1. family and parenting
2. children

Childhood MS –
a guide for parents
Introduction
4 What is MS?
6 What are the
possible causes of MS?
Genes
‘Environmental’ factors
8 How is childhood
MS diagnosed?
Why does it take so long?
Diagnostic tests
Telling your child
12 How could MS
affect my child?
Types of MS
Symptoms
What does the future hold?
16 Treating and
managing MS
Children in control
Steroid therapy
Disease modifying drugs
Physiotherapy and exercise
Complementary therapies
Healthy eating
Managing mood changes and depression
22 Cognitive issues –
memory and thinking
What is cognition?
Managing cognitive issues
Memory tips
27 MS and the family
Explaining things to siblings
Teenagers and MS
32 School, college
and university
What issues might my child face in school?
Fatigue
Bullying
Taking medication at school
35 Getting the best
from health and
social care services
Who is involved in your child’s care?
Respite care and short-term breaks
39 Financial matters –
benefits and grants
Finances
Disability Living Allowance (DLA)
Disabled Facilities Grant (DFG)
Family Fund
MS Society grants
Multiple Sclerosis (MS) is usually thought of as an adult condition, but it
is now becoming apparent that children and teenagers can also develop
it. There are estimated to be around 85,000 people with MS in the UK
and perhaps as many as five to ten per cent of young people with MS
will experience the onset of MS before the age of 16 – that’s up to 4,250
young people.
1
The youngest child diagnosed with MS is two years old. MS-like
symptoms can turn into many other things or nothing at all. Childhood
MS may be under recognised, either because symptoms are mild and
quickly pass, or because they are put down to other conditions that are
known to be more common in children.
Some children may have neurological symptoms but not get a diagnosis
at all. MS has traditionally been seen as an adult condition, so is rarely
considered as a diagnosis for children. With hindsight many adults can
trace the origins of the condition back to their childhood.
If your child has been diagnosed with MS, or MS has been suggested as
a possible reason for their illness, this booklet may help you understand
more about the condition, about the care your child should receive
and how you can find the support available to manage the changes
MS can bring.
42 Improving services and
care for children with MS
44 Further information
MS Society publications
46 Useful organisations
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Childhood MS – a guide for parents
© MS Society 03/08
Childhood MS – a guide for parents
© MS Society 03/08
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What is MS?
To understand what happens in MS, it is helpful to understand what
happens in the body’s central nervous system (the brain and spinal cord).
The brain controls bodily activities, such as movement and thought by
sending messages from the brain, like picking up a glass or lifting your
foot. The spinal cord is the main pathway for these messages between
the body and the brain.
Myelin
cell body
myelin
nerve fibre (axon)
Passage of messages along the axon
Surrounding and protecting the nerve fibres of the central nervous system
is an insulating substance called myelin, which helps messages travel
quickly and smoothly from the brain to the rest of the body.
MS is an autoimmune condition. This means that the immune system,
which normally helps to fight off infections, mistakes its own tissue
as foreign and attacks it. In MS, the immune system attacks the myelin
surrounding the nerve fibres. This damages the myelin and strips it from
the nerve fibres, either partially or2 completely, leaving scars (also known
as lesions, plaques or sclerosis).
Demyelination in MS
cell body
damaged myelin (demyelination)
myelin
nerve fibre (axon)
Distorted messages
This damage to myelin disrupts messages travelling along nerve fibres.
The messages can slow down or become distorted.
The easiest way to understand what happens in MS is to think of the
nervous system as an electrical circuit, with the brain and spinal cord
acting as the power source and the rest of the body being the lights,
computers, TVs, and so on. Nerves are like electric cables linking the
appliances together with myelin being the plastic insulation around these
cables. If the insulation gets damaged, the appliances will become faulty
or temperamental and there may be a short circuit.
As the central nervous system links all bodily activities, many different
symptoms can appear in MS. The specific symptoms that appear depend
upon which part of the central nervous system is affected and the function
of these areas.
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Childhood MS – a guide for parents
© MS Society 03/08
Childhood MS – a guide for parents
© MS Society 03/08
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What are the
possible causes of MS?
MS isn’t contagious – people do not ‘catch MS’. Neither is it hereditary,
so it is not passed directly from parent to child. There is nothing that
we know about MS which suggests you or your child could have done
anything different to avoid getting it. There appears to be a combination
of factors that lead to someone developing MS:
Genes
Although MS is not a hereditary condition, there is some research evidence
to suggest that there may be a genetic link. Around one in every 800
people in the general population of the UK develops MS. Where one
parent has MS, the chances of a child developing MS are higher, but
still very small; about 16 in every 800. So the chances rise where people
have shared genes, but there is no single gene which causes MS. It is
possible that a combination of genes along with environmental factors can
make some people more susceptible to developing MS.
Studies with twins show that if one twin is affected with MS, there is
around a 30 per cent chance that an identical twin (who is genetically
identical) will also develop the condition. If genes were entirely responsible
for MS, we would expect to see a 100 per cent chance of them2 developing
MS. Genes play a role, but are certainly not the whole story.
‘Environmental’ factors
MS is more common in areas further away from the equator. It is virtually
unheard of in places like Malaysia or Ecuador but relatively common
in Britain, Scotland, North America, Canada and Scandinavia. It is not
clear why, but it is possible that something in the environment, perhaps
bacteria or a virus, plays a role. No single virus has been identified as
contributing to MS, but some researchers think that a common childhood
virus may act as a trigger by disturbing the immune system or indirectly
setting off a process whereby the immune system attacks itself. This
theory remains unproven and many people
who do not have MS would
3
have also been exposed to these viruses. It is important to remember
that there is nothing you could have done to prevent your child from
developing MS.
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Childhood MS – a guide for parents
© MS Society 03/08
Childhood MS – a guide for parents
© MS Society 03/08
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How is childhood
MS diagnosed?
Why does it take so long?
Diagnosing MS can be difficult, both in children and adults due to its
complexity and variety of symptoms. Some MS attacks are very brief.
There is no single diagnostic test and other conditions with similar
symptoms may need to be ruled out before a final diagnosis can be
made. Your child should be examined by a neurologist, a doctor who
specialises in conditions of the central nervous system.
Although there are clear guidelines for neurologists to diagnose MS in
adults, the process for children is not so established. A diagnosis may
be made by a paediatric neurologist, an adult neurologist, or more usually
a combination of the two. Sometimes, it can feel as if you and your child
are stuck in ‘limbo land’ – waiting for a diagnosis so that you know what
you are dealing with.
To reach a diagnosis of MS, there needs to be evidence of MS activity
in two or more parts of the brain or spinal cord and on at least two
occasions. If your child has experienced a single episode of symptoms,
they are unlikely to be given a diagnosis of MS.
You may have been told that your child has ‘ADEM’ (acute disseminated
encephalomyelitis), ‘optic neuritis’ or has had a ‘clinically isolated
syndrome’. These can all have the same symptoms as MS, but might
happen only once and not return. If further episodes do occur, then MS
might be diagnosed. You can find out more about these conditions by
calling the MS Society information team.
Diagnostic tests
The following are the most commonly used tests and procedures.
None are conclusive on their own, but each can help to come to a clear
diagnosis. To rule out conditions that mimic MS, other tests may also
be done, including blood tests. You will be able to stay with your child
throughout most of these procedures.
Neurological examination
The neurologist will ask either you or your child (depending on their age)
lots of questions about symptoms and problems now and in the past.
They will also do a physical examination to check for subtle changes
in movement, reflexes or sensation. These tests can pick up even
tiny changes which you and your child might not even be aware of.
Magnetic resonance imaging (MRI)
An MRI scanner uses a strong magnetic field to create a detailed image
of the brain and spinal cord. It shows the exact location and size of any
damage or scarring (lesions) in the brain. To get the image of the brain
and spinal cord they must lie down and enter a small tunnel in the
centre of the MRI scanner. The process can take between 20 and 60
minutes and is painless, but quite noisy. Your child might feel nervous
about the scan – it is a large, noisy machine in quite an unfamiliar setting;
but you can be in the room to reassure them and they can usually wear
headphones and have their own music played while they are in the
scanner. The scan itself does not cause any pain. Great Ormond Street
Hospital has a free downloadable factsheet explaining MRI for children.
