Saturday 10 December 2016

'I was always wondering: will we ever get our little girl back?'

The sudden onset of Tourette's and its bizarre behaviour can be worrying -- but it's not a life sentence

Maebh Coyle

Published 24/01/2012 | 06:00

MOTHER-of-two Beatrice Gallagher* first noticed her daughter ‘ticing’ when she was six. Up to then, like most people, Beatrice had a very limited knowledge of Tourette’s syndrome (TS). "I thought

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"I thought the only Tourette's that existed was the vocal one. Then it hit us in February of last year. We experienced what is known as storm Tourette's, which comes on aggressively. What I noticed first was Kitty* flicking her eye a lot.

"Initially, I thought it was her just trying to be cute, but then it moved on and she looked as if she was pulling or stretching. It progressed week by week until it went into her shoulders, her diaphragm and her hips, causing her to kick her leg out as she walked. It went on for about four or five hours a day for weeks."

Beatrice decided to take her daughter to the hospital.

"I felt patronised by one doctor, who was insinuating I was making a big deal out of nothing and that caused me to start losing confidence in myself. I was saying to my husband: 'Are we imagining this?'"

After a fourth visit to hospital Kitty was admitted and that was the best thing that could have happened, according to Beatrice. Kitty was visibly distressed by this stage, as were her parents.

"She was very frightened and I recall her behaviour being frantic at times. It left us heart-scalded. But, once admitted, the nurses in Temple Street were so supportive. I finally felt like I was being listened to.

"They ran lots of blood tests on her and she was seen by the neurology department. The head neurologist there confirmed that she had a body-tic disorder. It was too early to call it Tourette's syndrome -- he didn't want to label her too soon."

The onset of TS coincides with an imbalance of the neurotransmitters dopamine and serotonin in the brain. There seems to be a genetic basis for the condition and it most commonly manifests as excessive eye-blinking, facial movements, sniffing, and throat clearing.

It also tends to first appear between the ages of seven and 10 and boys are three times more likely to be diagnosed than girls.

The genetics of the condition are extremely complex and some researchers now believe that a child may inherit a vulnerability to a spectrum disorder that includes TS, obsessive compulsive disorder (OCD) and attention deficit hyperactivity disorder (ADHD).

According to Dr Bryan Lynch, consultant paediatric neurologist at the Children's University Hospital, Temple Street: "These disorders occur more commonly in children with Tourette's syndrome than in the general population."

Often the family cannot recall a family member who had tics or other conditions, due to the lack of a diagnosis or perhaps even a very mild form of TS 'buried' somewhere in the family history.

Research has shown that some infections, such as streptococcal throat, may play a role in triggering TS in certain children.

Although the bacteria do not cause TS, it seems that some individuals may inherit a susceptibility to the syndrome and the way they react to some infections, thus triggering symptoms in a child.

So a child will either have a predisposition to TS or not and the bacteria seems to be a catalyst rather than the root cause.

Parents are often relieved the condition does not affect intelligence or learning ability in any way, nor does it affect life expectancy. In fact, Carol Pitcher, chair of TS Ireland, often reiterates that point to parents.

"This is not a life-threatening condition. Life does go on and your child can lead a normal life."

The other good news is that the severity of the tics tends to decrease for most children as they pass through the teenage years. It is believed that, for around half of TS patients, many of the symptoms will disappear by the age of 18 or at least will be minimised.

"On average, many children will grow out of their tics with time, or learn to manage them better," says Dr Lynch.

One of the most upsetting characteristics of this condition, for parents and children alike, is their sudden onset.

"Parents are understandably anxious given the often dramatic and bizarre presentation of repetitive tics in children, and it is appropriate that they seek medical advice. However, in most cases, the diagnosis is immediately obvious and no further investigation or urgent treatment is necessary," says Dr Lynch.

In fact, he suggests that it is important that parents try to stay calm.

"Often, if the family anxieties can be assuaged, the tics will improve," he adds.

Carol believes that getting a diagnosis can relieve a substantial amount of stress for parents and children alike.

"The taboo about mental health makes people less likely to go for diagnosis as they are scared of their child being labelled.

"Getting a diagnosis is absolutely essential -- it's the beginning of treatment. Also, the child feels validated and people begin to believe that he/she is not ticking on purpose," says Carol.

"Also, the parents finally feel like they're being listened to and that this is not just a figment of their imagination."

For Beatrice, one of the most challenging aspects was to keep life going on as 'normal' as possible.

"I was told to not give the tics much attention but that was incredibly hard. I was forever wondering: 'Will we ever get our little girl back?'. But we took their advice and we sent her back to school and continued on.

"I phoned all her friends' parents to explain about the tics and we spoke to the headmistress at her school too so that all the people in Kitty's life would understand that she had this disorder.

"It's still hard because the tics can disappear for periods and there's a sense of relief but then, seemingly out of nowhere, they can reappear.

"We attend the St Frances Clinic in Temple Street with Kitty regularly and that has been very helpful. They use play therapy to help her to discuss her worries and to keep them in perspective."

They've advised Beatrice to keep Kitty away from TV or other things that are beyond her age, such as MTV videos.

"It's hard, especially because she loves Britney Spears and she loves dancing!"

*Not their real names

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