«My child has MS»

The family was used to visits to the paediatrician. «Alina* always had something,» says mum Monika Baumann*. The doctors explained the occasional headache in the early hours of the morning as hay fever and the tiredness at lunchtime as medication for asthma and neurodermatitis.

But when the headaches became regular and once she even started vomiting, her mother said to herself: «It can't be.» On the advice of a doctor's assistant friend, she had Alina's eyes examined. Alina could only see three per cent in her right eye. Diagnosis: optic neuritis. Three months and many examinations later, it was clear: Alina, 6 years old and just starting first grade, had multiple sclerosis (MS).

Monika Baumann sits on her balcony, Alina plays with Lego blocks in her room. «The diagnosis was a shock,» says the mum. It could have been a great year for the Baumann family: in spring, they had realised their dream of buying a condominium near Lake Sempach. And Alina was looking forward to school, which was due to start in mid-August. But the diagnosis changed everything. «The following months were the worst,» says the mum looking back, «it wasn't a good year.»

Disease with 1000 faces

It is known that MS is an incurable nerve disease. And also that it can lead to severe disabilities. However, few people realise that the disease can occur in children and adolescents. It is estimated that 3 to 5 per cent of paediatric cases are diagnosed before the age of 16. However, because children often recover quickly and completely from the first symptoms, MS is often not diagnosed until many years later.

It is also less well known that MS patients do not always face a life in a wheelchair. In many cases, sufferers live disability-free for decades. MS is also known as «the disease with a thousand faces» because of its very different courses. The disease progresses in relapses, whereby a relapse can occur at any time - on the next day, but also in 20 years' time. This triggers both fear and hope in those affected. They expect the worst. And yet they always hope for the best.

Alina's visual problems were quickly resolved. Cortisone helped against the inflammation, glasses against the persistent visual impairment. Alina's MS was treated with «Rebif» - a preparation that is injected under the skin. But it wasn't just the thrice-weekly procedures that became an ordeal for Alina.

The check-ups also revealed that her liver enzymes had increased. The doctors first reduced the dosage, then prescribed her a new medication called Copaxone. However, this had side effects that were irregular but serious. After taking it, Alina had difficulty breathing several times and sometimes vomited. «Two minutes of injecting, 15 minutes of panic,» is how her mother describes it. For the doctors, this was an unpleasant but harmless reaction. For Monika Baumann, it was frightening. She had the therapy stopped.

Although MS cannot be cured, the disease is treated with medication. These have the effect of delaying the progression of the disease or the next relapse. «We know that recurring inflammatory attacks can have severe effects on the still-developing brain,» says senior physician Sandra Bigi from Inselspital Bern, the only paediatric neurologist in Switzerland who specialises in MS in children and adolescents.

With therapy, she gives young MS patients a good prognosis: «It is a very realistic goal to experience a normal youth and lead an independent life.»

Nerves conduct more slowly

Alina felt better without the injections. «She went out again, played and laughed. I thought: This is finally my child again,» says the mother. But she also knows that there is no way around drug therapy in the long term. She is currently finding out about a new preparation that has a major advantage: It is administered by infusion and not injected. However, she has no way of knowing whether Alina's immune system will respond better to this third attempt.

Cognitive problems such as attention, concentration or memory disorders are typical for paediatric MS patients. Paediatric neurologist Sandra Bigi explains: «The nerves conduct more slowly by fractions of a millisecond, which means that those affected have a longer processing time.»

This means: «Children with MS are not less intelligent, but they need more time to organise and structure themselves.» In such cases, school adjustments are necessary - for example, compensation for disadvantages in the form of more time or reduced scope in examinations. «Sometimes this is difficult to get through to schools, as children and young people with MS are often not outwardly noticeable,» says the paediatric neurologist.

Educational balancing act

Last year, Alina completed a comprehensive test to clarify any cognitive impairments. She scored above average for her age. However, the first-grader has other problems in everyday school life. On the one hand, she is often plagued by extreme tiredness - a typical symptom of MS. On the other hand, she suffers from incontinence. For these reasons, the family decided to inform the school and teachers about the illness.