(See useful organisations at the back of this booklet)
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Childhood MS – a guide for parents
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Childhood MS – a guide for parents
© MS Society 03/08
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Evoked potentials
This involves testing the time it takes for the brain to receive messages
from the eyes or ears. The neurologist will place small electrodes on
your child’s head to monitor their brain waves responding to what they
see or hear while looking at a screen. These electrodes measure tiny
electrical impulses; they are not painful for your child. If MS or a similar
condition is active, this test can detect messages to and from the brain
travelling more slowly than usual.
Lumbar puncture
A lumbar puncture (or spinal tap) involves a needle being inserted
into the space around the spinal cord, under local anaesthetic. Not all
children will need this test. A small sample of the fluid that flows around
the brain and spinal cord, called ‘cerebrospinal fluid’, is then taken
and tested for abnormalities that show evidence of MS. You can usually
stay with your child to comfort them. Some children are sedated for
the procedure as it can be uncomfortable and it is important to lie still.
Your child will be asked to lie on the bed on his or her side and to curl
up into a ball. The nurse will help the child to keep in the correct position.
They will apply a local anaesthetic here before starting. The doctor will
feel your child’s lower back and locate the correct space between the
vertebrae (the bones of the spine). The doctor will then wash the skin
around this area and cover the surrounding parts of the back with a
sterile towel before inserting the needle. The fluid will be sent to the
laboratories to be examined. In some cases the fluid pressure will also
be measured. People commonly report headaches following a lumbar
puncture. This is a recognised side effect and the neurologist can advise
on how best to manage this. Bed rest may help with this. Great Ormond
Street Hospital has a free downloadable
factsheet on this procedure.
4
(Details in the back of this booklet)
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Childhood MS – a guide for parents
© MS Society 03/08
Telling your child
Should I tell my child about their diagnosis? All parents of children
with MS will ask themselves this question and will be keen to get it right.
The parent-child relationship is built on many things, one of which is
honesty. Children will be very aware that something is wrong. They know
you are upset, they know that most children do not undergo MRI or
lumbar puncture. You may want to provide honest information to your
child about their diagnosis. It is okay to tell your child that the diagnosis
makes you feel sad, they already know this. It can be very helpful to tell
them directly that they do not have cancer, that they are not dying and
that MS is not their fault. These are all things that children with MS tell
neurologists and paediatric teams that they are afraid of. There are good
reasons for telling your child about their diagnosis, but it is an individual
choice and it depends upon their maturity and ability to receive
the information.
Remember:
• When you start talking about the diagnosis, you’ll be giving them
the vocabulary and also the permission that they need to talk about
their feelings.
• They’ll be dealing with health care professionals a lot and need to
be OK about this.
• Children will often take their cue from you about how they are going
to act in any situation. If you can talk to them about their concerns
and questions, they may be able to deal with the situation more calmly.
Childhood MS – a guide for parents
© MS Society 03/08
11
How could MS
affect my child?
Types of MS
MS can affect people very differently and one of the most frustrating
aspects of the condition is its unpredictability – not knowing what
symptoms may arise, when, or how long they will last.
Relapsing remitting MS
Most people with MS, including children, are first diagnosed with
relapsing remitting MS. This means they experience a relapse or flare
up of symptoms (also known as an attack or exacerbation) followed
by remission. (The period of stability between relapses when symptoms
settle down or disappear is known as remission. Remissions can last
any length of time, even years. No one knows exactly what makes MS go
into remission.) A relapse is usually defined as the appearance of new
symptoms, or the return of old symptoms, for a period of 24 hours or
more, at least 30 days since the start of any previous relapse. If your
child has a temperature, because of an infection, for example, symptoms
can get temporarily worse and they may appear to be having a relapse.
But this flare up of symptoms is caused by a raised body temperature,
rather than by new MS activity and the symptoms fade as
the temperature
5
returns to normal. This is known as a ‘pseudo relapse’.
Relapses can take a few days to develop and can last for days, weeks
or months. Symptoms can be mild or severe. Most children recover well
from relapses. In the early stages of relapsing remitting MS, symptoms
can disappear completely during remissions. However, after several
relapses there may be some residual damage to the myelin, meaning that6
some symptoms may linger which can cause difficulty, even if only mild.
Secondary progressive MS
Many people who start out with relapsing remitting MS later develop a
form that is known as secondary progressive MS. In secondary progressive
MS, symptoms do not go away completely after a relapse and there is an
underlying increase in disability. Not everyone with secondary progressive
MS continues to have relapses.
One study into childhood MS suggests that few people who develop MS
in childhood develop secondary progressive MS later on – those who
do may also have a slower rate of progression than people who were
diagnosed with MS in adulthood. It is difficult to give exact figures, and
even harder to make accurate predictions for individual children, but on
average perhaps 50 per cent of people whose MS started
before 16 will
7
develop secondary progressive MS after 15 years.
‘Benign’ MS
People with relapsing remitting MS who only have a small number of
relapses, followed by a complete recovery, may be described as having
benign MS. It is only possible to make a diagnosis of benign MS once
a person has experienced little or no disability for a period of 10 to 15
years. However, a diagnosis of benign MS does not mean they will be
free of problems; a relapse may occasionally occur after many years in
which the MS has been inactive. It is likely that in 10 per cent of people
with MS, the disease will follow a benign course. It is not known whether
benign MS occurs in children.
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Childhood MS – a guide for parents
© MS Society 03/08
Childhood MS – a guide for parents
© MS Society 03/08
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Primary progressive MS
Primary progressive MS tends to be diagnosed in older people, usually
in their forties or later. From the outset, those with primary progressive
MS experience steadily worsening symptoms and an increase in disability.
Symptoms may level off for a time, or may continue to worsen, often
with an absence of relapses. Approximately810 to 15 per cent of adults
with MS have the primary progressive form.
Symptoms
There are many possible symptoms of MS – few people experience
them all. At times there might be several symptoms together, at other
times there may be no outward symptoms. Children can sometimes be
remarkably adaptable, not complaining of symptoms because they have
found a way to manage despite them, or because they have noticed that
some other symptoms clear up on their own.
What does the future hold?
As mentioned already, MS is difficult to predict and varies from person
to person, so predicting exactly how it will affect each child is not
possible. Most children have relapsing remitting MS, with periods of
good, if unpredictable, recovery. Some9 children can be more severely
affected, but rapid progression is rare.
MS is not a terminal illness. Like diabetes, it’s known as a chronic or
long-term condition which needs to be managed for life. Most people
with MS live a normal life span,
with perhaps a five to 10 year reduction
10
in average life expectancy.
There are many publications from the MS Society that can help with
things as they come up. To obtain these you can either go to our website
for further information or call the information team.
There is also a wealth of information on the MS Society website on
the latest research and news.
Problems with memory and thinking are common symptoms of childhood
MS, as are problems with movement such as poor coordination and
tremor. However, MS is unpredictable and it varies from person to person.
People can have different symptoms at different times. Although some
are very common, there is no pattern that applies to everyone.
Some of the common symptoms include:
• fatigue – an overwhelming sense of tiredness making physical
or mental activity difficult
• balance problems and dizziness – walking difficulties,
problems with coordination
• visual problems – blurred or double vision, temporary loss
of sight in one eye or both
• numbness or tingling – commonly in the hands or feet
• pain – sometimes mild, sometimes severe
• loss of muscle strength and dexterity
• stiffness and spasms – tightening or rigidity in particular
muscle groups
• anxiety, depression or mood swings
• cognitive problems – difficulty with memory and concentration
• speech problems – slurring, slowing of speech,
or changes in pitch or tone
• incontinence – a lack of control over bladder or bowel functions
Some symptoms, such as walking difficulties, are obvious to other people.
Others, such as pain or fatigue, are not and are often referred to as
hidden, invisible or silent symptoms. Hidden symptoms may be more
difficult for people to understand, especially those unfamiliar with MS.
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Childhood MS – a guide for parents
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Childhood MS – a guide for parents
© MS Society 03/08
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Treating and
managing MS
There are now drugs that can modify the course of MS for some people.
Many of the symptoms can be successfully treated or managed. There
is also ongoing research into new treatments and better care. You can find
out more from the MS Society information team and Helpline.
(www.mssociety.org.uk)
Some drug treatments commonly used for MS may not be licensed
specifically for the condition. Many may not be licensed specifically for
children. However, this does not mean that they won’t be useful or that
they can’t be used for children, with careful monitoring. As with adult MS,
it can be a process of trial and error – the first drug might not be the
one that is effective, and the dose may need to be adjusted before the
right amount is found. Your GP, MS nurse or paediatric nurse will monitor
the effects the drugs are having and can alter the dosage accordingly.
