go on.

On the first attempt to bring Zack back to consciousness, his legs begin kicking long before he is even awake. Different medicines were tried - he seemed to come and go. Twice I saw him crack a smile at a joke that someone in the room told. But mostly he didn't seem to be there very often. Around then is when I first heard the letters DBS used in significant whispers. Deep Brain Stimulation surgery involves implanting electrodes in the brain. It is rarely done for Tourette's or on anyone as young as Zack. Mary had contacted 48 doctors about performing the surgery. They had all said no.

MARY LAMB: Just the way that surgery works is it sends out electrical impulses that interrupts the neurotransmitters in hopes that it decreases tic activity and it's not FDA approved, it's not - it's very - it's experimental. But they have been doing it with patients with Parkinsons for a long time. Initially we looked at it and talked about it, and even a couple of years ago Zack was like, no, nobody is cutting into my brain, and now he begs me - mom please find anyone to do the surgery, please, make it stop. And that's like over-the-top heart-wrenching you know, but now I found somebody local here in Carolina who said it is doable. He hasn't done it on a kid this age. He has done it on a 16-year-old. I don't know how many or anything, but he said it's doable, so Zack has an appointment on November 15. So we are really optimistic, excited, hopeful.

Zack was finally brought back to consciousness and his legs did stop ticcing. Although not in the way the family had hoped. His brain had now shut off the use of his legs entirely and he had been in a wheelchair for weeks. But now concerned staff at Wake Forest Baptist Hospital had actually moved up Zack's appointment for his DBS consultation - to today - September 20 - in just a few hours' time.

KARL LAMB: You know, it's kind of a mixed feeling - I'm a little worried, but yet really he doesn't have much of a life right now.

Katie is worried and that was made worse at school yesterday.

KATIE LAMB: In my class yesterday we were learning about the brain and we saw, like, a girl that her brain surgery didn't go well and she is not the same anymore. Yeah - bad timing.

A year of this, and I'm still amazed at how casual Zack's destructiveness can be.

MARY LAMB: Come on, man. Can we move you away from the wall, please?

Meanwhile he calmly checks his hand to see if he has broken any bones. This appointment is the best chance the family has had to convince a neurosurgeon to intervene.

ZACK LAMB: I did not sleep worth crap last night. Ticcing all night.

MARY LAMB: That is the big one that interferes with his life.

Dr Ihtsham Haq is the consultant neurologist at the Wake Forest Baptist Hospital.

DR IHTSHAM HAQ, NEUROLOGIST, WAKE FOREST BAPTIST HOSPITAL: I want to get an idea of what your tics are, I want to run through that, but I think the time is best served talking about the surgery itself and what your thoughts are.

He is very clear there are real risks to the surgery and equally clear that the benefits, if any, are unpredictable - anything from a small reduction in symptoms to potential life-changing results.

DR IHTSHAM HAQ: There is a chance that as it grows it continues to pull the leads out of position also.

When asked, it takes the family almost an hour to lay out Zack's full history of tics for the Dr Haq's consideration and even after all that, some tics have been left out.

MARY LAMB: The day I took him to the emergency room is because he was banging his head.

DR IHTSHAM HAQ: OK. Any other tics I need to know about.

MARY LAMB: He did have a tic for a while where he actually jumped out of a moving car. That was a big one! Thank you! Some things we take for - you know.

It is a moment that is not lost on the doctor. Hearing that Zack has had so many crisis-level tics that his mother forgot about his phase of jumping out of moving cars. Other tics that almost got left out - his fork throwing stage, the months where he savagely beat his own sternum and the times he nearly ripped off his own testicles.

MARY LAMB: He would punch himself in his chest, the sternum really badly. His head.

KARL LAMB: And his testicles. Oh yes.

DR IHTSHAM HAQ: The most notable thing is that Zack's presentation is the fact that he has so many self-injurious tics and that I think is the biggest danger, the fact that he is doing things. He feels compelled to do things that cause himself and other people pain and is unable to stop even though he clearly doesn't want to be doing them and that isn't something that everyone with Tourette's does, and that is the kind of thing that makes you want to jump on the case and want to treat it as aggressively as possible, be it with medicine or with the kind of next stage approaches which we have begun to talk about here.

After the meeting the family is overwhelmed by nervous excitement, but Zack is a different kind of nervous.

REPORTER: Are you worried about the risks?

ZACK LAMB: Yeah, I could have a stroke afterwards or during it and I could die and...

REPORTER: You haven't thought about that before?

ZACK LAMB: No.

REPORTER: That's scary stuff.

ZACK LAMB: Yeah.

REPORTER: How do you feel about that idea now, Zack?


ZACK LAMB: Not that great now! But, see how it goes.

And that's kind of where Zack and his family still are today. That meeting was only the first of a cautious series of consultations. I'm told the Wake Forest Baptist Hospital will be making a final decision any day now. I did spend Christmas day with the Lambs. Zack was walking again, but his tics were as severe as ever. The medication still wasn't working. But the family was celebrating in fine form - having survived a hell of a year. Someone even wrapped a present for Zack and I to share.


There was one thing that the doctor told me that he never repeated to Zack - or to his family. I didn't want to mislead him, to get his hopes up.

DR IHTSHAM HAQ: So the potential benefits are that his tics are gone.

REPORTER: His tics are gone?

DR IHTSHAM HAQ: No, no, that is a really hypothetical one, I don't want to pretend that is what we are expecting. But you know, the doctors have put out a bunch of videos where people's tics are largely gone and some of them are kids - teenagers really. And these are the videos that you see circulating around at conferences. People who are in a similar state to Zack and then they are turned on and they are not. You can't tell that they have tics at all.

Gone. I know that no-one expects that to happen, but I hope it does. And it was only in the last few days, looking over these videos, that I realised that I don't have to worry about getting Zack's hopes up - Zack knows all about hope.

ANJALI RAO: What an extraordinary boy and just such a strong family. Aaron Lewis filming and reporting there. His story was produced by Aaron Thomas. Well, our website has more about Tourette's and you can replay that first piece on Zack from last year.

Reporter/Camera/Editor
AARON LEWIS

Producer/Editor
AARON THOMAS

Original music composed by

VICKI HANSEN

11th March 2014