Alina was then allowed to decide for herself whether her classmates should find out about her MS - she decided in favour. Since then, a specialist in integrated support has ensured that Alina is not laughed at if she should wet her trousers.

A diagnosis of MS can be a major challenge not only for the children, but also for their parents. This is the case when it comes to parenting, for example, when it comes to finding the right balance between over- and underchallenging, understanding and authoritarian demands. «Alina now says she's tired whenever she doesn't want to do something,» says Monika Baumann. She, who is with her daughter six days a week, doesn't find this very difficult. «I look at Alina when she really can't go on.»

Adolescents often perceive the illness as a step backwards in the detachment process.

Sandra Bigi, neurologist

However, her husband, who stays at home with the children one day a week, finds this more difficult. In addition to this educational balancing act, dealing with their own anxieties also presents parents with difficulties. «If I'm anxious, it's transferred to the child,» says the mother. So she tries not to be anxious.

When Alina reaches puberty, new problems arise. Sandra Bigi, who advises many affected families at Inselspital Bern, says: «Many young people find it difficult to accept that they are different from their peers at a time when they have everything else on their minds.» In addition, young people often experience the illness as a step backwards in the process of detachment from their parents.

The paediatric neurologist recommends that the affected families receive psychological support. It is crucial that the young people participate on their own initiative and take responsibility themselves. «It's the parents' job to encourage them in this.»

The Baumanns are not yet thinking that far ahead. «We have to take it as it comes,» says Alina's mum. Like any mother, her goal is for the children to have a happy childhood. She is currently worried that their second child, 9-year-old Marco, might feel neglected because of the illness. Monika Baumann would like to discuss such things with other affected parents. This wish is not so easy to fulfil due to the small number of people affected - less than 1 percent of MS diagnoses are made under the age of 10.

«MS? - What is that anyway?»

Tina Furer, a young woman from the canton of Solothurn, had her first relapse when she was 12 years old. She was in sixth grade at the time and on her final trip to Bern. Classmates and teachers told her that she was cross-eyed. «I didn't even realise it myself.» The paediatrician diagnosed optic neuritis and Tina was referred to hospital, where she stayed for a week.

After several examinations, including a magnetic resonance imaging (MRI) scan and a so-called lumbar puncture - the removal of cerebrospinal fluid from the spine - the diagnosis was finalised. The fact that she had MS didn't particularly move her at the time, says Tina. «I didn't even know what MS was. Besides, I didn't have any pain.»

It is uncertain when and in what form the new boost will come.

Like Alina, Tina Furer recovered within a few months from the immediate relapse following the administration of cortisone. She tolerated the medication she was injected with to treat her MS well. But after two years, an MRI revealed «hidden relapses» that Tina hadn't even noticed. Since then, she has been taking a new medication with which she has had no problems. The examinations she has twice a year on her head and once a year on her spinal cord have also been positive.

Today, Tina Furer is 18 years old and lives the life of a normal teenager. She has no cognitive limitations. On the contrary: she has just graduated from high school - with a top grade of 6 in maths. Since six years and the first relapse, the MS has never made itself felt externally.

She only remembers her illness by travelling to the Inselspital in Bern every four weeks, where she is administered the medication intravenously for treatment. «I don't notice anything in everyday life,» says Tina. Her mother adds: «We assume that it will stay that way.» And her father hopes: «Maybe there will soon be a drug that not only stops MS, but also cures it.»

Learned to live with it

Tina knows that the next episode is sure to come. But she can't know when it will be or what form it will take. Nobody knows which of the 1000 faces the disease will show in her. And how MS will affect the life Tina has in mind.

«I have to take it as it comes,» says Tina. «I've learnt to live with it.» She will soon be starting her maths degree with a minor in computer science. Maybe she'll go travelling before then, she says.

* Names known to the editors.