Drug treatments for particular symptoms are often most effective when
combined with other approaches, such as physiotherapy or occupational
therapy (looking at how everyday activities can be done most effectively).
For more information about treatments for specific symptoms, such as
fatigue, pain, or muscle stiffness, contact the MS Society information
team. (www.mssociety.org.uk)
Children in control
When children are included in planning their own treatment, they are more
likely to get involved and stick to therapies and medications. Having choice
and a say in treatments helps anyone to feel more in control. For example,
if a child takes a disease modifying drug (see page 18 for more details)
they can be involved in the injection and preparation to give them a sense
of control. They might want to mark where the injection is given, or prepare
the medication or apply pre-medication11 cream. All this helps give
‘ownership’ of the process to the child.
As children get older they may want to become more in charge of their
care. You might monitor that medication is being taken without actually
being involved in the process. Whenever dealing with children and teens,
it is vital to be honest, present them with clear information, and allow
them to help in the decision making process. (See page 29 for more
on teenagers and MS)
Steroid therapy
Steroids are commonly used to treat an attack of neurological symptoms
– either the first episode, or later relapses. Although they do not alter the
course of the condition, steroids can reduce
the inflammation in the central
12
nervous system and speed up recovery. It is important to note that these
steroids known as ‘corticosteroids’ are not the same as ‘anabolic steroids’
sometimes used by athletes to build muscle.
A short course of high-dose intravenous steroids is as effective in
children as in adults when given during the 13course of an attack, though
the best dose to give for children will vary. Steroids do not affect the
level of recovery from an attack, so if some symptoms remain several
months later, steroid treatment is unlikely to clear these up. And
although they often speed up recovery, their effectiveness can vary.
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Childhood MS – a guide for parents
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Childhood MS – a guide for parents
© MS Society 03/08
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UK neurologists will generally choose intravenous methylprednisolone
(IVMP) (a drip that goes into the vein) as the steroid to treat severe MS
relapses. Large doses are usually given over a few days and this method
may require admission to hospital, particularly for disabling relapses.
Oral dexamethasone or prednisolone can also be prescribed. All drugs
can have unwanted effects, and steroids are no exception. These side
effects can be divided into short-term and long-term. There is some
concern over prescribing steroids in the long-term, due to possible
side effects including diabetes and osteoporosis.
Possible short-term side effects of steroids include:
• a metallic taste in the mouth
• increased heart rate
• hot flushes or a red face
• sleeping problems
• an increased need to urinate, particularly at night
• weight gain
Disease modifying drugs
Disease modifying drugs (DMDs) can affect the course of MS. They are
not a cure but they can reduce the number and severity of MS relapses.
Although much of the information and guidance for doctors on DMDs
relates to adults, these drugs can be prescribed to children and
adolescents by a neurologist. Studies have shown that the DMDs beta
14, 15
interferon and glatiramer acetate are safe to use to treat MS in children.
Children are being prescribed these drugs in the UK and, more widely,
in the USA and Canada. The MS Society publication Disease modifying
drugs is a good source of information.
These four drugs are available on the NHS to adults who meet certain
criteria, set down by the Association of British Neurologists (ABN). The
NHS has agreed to pay for the drugs for anyone who meets these criteria,
under a scheme known as the ‘Risk Sharing Scheme’. (This refers to a
financial risk for the NHS and the drug companies, rather than any doubts
about the safety of the drug.) Unfortunately one of the criteria is that
you should normally be over 18 years old to be eligible for these drugs.
This makes it difficult but not impossible to access them.
There is much discussion as to how early in the course of childhood
MS the available DMDs should be used. As it is possible to get nerve
damage at the very beginning of the condition, many neurologists believe
that treatment should begin at diagnosis or even when people present
with their very first symptoms and have an abnormal scan. DMDs
may
16
limit the progression of illness and disability in some people.
Another disease modifying drug, natalizumab (Tysabri) is not part of the
Risk Sharing Scheme, but is approved for use on the NHS for people with
‘severe, highly-active relapsing remitting MS’. Again, this is a drug that
has been tested with adults, but neurologists may be willing to prescribe
for children in certain circumstances. In Canada and the USA the decision
has been made not to use Tysabri in people under 18 years old.
Accessing DMDs in the Risk Sharing Scheme
Getting primary care trust (PCT) approval for DMDs to be used in
children with MS can be a lengthy and problematic process – and with
no guarantee of success. The ABN criteria for prescription state that
the person should normally be over 18 years old but that treatment at
a younger age can sometimes be warranted. The guidelines mainly refer
to people over 18 because there is little evidence from trials relating to
younger people. But as with any drug, individual neurologists will use
their own clinical expertise to decide whether to prescribe to people
under 18. Delays can occur where the local PCT, which pays for the
drugs on the NHS, is unaware of the ABN’s reference to children being
prescribed the drugs.
The four most common DMDs are:
Beta-interferons
Glatiramer acetate
Avonex
Copaxone
Rebif
Betaferon
They are all given by injection, at home, either under the skin or into a
muscle. Depending on which of the four drugs is used, these injections
are weekly, daily, or every two or three days. This means there is a
routine to get into for any child taking DMDs – something which they
and you will want to discuss in detail with an MS or paediatric nurse,
neurologist or paediatrician. An MS nurse will be able to help you and
your child with learning about injecting and to answer your questions.
The GP will be able to refer you to these specialists, who may be working
in partnership to help your child.
Physiotherapy and exercise
Every child can benefit from being physically fit. However MS affects
your child, there are exercises that can be of help them to stay as
healthy and fit as possible and to improve symptoms and their effects.
Exercising regularly will help keep their growing body working to its
full potential. To make it easier, it is important to find exercise that suits
them – something they enjoy and find worthwhile. All kinds of physical
movement can be of benefit. MS affects each person differently and
they will have their own likes and dislikes.
Although MS will sometimes make certain sports or activities more difficult,
children with MS should not feel they need to stop being active and rest
all the time. Of course, there will be times when they need to take it easy,
but people find their own limits and learn to listen to their own bodies.
Your child’s GP, neurologist or paediatric or MS nurse can make a referral
to a physiotherapist, who can work with you and your child to find the
best exercises for them. A physiotherapist might suggest exercises that
concentrate on a particular area of the body that they wish to improve,
or help manage a specific effect of MS.
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Childhood MS – a guide for parents
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Childhood MS – a guide for parents
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A physiotherapist can also help you find accessible sports facilities,
and suitable classes for football, netball, yoga, swimming, and a whole
range of other activities your child might enjoy. Organisations like Sport
England and Get Kids Going could give you some ideas. (See useful
organisations at the back of this booklet)
See the MS Society publication Exercise and physiotherapy
for more information.
Complementary therapies
Many people say they also get benefits from therapies which are not
prescribed by their doctor – collectively called ‘complementary therapies’
which range from herbal medicine to yoga, acupuncture and massage.
The evidence for the safety and effectiveness of complementary therapies
varies. Some have reputable national bodies which regulate therapies,
others do not. It can be hard to tell what is a safe, potentially effective
therapy and what might cause harm. It would be wise to approach
cautiously anything making grand claims for a cure or miraculous recovery.
You should always speak to a doctor or other appropriate health care
professional before going ahead with any therapy, just as you would
with a drug treatment.
See the MS Society Publication Complementary and alternative medicine
for more information.
Managing mood changes
and depression
Everyone with MS will feel down from time to time, but for some people
these lows can become more frequent or longer lasting. This is when
sadness and feeling low might be classed as ‘depression’. Depression
is very common, not just in people with MS, and there are treatments
available. If your child feels depressed, health professionals should work
with you to identify and change anything that might be making the
depression worse. They should also consider whether there might be
other related things affecting their quality of life, such as anxiety about
the diagnosis, trouble at school or fears for the future. The school nurse,
paediatric nurse or school counsellor may be a good first point of contact.
You can ask to be referred to a psychologist or psychiatrist who is used
to dealing with children. If your child loses their appetite, has trouble
sleeping, is frequently tearful and low, or has just lost interest in the
things that they used to enjoy, then consider asking for an assessment.
Antidepressant drug treatments and psychological treatments, including
talking therapies such as counselling or cognitive behaviour therapy (CBT),
for example may be recommended. If your child is feeling anxious or is
worrying to the degree that it’s affecting their normal day-to-day living
or is making them unhappy, they need to see a specialist for assessment
and help. The charity Young Minds can also give advice. Their contact
details are at the back of this booklet.
See the MS Society publication Mood, depression and emotions
for more information.
Healthy eating
A healthy diet is important for anyone. Although many special diets have
been proposed as treatments for MS, none have been proven to prevent
MS or affect the way it may develop. Special diets are best approached
with caution as some may be expensive or even harmful. Most people
do not need to use supplements either. Children can usually get the
nutrients they need through a well balanced diet. With careful planning,
perhaps with the help of a dietitian, you can make sure you meet their
dietary needs – even if they change over time. Persuading any child to
eat well, of course, may not be a simple task! Whether you have a toddler
or a teenager, here are five strategies that might help:
1 have regular family meals
2 serve a variety of healthy foods and snacks
3 be a role model by eating healthy foods yourself
4 avoid battles over food
5 involve children in the process
The Government website on eating well www.eatwell.gov.uk and the MS
Society publication Diet and nutrition have more information. Also the
Connexions website has information on health issues and healthy living
for children and teenagers. Contact details are at the back of this booklet.
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Childhood MS – A guide for parents
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Cognitive issues –
memory and thinking
What is cognition?
Cognition refers to memory and thinking. More accurately,
cognition describes the way we:
• focus, maintain and divide attention
• learn and remember new things
• think, reason and solve problems
• plan, carry out and monitor our own activities
• understand and use language
• recognise objects, assemble things together and judge distances
These skills vary naturally in different people – we all have different
strengths and weaknesses. But MS can cause problems with learning,
remembering, planning and concentrating – the medical term for this is
cognitive losses.
MS causes changes in parts of the brain and spinal cord and these can
sometimes affect a person’s memory and thinking. Thought processes
rely on messages being passed along nerves to different areas of the
brain and the lesions (scarring) caused by MS can stop or slow down
these impulses. Depression, stress, pain, tiredness and relapses can
create temporary cognitive difficulties. Some drugs may have a temporary
effect on cognition as an unwanted 17side effect. There may be alternative
drugs if side effects prove too great. Temperature can affect cognition,
particularly overheating which may worsen fatigue and as a consequence
cognitive function.
Children may be especially vulnerable to problems with cognition,
but not everyone who has MS will experience these problems. If you
have any concerns about cognitive changes in your child, talk to their
paediatric nurse, MS nurse or GP who can make appropriate referrals
and help you or your child to find the best ways to investigate the issue
and manage any difficulties.
Children who experience cognitive problems might, for example, have
difficulty recalling facts quickly, or changing concentration from one
thing to another. There are lots of ways to help compensate for these
problems. People with MS rarely have problems with other types of
memory and can remember skills (like riding a bike – things that are
‘second nature’), general knowledge or things about the past. Most
often, people with memory problems due to MS have no major difficulties
with communication and are able to carry out everyday activities. If
your child does have some cognitive symptoms, it does not mean that
they will experience all of them. Just like any other symptom of MS,
they can affect people quite differently.
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Childhood MS – a guide for parents
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Managing cognitive issues
It is important that a thorough assessment of cognitive problems is carried
out. A GP, neurologist, MS nurse or paediatric nurse can make a referral
to a psychologist. Cognitive change can get mixed up with changes in
mood – which may or may not be directly linked to MS, so a psychologist
will look at both these areas to help make sure the best solutions are
being found.
Any plans to manage cognitive issues should include the whole family
and involve the child in decision making, whatever their age. The school
and special needs coordinators should be involved, as well as educational
or paediatric clinical psychologists. Your MS or paediatric nurse will be
able to assist with specific strategies to help your child.
There are many things you can do to help your child minimise
the effects of cognitive changes.
• Help your child to relax and try to have a sense of humour
about the situation.
• Encourage your child to tell people about their difficulties. This can
help reduce the number of misunderstandings. It may also prevent
people from interpreting the behaviour as boredom or lack of interest.
• Encourage your child to be aware of their own strengths and
weaknesses, so that they can set goals and avoid failure accordingly.
• Different activities can help children to practice cognitive skills and use
different resources. There are many books and puzzles to practise with.
There are also lots of free resources on the internet of examples of games
to play with your children, which are fun for all the family. Kid’s crosswords,
word and number games are also excellent ways to practise.
• Encourage your child to recognise their limits and not be afraid
to ask for help with difficult tasks.
• Help your child to learn to recognise fatigue and try to arrange
appropriate rest breaks.
• It is important that they concentrate on one thing at a time,
for example not having the TV on when doing homework.
Memory tips
If your child has difficulty remembering things, ‘memory aids’
can be simple but effective:
• Encourage them to keep a notebook with them all the time
to jot things down.
• Get a family planner so you are modelling the use of planning
as a good strategy.
• Many schools give children daily planners to write down things that need
to be done during the day. They can also keep stuff like addresses, phone
numbers or the school timetable. If your child’s school doesn’t have
this, encourage your child to design and use their own unique planner.
• Get into a regular routine of checking their diary and the family planner,
for example at meal times.
• Use a calendar, wall planner or memo-board. Get your child to
design the wall planner – they are more likely to use it if they own it.
• Encourage them to stick post-it notes in obvious places to remind
them to do stuff, like on the fridge door or the back of the front door.
• They won’t need much encouragement to use a mobile phone or a
computer to organise and store information but they might need some
help in setting the systems up!
• Electronic organisers (PDAs) can be carried around and may be easier
than having lots of pieces of paper. They can also be set to beep to
remind them to do certain things at set times.
• They could set alarms on a watch or mobile to remind them
to do something.
• Keep a message book by the telephone.
• Make up mnemonics (pronounced ne-mon-iks). Mnemonics are rhymes,
rules or phrases to help remember things. For example ROYGBIV
(Richard of York gave battle in vain) can help to remember the colours
of the rainbow.
• Use visual imagery – make up pictures to tell a story, visualise the
information they wish to recall. For example, don’t just learn the
directions to the library, picture the route.
• Get organised. Have set places for things such as keys or scissors,
which are easily misplaced, and encourage other family members
to make sure things are put back in their correct place.
• Try to establish routines so they will have less to remember.
At home
It can sometimes be difficult to know what is a cognitive effect and what
is a normal part of growing up. Children with MS may not remember that
you have told them to do something or to go somewhere. They may not
take in all that is said to them first time, or they may understand but then
forget. Make sure that you have explained things clearly and check that
they understand. You might need to explain the same thing a number
of times. This may sound a little too simple, but sometimes these simple
adjustments can be enough to help.
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In school
Schools should make allowances for any symptoms, including cognitive
changes, if they happen. (See the chapter school, college and university
on page 32) At school they’re being asked to pay attention and study
in a fairly fast-paced environment which can have a lot of distractions.
Difficulty with memory, in processing information quickly or in focusing
on a subject might be misunderstood as being lazy, inattentive or sleepy.
Keeping the school informed can help to minimise this problem. The
cognitive issues in MS can be more difficult to deal with when they happen
in someone who is still in the learning environment of a school, where they
are constantly being compared and comparing themselves with others.
MS and the family
With friends
Keeping your child’s friends and their parents informed might be helpful.
If they are aware of the basic facts then they will feel more able to cope
with the situation and make simple adjustments such as those mentioned
above. Of course it should be up to your child how much information
they want to share with their friends. They might not want to say anything
at all. A teenager in the USA has written a book explaining her MS to
her friends, giving them answers to any questions they may have so they
won’t be afraid and be tempted to leave the child or teenager out of things
or to bully them. There is a video on you tube that was made by the
MS Society in the USA which shows teenagers at a summer camp for
teenagers with MS. They talk about how MS affects their lives and what
they do to cope. Details of how to get these and other resources are at
the back of this booklet.
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MS is a condition that affects the whole family. It can affect
communication, relationships, mood and daily interactions. Symptoms
such as extreme fatigue, weakness, bladder problems and cognitive
changes may alter the child’s ability to participate in normal childhood
activities. Children may also exhibit a range of emotions and behaviours
such as aggression, depression and anxiety as a reaction to the diagnosis.
Learning how to live with an unpredictable and changing condition can
be hard on anyone. MS will inevitably bring about changes – and everyone
in the family will be aware that things are different.
Open discussion of the family’s concerns is critical. There will inevitably
be times of greater stress, and general lack of understanding of childhood
MS can contribute to this. Additionally, MS relapses, fatigue and hospital
appointments can result in missed schooling. Other siblings may feel
resentful or jealous of the attention that the child with MS receives
and this can lead to bad behaviour from them as they try to redress the
balance. As parents, you might not always get the understanding from
friends that you need – however well meaning their intentions. Equally,
you may come across health and social care professionals who are not
aware of MS as a childhood condition. You’re not alone if you feel you
are spending a lot of time explaining the basics.
There are no firm and fast rules for the best way to deal with MS as
a family, but parents in similar situations have found the following tips
helpful to remember:
• Try to keep the lines of communication open - between everyone
in the family, and with friends and health care professionals.
• Choose a time of day when children are not tired or distracted.
• Make sure you can look them in the eye and gauge their reactions.
• Give them a conversational warning. Try “We have something
important to talk about.”
• Don’t feel you have to share all the details at once: State the basics,
then answer questions.
• It’s OK to say “I don’t know, but I’ll try to find out” to any question.
• Use basic medical terms, and explain them. Express confidence
in the doctors.
• Explain what the illness may mean to the siblings routine: Will someone
else be caring for them while you’re taking care of hospital visits and
so on.
• Check in from time to time to make sure that children understand
and feel supported.
• Inform important people in your children’s world – teachers and
babysitters, for example – so they can watch out for signs of stress.
• Allow siblings individual time with you so they don’t feel left out
or ignored.
• Use support groups for families. Talking to other parents and families
going through a similar situation may be helpful.
• There is information published by the MS Society and MS Trust which
is written specifically to explain MS to children and young people. This
is available from the MS Society information team.
• Health and social care professionals can help with caring for your child with
MS, and also with maintaining the health and well-being of the family.
Explaining things to siblings
Family members may have as many questions as your child with MS,
and some of the same concerns as you have: What will happen?; Why
us?; Will I get it?; Will things ever get back to normal?; Is it my fault?
They can also feel fear, resentment and guilt. All of these are perfectly
normal reactions, which might be more or less obvious and might surface
in different ways. To encourage your other children to ask the questions
they have, it’s a good idea to have some knowledge of the basic facts of
MS so you can answer their first questions. Perhaps you could visit the
MS Society website together, or refer to the Society’s What is MS? booklet.
The freephone MS Helpline can speak to children as well as adults about
MS and any concerns they have. A paediatric nurse or an MS nurse
may be able to help explain the condition to your other children.
Childhood MS – a guide for parents
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Some practical suggestions for explaining MS to other children:
• Remember that not every change in the family and every issue to be
tackled will be MS related. For example, moody teenagers are still moody
teenagers, whether or not they, or their brother or sister, have MS.
• It is important that you get to have time out for yourself as a parent and
respite care is sometimes available to give carers and the person with
MS a break. Details of organisations that can help are listed in the back
of this booklet.
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To open the subject, you can reassure your children that MS is not
contagious and they cannot ‘catch’ it. Many young children and teenagers
need to have those fears addressed at the very start. You can also assure
them that their brother or sister with MS can be expected to live a long
life, and that their own risk of developing MS is low.
• The MS Society Helpline is a service available to children as well as adults.
Siblings can sometimes benefit from support groups and ‘young carer’
organisations, even though they probably think of
themselves first and
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foremost as brother or sister, rather than ‘carer’. There are details of
such organisations at the back of this booklet.
Teenagers and MS
Children grow up and as a parent you may not even be aware of this
because you’re living with them every day. When they become young
adults they may need more information, and in greater detail than they
had before. Knowledge is power and it’s very important for them to
feel that they have some control over their illness.
As one teenager succinctly puts it: “MS is only one part of me, not my
complete identity, I really just want to be a normal teenager, so include
me in activities, and I’ll tell you if I can’t do something.”
After a diagnosis of MS, teenagers can withdraw from parents and not
talk much about what’s going on. They may even go into denial and just
pretend that nothing is wrong. Although it’s difficult to separate typical
adolescent turmoil from a reaction to having MS, it is possible. Listen
carefully to what your teenager says and be alert for signs of depression
or cognitive problems (memory, or attention span issues). Help your
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teenager talk about what’s bothering them. Often these conversations
happen in the car or while running errands, when teenagers might be
more likely to open up. A favourite teacher, or someone your child trusts
and respects, can also be people for your child to turn to.
It is important to try not to control what your teenager should or shouldn’t
be feeling or how they should react. Everyone is different. They may
want to cry or they might just have nothing to say on the subject.
It’s not unusual for teenagers to feel guilty or wonder what they’ve
done to deserve MS. Or they may feel relief if they’ve had unexplained
symptoms for a while – now they have an answer.
They may take some time to settle down and accept things. They may
be in denial, especially if they are in remission, but these feelings may
return if they get new symptoms or the MS gets worse.
Adapting to life with MS can take time, and in some ways is an ongoing,
life-long process, but a positive attitude from you and your child can
help to manage the condition well.
Learning to drive
Learning to drive can be a lifeline, not only in helping young people get
around more easily but as a boost to their independence. Young people
with disabilities on higher rate Disability Living Allowance (DLA) can
obtain a provisional driving license and drive a car at 16 – a year earlier
than normal. There is more information about DLA in the MS Society
publication Claiming disability living allowance. They can get advice
on what kind of car they may need at an assessment centre. If aged
between 16 and 24 and receiving the higher rate DLA, young people
may be eligible for help towards the cost of driving lessons. The charity
Motability can point them in the right direction. (See the useful
organisations section of this booklet)
Cigarettes alcohol and drugs
Like many teenagers, your daughter or son may be tempted to try
cigarettes, alcohol or illegal drugs. Teenagers and their families should
be aware that alcohol, nicotine and illegal drugs can interact with
medications used to treat MS symptoms, and these interactions are
potentially dangerous. Pharmacists can be helpful if you are worried about
possible drug interactions. You may have also heard or seen on the
internet that cannabis can help alleviate some of the symptoms of MS.
Cannabis is a Class C illegal drug. Currently it is not recognised as having
any medicinal value. Anyone found in possession of cannabis faces two
years imprisonment and/or a fine. There is an oral spray called Sativex
containing a cannabis extract produced by GW Pharmaceuticals. GPs
in the UK can prescribe Sativex on a ‘named patient’ basis for people with
MS. ‘Named patient’ means that the prescribing GP takes the decision
to prescribe it based on your individual circumstances. It is quite unusual
for it to be prescribed. More information can be found on this on the
MS Society website.
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Relationships and sex
Some young people have relationships and sex. MS may affect the way
they see themselves and this may affect their relationships, both in forming
them and in keeping them going. MS may also affect sex drive and sexual
function. Some medicines can have side effects that alter sexual function
or make the contraceptive pill less effective. It can feel embarrassing
to talk about these things, but anyone who is worried can talk in
confidence to the MS Helpline, or to a doctor or MS nurse that they
feel comfortable with.
There are support groups and online discussion boards for teenagers
which are hosted by the MS Society (www.mssociety.org.uk) under the
heading Young People in the chat forums, and also on the American
MS Society website (www.nmss.org), where they can discuss and share
experiences, chat to people of their own age and get support. Contact
details for further resources for teenagers are at the back of this booklet.
Taking care of yourselves as parents
When a child is diagnosed with MS, parents often report feeling ‘lost’.
As they disclose the diagnosis to others they often hear statements such
as, “MS does not happen in children”. There may be few opportunities
to meet and network with others in the same situation, yet establishing
a relationship with other parents is helpful in coping with the diagnosis
and growing as a family in the process. Telephone conference calls and
internet chat rooms can be useful to make links with support groups for
parents of children with long-term conditions and others living with MS.
Parents of children with chronic illnesses like MS often mourn for the loss
of the 19
healthy child and the loss of the dreams they had for their child’s
future. As a parent you will inevitably find yourself in the position of
comforter rather than comforted. However it is important as a parent
to come to terms with the complex feelings surrounding a diagnosis
of MS for your child, so take time to acknowledge how you are feeling,
to yourself and those around you. Take care of yourself as well as your
family and get the comfort that you need from a partner, friends or
family. Details of organisations that can also offer help for parents and
carers are at the back of this booklet. Get in touch with them and see
how they can support you. The MS Society Helpline is open for anyone
in the family to call, adult or child.
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School, college
and university
What issues might
my child face in school?
Having MS can disrupt schooling. You and your child will of course make
adjustments so they can continue to participate, but schools, colleges
and universities also have a duty to make ‘reasonable adjustments’ for
their students (under the Disability Discrimination Act (DDA). There is more
information on this at the MS Society website. (www.mssociety.org.uk)
Many people with MS continue study or work, with adjustments to allow
them to do this. In an educational setting, this could include extra time
for exams, if concentration becomes difficult, or perhaps the use of a
computer instead of pen and paper.
Remember that most teachers, schools and colleges will not know a great
deal about MS, so you may have to spend time explaining things to them.
It might help to involve a health care professional in these meetings,
to explain symptoms and the possible impact on your child in school.
The relapsing remitting nature of MS means that an affected child or
teenager may have unpredictable school attendance, with missed days
due not only to relapses, but also due to many scheduled medical visits
and treatments. Children may drop out of activities because of sporadic
attendance or for physical reasons. Making adjustments for your child will
involve working closely with the school, college or university to determine
what issues might be present over time.
As your child may miss out on lessons through illness or hospital
appointments, it is important to inform his or her teacher as soon as a
diagnosis has been made. The school should be understanding about
this and provide extra help if needed. Every primary and secondary school
should have a Special Educational Needs Coordinator (SENCO) who
can organise classroom assistance or any aids your child needs. Some
schools are extremely good at providing help, while with others parents
can face an uphill battle. It is no longer necessary to have a ‘statement
of special educational needs’ to obtain support in the classroom.
Organisations like the National association for special needs will be
able to give further advice and support. Contact details are in the
back of this booklet.
You may want to consider sending your child to a special school as they
may be able to get more help in smaller classes. The pupil-teacher ratio
in special schools is 6.3:1 (this compares to 22.7:1 and 17:1 in maintained
primary and secondary schools respectively). Many children are ‘dual
registered’ which means registered in both a mainstream school and a
special school. More information on this can be found at the Every Child
Matters website. (www.everychildmatters.gov.uk)
Moving from primary to secondary school also needs careful planning.
Secondary school children have to cope with more stairs, more pupils
and more moving around for lessons. It is a good idea to talk to schools
early – at the end of Year 5 or beginning of Year 6 – to make sure they
are prepared. The school’s SENCO should help. Deficits in attention and
memory are likely to have greater importance as children enter secondary
school where these skills are much more important.
Decisions for higher education may be influenced by the diagnosis.
Some teenagers choose to attend a local college, so that their medical
needs can be cared for at home.
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As well as the DDA, there are systems in place in schools to ensure that
your child can continue to get an effective, suitable education, however
MS affects them.
There may also be help with funding through the Disabled students
allowance (DSA). For more information visit www.skill.org.uk
or call 0800 328 5050.
Getting the best from health
and social care services
If you need more information about your child’s education both at
school and at university or college, please contact the MS Society
information team.
Fatigue
If your child is affected by fatigue, early mornings or late afternoon might
be worse times for concentrating or doing active things at school. They
may not have to stay at school all day – this is the kind of adjustment
that a school might make. Help them to choose a time where they will
be at their best, maybe they could choose lessons that they like most
to start with. Checking where the lessons will physically be is important.
They may be up long flights of stairs or at the end of long corridors.
Changing some classrooms could be another reasonable adjustment.
Similar adjustments can be made for other symptoms which might affect
the school day. Your paediatric or MS nurse will be able to assist your
child with fatigue management planning.
Bullying
If your child is missing alot of school, or is perceived as different, then
they may be subject to bullying. They are no different from other children
in this regard. They may be badly behaved themselves as they ‘act out’
their feelings of fear and feeling out of control, which could lead to them
bullying others. There are organisations which can help and offer further
information and advice if you need it. Contact details can be found
in the back of this booklet.
Taking medication at school
If your child needs to have access to their medication at school you
should make an appointment to talk to the head teacher about it as
soon as possible. The head teacher will be able to tell you what support
is available. This issue should be covered in the school’s health and
safety policy. If there is a need to clarify exactly what the school can
do, they may suggest drawing up a health care plan. School staff
members aren’t obliged to help your child manage their medication
(unless they are employed to do it – for example, as a health care
assistant). But those who volunteer to do so should get the proper
training. Schools are advised to consult medical professionals
on these
20
issues. Be patient if the school takes a cautious approach. You can
find guidance for schools on developing a policy on medical support
– and information on health plans – through Teachernet’s page
on ‘Managing medicines in schools’. (www.teachernet.gov.uk)
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There are many ways that health and social care services can help you
and your family, but knowing who to contact and how to access them
is not always easy. What follows is a very basic guide to a very complex
area. Local sources of information, such as your nearest MS Society
branch, Citizens Advice Bureau or other volunteer organisation can
offer further pointers about what’s available and how to get hold of it.
Many local authorities (who provide social care services) will have a
‘one stop shop’ – a single phone number to get in touch. Their number
will be listed in the local phone book. The division between services
provided by health and social services is not always fixed or clear, but
broadly speaking, social services can provide respite care, help at home
with care tasks, adaptations to the home and support for both your child
and you at home and school. The exact services provided varies from
place to place, so get in touch with your local authority to find out
what is available there. Local carers groups are often good sources
of information about what you are entitled to.
If you have any questions, problems or concerns about the health care
of your child, you can contact, in England and Northern Ireland, your
local Patient Advice and Liaison Service (PALS). They will answer queries
both from people with MS or those looking after them. The telephone
number for PALS services is normally available from a doctor’s
surgery or hospital. Issues around health care in Wales are dealt with
by Community Health Councils. In Scotland, you can find out how to
make a complaint through NHS Scotland.
You can find information on what issues you could face when your child
makes the move from paediatric care to adult services at the Department
of Health website. (www.dh.gov.uk)
See the MS Society publications Getting the best from social services,
Getting the best from social work in Scotland and A Guide to health
care services for further information.
Who is involved in
your child’s care?
There may be many different people involved from the outset, and these
may change over the years. There may be a combination of paediatric
and adult services involved. This may seem confusing but different
specialists can bring different expertise.
Your child
He or she will know the most about their own symptoms and their impact.
They will understand when regular therapies and treatments are needed
and if they are working.
You
You will know more about your child than anyone else, you will have
personal knowledge of what causes their relapses and know how
symptoms affect them mentally and physically.
Your GP
This is your first point of contact; they can supply repeat prescriptions,
help deal with some symptoms and refer to more specialist help when
it is needed. They can also liaise with an MS nurse or neurologist. They
will hold all your child’s medical records.
MS nurses
They are often brought in on a special contract to work with children
with MS – they can be a vital point of contact as they work closely
with neurologists and have an in-depth knowledge of the condition.
Paediatric nurses
They specialise in childrens’ illnesses and often work in partnership
with MS nurses.
Adult neurologists
Key in diagnosing, treating and prescribing appropriate treatment.
Paediatricians
A doctor who specialises in childrens’ illnesses can often help deal with
some symptoms. They can also refer on to therapists or psychologists.
Child psychologist
They will be a specialist in working with children with cognitive and
behavioural problems. They will have experience of dealing with children
going through difficult situations.
Child psychiatrist
They will be specialists in working with children with behavioural
and mental health problems, for example depression. They will be
able to prescribe medication and psychological ‘talking therapies’.
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Occupational therapists
They can provide practical help for problems that affect daily life at home.
for example dealing with fatigue.
Financial matters –
benefits and grants
Physiotherapists
Can give advice and offer treatment regarding mobility issues and other
physical problems.
Educational psychologists
They tackle the problems encountered by young people in education,
which may involve learning difficulties and social or emotional problems.
They regularly liaise with other professionals from the departments
of education, health and social services.
Social worker
Can give advice about other organisations and about which benefits
your family and child may be entitled to.
Voluntary organisations
Including the MS Society in the UK and in the United States and Canada
and the UK National MS Therapy Centres. There is a list of useful
organisations at the back of this booklet.
Respite care and
short-term breaks
Short-term breaks are one of parents’ most frequently reported unmet
needs. There is grant funding available from the government. Shared Care
Network is funded to promote short-term breaks and increase short-term
break carer recruitment. There are organisations which can help with
breaks, including the Shared Care Network.
(www.sharedcarenetwork.org.uk)
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Finances
Having MS in the family can have a financial impact. There may be added
costs associated with the MS. Caring responsibilities may mean that
working full time becomes more 21difficult. Parents may have to go part
time, or stop working altogether. There is financial help available.
There are several benefits that a child who is under 16 may be entitled
to, including those listed below. But it is a very complex topic and things
can change from one year to the next. Always seek local information
from an organisation such as the Citizens Advice Bureau or Jobcentre
Plus office.
See the MS Society publications Benefits and MS and Claiming disability
living allowance for more information.
Disablity Living Allowance
(DLA)
This is a tax-free benefit for children and adults who need help with
personal care or have mobility difficulties because they are physically
or mentally disabled. It is made up of two components, care and mobility.
Your child might receive either or both components, at different levels,
depending on how their MS affects them. DLA is not means tested.
You may be able to get other help for your child if they get DLA. You
may get an extra amount for your child’s disability in income support,
housing benefit, and council tax benefit or child tax credit. You may
also be able to get a blue badge for your car.
More information on benefits is available from the free advice line run by
the Department for Work and Pensions on 0800 88 22 00. There is also
a leaflet available called Disablity living allowance for children from the
DWP Disability and carer’s service. (www.dwp.gov.uk)
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Disabled Facilities Grant
(DFG)
The disabled facilities grant provides financial assistance to help with home
adaptations. It is not means tested for families with disabled children,
so your earnings and savings do not affect what you are entitled to. It
is administered by local authorities and subject to a maximum grant of
£25,000. For more information on the grant for home adaptations see
the MS Society publication Adaptations and your home. A parent’s
guide to the DFG is available from the Every child matters website.
(www.everychildmatters.gov.uk)
In Scotland; there are similar housing grants available. A booklet
available from the Scottish government (www.scotland.gov.uk) An
applicant’s guide to improvement and repair grants for private housing.
This tells you what works are eligible for grant, who can apply for a
grant, how much grant you could get, and how to apply for a grant.
The Family Fund
The Family Fund is funded by England, Northern Ireland, Scotland
and Wales. The Fund supports families of severely disabled children
under 16 with grants for items such as holidays and leisure breaks,
washing machines and tumble dryers, bedding and clothing.
MS Society grants
The MS Society, through its branches, considers grant requests to
help people affected by MS obtain funding for items they need because
of their disability, but for which they cannot get statutory help. The
MS Society provides individual grants to assist people with necessary
items such as aids and equipment, adaptations to the home or car
and top up funds for respite care breaks. You can find out more at
www.mssociety.org.uk/grants or call our grants team on 0208 438 0700.
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Improving services and
care for children with MS
Over the next five years the MS Society will invest in research specifically
directed at understanding childhood MS and developing treatments,
and encouraging other research funders to do so too. We’ll also work
with researchers to consider where there might be greater interaction
between adult and childhood MS research.
We aim to develop further resources like this publication to empower
parents of children with MS to be able to provide information to their
local school and education authority. We want to engage with the
national government’s Special Educational Needs agenda (SEN),
looking to work with the Department for Children, Schools and Families
to identify routes to inform and advise schools attended by children
with MS. We will fund one full-time posting in 2008 to provide MS
paediatric specialist nursing and consider how this role could be adapted
to incorporate training and outreach to maximise the number of children
who benefit. We will facilitate a paediatric MS network for people affected
by the condition to encourage the sharing of best practice between
health care professionals, working in collaboration with organisations
such as the British Paediatric Neurology Association. In particular we
will work to raise general awareness of childhood MS. As with everything
we do, people affected by MS are involved, so get in touch and
let us know how we can help you. Contact the information team
on 0208 438 4799, Monday to Friday, 10am-3pm.
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Further information
MS Society publications
MS Society publications
The MS Society has publications on a wide variety of topics, including
information for people newly diagnosed, types of MS, managing
relapses, and social services. For a publications list and order form visit
the website www.mssociety.org.uk or call 020 8438 0799, Monday to
Friday, 10am-3pm.
MS Society website and magazine
Keep up to date with news relating to MS with the MS Society website
www.mssociety.org.uk and members’ magazine, MS Matters. Details about
MS Matters are on the web and in the MS Society’s publications list.
MS Helpline
The award winning MS Helpline offers confidential emotional support and
information to anyone affected by MS, including family, friends, carers,
newly diagnosed or those who have lived with the condition for many
years. Information about MS is available in over 150 different languages
by speaking to a Helpline worker via an interpreter. Call freephone
0808 800 8000, Monday to Friday, 9am-9pm, except bank holidays,
or email [email protected]
MS Society National Centre, Information Centre
Based at the MS National Centre in London, the Information Centre
is equipped for visitors to read or locate books and journals or view
videos and DVDs. The Information Centre also runs an information line:
020 8438 0799, Monday to Friday, 10am-3pm, which you can call to
request publications, research articles or other information about MS.
Local information centres
There are MS Society local information and support centres in many
locations around the country. These centres are staffed by volunteers
who can help you with information about MS and services in your area.
Call 020 8438 0799 for the details of your nearest centre.
Local branches
The MS Society has a network of some 340 local branches across the
UK. The branches – run by trained volunteers – provide information
about MS and local services, a chance to meet others affected by MS
and take part in a range of activities. For more information check the
MS Society website or call 020 8438 0759.
Further reading and resources
MS Society Carers’ Handbook and MS and your life: A guide for young
carers handbook
MS A guide for families Third Edition 2006 By Rosalind. Kalb, PhD.
Published by Demos publishing
A Teenager has written a book explaining to her friends about how
MS affects her life, Dear Friend, I have MS. A Book for Friends of
Teens With Multiple Sclerosis. It is available to download at
www.pediatricmscenter.org/Elaine.aspx
Generation Now: I Won’t Let MS Beat Me
Teenagers speak frankly about what it means to live with MS.
You can view it on you tube or at www.jointhemovement.org
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An online forum for teenagers with MS based in the USA
www.msworld.org
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Useful organisations
Adviceguide
The online Citizen’s Advice Bureau service that gives you information
on a wide range of topics, including benefits, employment, debt
and legal issues. You can find your local bureau in the phone book.
www.adviceguide.org.uk
Anti Bullying Campaign
Advice line for parents and children
Telephone 020 7378 1446 (9.30am-5pm)
Advisory Centre for Education
Advice for parents and children on all school matters
Telephone 0808 800 5793
British Council for Yoga Therapy
Umbrella group for over 10 UK yoga organisations which can
provide details of member organisations and information about yoga
www.britishcouncilforyogatherapy.org.uk
The Canadian MS Society
Has excellent information for teenagers and for parents
of a child with MS
Telephone 416-922-6065
E-mail [email protected]
www.mssociety.ca
Children’s Legal Centre
Free legal advice on all aspects of the law affecting children
and young people
Telephone 01206 873820
Citizens Advice Bureau (CAB)
Can provide advice on benefits and help with filling in application forms.
To find your local office, see the telephone directory under ‘Citizens
Advice Bureau’ or the Yellow Pages under ‘Counseling and Advice’
Telephone 020 7833 2181
www.citizensadvice.org.uk
Contact a Family
Charity providing support and advice to parents of children
with any kind of disability
Telephone 0808 808 3555
Email [email protected]
www.cafamily.org.uk
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Connexions
Great Ormond Street Hospital
Offers advice on education, careers, housing, money,
health and relationships for 13-19 year olds in the UK
www.ich.ucl.ac.uk/factsheets/families/F040179/
www.connexions-direct.com
Kids Health
Ideas for healthy eating for children
Disability Information and Advice Line services (DIAL)
Run by and for disabled people giving information on benefits,
equipment mobility and more
Telephone 01302 310 123
www.dialuk.info
Disability Alliance
Information on social security benefits and tax credits
Universal House
88-94 Wentworth Street
London E1 7SA
Telephone 020 7247 8776
www.disabilityalliance.org
Disabled Living Foundation (DLF)
Free, impartial advice about all types of disability equipment
and mobility products
www.kidshealth.org
Motability
Information on mobility aids and driving
Warwick House
Roydon Road
Harlow
Essex CM19 5PX
Telephone 01279 635999
Helpline (car scheme) 0845 456 4566
Helpline (wheelchair and scooter scheme) 0845 607 6260
www.motability.co.uk
National Association for Special Educational Needs (NASEN)
Aims to promote the education, training, advancement and
development of all those with special and additional support needs
380-384 Harrow Rd
London W9 2HU
Telephone 020 7289 6111
Helpline 0845 130 9177
www.dlf.org.uk
NASEN House
4-5 Amber Business Village
Amber Close
Amington
Tamworth B77 4RP
Telephone 01827 311500
www.nasen.org.uk
The Family Fund
The National Parent Partnership Network (NPPN)
Helps families of disabled or seriously ill children under 16
They work with the Council for Disabled Children and are funded
by the Department for Education and Skills (DfES)
Unit 4
Alpha Court
Monks Cross Drive
Huntington
York YO32 9WN
Telephone 0845 130 4542
www.familyfund.org.uk
Forum of Mobility Centres
A network of 17 independent organisations covering England,
Scotland, Wales and Northern Ireland, who offer professional,
high quality information, advice and driving assessments
Telephone 0207 843 6058
www.parentpartnership.org.uk
The National Multiple Sclerosis Society USA
Keep Smyelin is an online magazine for younger readers, Teen Inside MS
an online magazine for teenagers affected by MS. Let’s Talk MS for kids
– mixes information about MS with games and quizzes. They also have
online chat and message boards.
Telephone 001-866-543-7967
Email [email protected]
www.nmss.org
Telephone 0800 559 3636
www.mobility-centres.org.uk
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Parentline Plus
Get kids going!
A registered charity that offers support to anyone
parenting a child
Ideas for sport and activities with kids
Telephone 0808 800 2222 (free)
Email [email protected]
www.parentlineplus.org.uk
RADAR (Royal Association for Disability & Rehabilitation)
12 City Forum
250 City Road
London EC1V 8AF
Telephone 020 7250 3222
www.radar.org.uk
Samaritans
10 King Charles Terrace
Sovereign Close
London E1W 3HL
Telephone 020 7481 8110
Fax 020 7481 8150
Email [email protected]
www.getkidsgoing.com
Mind
The mental health charity has specific information for children
Telephone 0845 766 0163, Monday to Friday, 9.15am-5.15pm,
or ask your doctor
www.mind.org.uk
Emotional support to anyone in distress 24 hours a day
Telephone 08457 90 90 90
Email [email protected]
www.samaritans.org
SANE
Mental health helpline
Telephone 0845 767 8000
Teens 4 MS
An organisation working alongside the National MS Society (USA) and
focusing on educating teens about what it means to live with multiple
sclerosis, and helping teens that are in any way affected by the disease
www.msworld.org
Young Persons with MS:
A Network for Families with a Child or Teen with MS
The network supports families living with a child or teenager that has
been diagnosed and offers the opportunity to connect with other families.
Parents can join an email group where they can share with other parents
their concerns and information as well as develop a support network.
They also have magazines for teenagers and children and online
chat rooms.
Telephone 001-866-543-7967
Email [email protected]
Young Minds
A mental health charity specifically for young people
www.youngminds.org.uk
The Together Trust
Disagreement resolution for parents who are in dispute with the
Local Authority over their child’s education
Telephone 0161 283 4848
www.togethertrust.org.uk
Sport England
Getting kids into sport
3rd Floor
Victoria House
Bloomsbury Square
London WC1B 4SE
Telephone 020 7273 1551
www.sportengland.org
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References
1 The International MS Journal (2004). 11, pages 36-42.
2 Compston, A. and Coles, A. (2002) Multiple Sclerosis.
The Lancet, 359, 1221-31.
3 Noseworthy, J. et al. Multiple Sclerosis. New England Journal
of Medicine (2000), 343, 938-52.
4 www.ich.ucl.ac.uk/factsheets/families/F000087/index.html.
(Date accessed February 2008).
Authors and contributors
With thanks to Dr Evangeline Wassmer, Dr Brenda Banwell, Helen Lloyd,
Dr Anita Rose, Dr Sasha Hvidsten and all the people affected by MS
who contributed to this publication.
Disclaimer: We have made every effort to ensure that the information
in this publication is correct. We do not accept liability for any errors
or omissions. The law and government regulations may change. Be sure
to seek local advice from the sources listed.
Suggestions for improvement in future editions are welcomed.
5 Diagnostic Criteria for MS (2001) (McDonald et al.)
www.bmj.com/cgi/content/full/332/7540/525/DC1.
Please send them to [email protected]
6 Renoux, C. et al. Natural History of Multiple Sclerosis with Childhood
Onset. New England Journal of Medicine, 356; 25, 2603.
Written by Sarah Westlake
Illustrations by Crescent Lodge
Design by Crescent Lodge
7 Bioko, et al. Early Onset Multiple Sclerosis, A Longitudinal Study
Neurology (2002), 59 1006-10.
8 Thompson, A. J. et al. (2000) Diagnostic Criteria for Primary Progressive
Multiple Sclerosis: a position paper. Annals of Neurology, 47, (6), 831-5.
© Multiple Sclerosis Society 2008
First edition, March 2008
9 Deryck, O. et al. (2006) Clinical Characteristics and Long Term
Prognosis in Early Onset Multiple Sclerosis. British Journal of Neurology,
253(6):720-3.
10 Compston, A. et al. McAlpine’s Multiple Sclerosis. 3rd ed
London: Churchill Livingstone (1998) p 228.
11 Chesson, R.A. et al. (2004) Counseling Children with Chronic Physical
Illness. Patient Education Council, 55; 331-338.
12 Barnes, D. (1998) Treatment of Acute Relapses. In C. P. Hawkins
and J.S. Wolinsky. (2000) Principles of Treatments in Multiple Sclerosis,
Oxford, Butterworth Heinemann.
13 Natan, G. (2003) Multiple Sclerosis in Children. Brain and Development
25, 920030; 229-232.
14 E. Waubant, et al. (2001) Interferon Beta-1a in Children with Multiple
Sclerosis is Well Tolerated. Neuropediatrics 32: 211-213 DOI:
10.1055/s-2001-17370.
15 Krupp,L. et al. (2005) Current Treatment Options Neurology
May 7(3): 191-199.
16 Jacobs, J. et al. (2004) Intramuscular Interferon B 1a for Disease
Progression in Relapsing MS, Ann Neurology 39; 285.
17 Ron, M. A. et al. (1991) Cognitive Abnormalities in Multiple Sclerosis:
a Psychometric and MRI Study. Psychological Medicine, 21, 59-68.
18 Stalker, K. and Connors, C. (2004) Children’s Perceptions of their
Disabled Siblings: She’s Different but it’s Normal for Us. Children
and Society, 18 (3).
19 MacAllister, W.S PhD. et al. (2007) The Psychosocial Consequences
of Paediatric MS. April Neurology 68 (supplement 2) S67.
20 www.direct.gov.uk (Date accessed February 2008).
21 Preventing Social Exclusion of Disabled Children and Their
Families from the Department for Education and Skills at
www.dfes.gov.uk/research/data/uploadfiles/RR782.pdf.
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Multiple Sclerosis Society
Contact information
Multiple sclerosis (MS) is the most common disabling neurological
condition affecting young adults and we estimate that around 85,000
people in the UK have MS. MS is the result of damage to myelin – the
protective sheath surrounding nerve fibres of the central nervous system.
This damage interferes with messages between the brain and other
parts of the body.
MS National Centre
372 Edgware Road
London NW2 6ND
Telephone 020 8438 0700
For some people MS is characterised by periods of relapse and remission
while, for others, it has a progressive pattern. For everyone, it makes
life unpredictable.
The MS Society is the UK’s largest charity dedicated to supporting
everyone whose life is touched by MS. It provides respite care, a
freephone MS Helpline, grants for home adaptations and mobility
aids, education and training, MS specialist nurses and a wide range
of information. Local branches cater for people of all ages and interests
and are run by people with direct experience of MS.
The MS Society also funds over 50 vital MS research projects in the UK.
Membership is open to people with MS, their families, carers,
friends and supporters. You can help the work of the MS Society by:
• becoming a member
• making a donation
MS Society Scotland
National Office
Ratho Park
88 Glasgow Road
Ratho Station
Newbridge EH28 8PP
Telephone 0131 335 4050
MS Society Northern Ireland
The Resource Centre
34 Annadale Avenue
Belfast BT7 3JJ
Telephone 028 90 802 802
MS Society Cymru Wales
Temple Court
Cathedral Road
Cardiff CF11 9HA
Telephone 029 2078 6676
• offering your time as a volunteer
MS national Helpline
Freephone 0808 800 8000
(Monday to Friday, 9am-9pm)
www.mssociety.org.uk
Registered charity 207495
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