Multiple Sclerosis affects approximately 2.5 million people worldwide, and it is estimated 2-5% of them are children.
As recently as 20 years ago, it was believed that children did not get MS and many children who had MS-like symptoms were often misdiagnosed. However, with the advent of more advanced imaging techniques, and an acceptance by neurologists and paediatricians that paediatric MS is a possibility, more and more children, (some as young as 2) are being diagnosed and it is now believed that approximately 5% of people with MS develop symptoms before the age of 16.
Paediatric MS is defined as MS in those under the age of 18. It can occur in children of any age; however it is more likely to be identified in teenagers.
Types of Multiple Sclerosis
There are three main types of MS:
The majority of children diagnosed with MS are diagnosed with Relapsing/Remitting. MS is active during a relapse and new symptoms may appear or existing symptoms may worsen. A relapse can last anything from a few days to several months. The severity can also vary. When in remission, the symptoms will ease or disappear altogether. This remission can last any length of time; sometimes for years.
Secondary Progressive (SPMS)
Over time, children with Relapsing/Remitting MS may enter a phase of the disease in which they show increasing physical disability even in the absence of attacks. Remission periods tend to become shorter in duration until they eventually become non-existent. The course of MS becomes steadily progressive.
Primary Progressive (PPMS)
This type of MS is very rare in children and tends to occur in those who are diagnosed later in life. With Primary Progressive MS, the disease begins with a slow progression of symptoms which gradually worsen over time with no noticeable remission.
Is it Multiple Sclerosis ?
When a young person exhibits MS-type symptoms, it does not necessarily mean MS. These symptoms could also indicate some other condition such as those listed below:
Acute disseminated encephalomyelitis (ADEM)
It is not unusual for children to have single neurological events known as acute disseminated encephalomyelitis (ADEM). ADEM most often follows an event of some sort e.g. a viral illness, vaccination or adverse reaction to medication. While some of the symptoms of ADEM are similar to MS e.g. optic neuritis, difficulty with balance or strength, other symptoms are quite different.
A young person with ADEM is more likely to have a fever, headache and nausea before the neurological symptoms appear. They may also become very irritable, sleepy or have a seizure. ADEM is much more common than MS in childhood and only approximately 10% of ADEM patients develop MS.
Optic Neuritis is an inflammation of optic nerve commonly caused by damage to the Myelin (the protective tissue which covers the cells of the central nervous system).
However this is a condition in its own right and may not be due to MS. Symptoms include blurred vision, complete or partial blindness and pain.
Transverse Myelitis (TM)
TM is an inflammation on the spinal cord. Symptoms can include a loss of strength and sensation of the limbs and difficulty with bowel and bladder control.
Lupus is a disease of the immune system. Like MS, the immune system gets confused and begins to attack itself. With Lupus, however, this causes the blood stream to have too many antibodies, which leads to inflammation and damage in the joints, muscles and other areas. Some symptoms of Lupus are similar to MS. These include extreme fatigue, weakness, joint and muscle aches and pains.
Clinically Isolated Syndrome (CIS)
CIS is a first episode of neurological symptoms, which last at least 24 hours. These symptoms are caused by myelin damage. However, this does not always lead to MS. Some people who have Clinically Isolated Syndrome go on to have no further problems. In fact there is a less than 50% risk of developing MS within 5 years of CIS.
Symptoms of Multiple Sclerosis
MS can cause a long list of symptoms and it is extremely unlikely that any one person would experience all of these. Most will only experience a small number of symptoms. Common symptoms of MS include:
Fatigue an overwhelming tiredness that can make physical or mental activity difficult.
Optic Neuritis visual disturbances that can include loss of vision in one eye, blurred or double vision.
Weakness of limbs
Balance problems or dizziness
Numbness or pins and needles
Stiffness or spasms tightening or rigidity in particular muscle groups.
Cognitive problems difficulty with memory and concentration
Speech problems slurring or slowing or speech
Diagnosis of Paediatric Multiple Sclerosis
Children are very difficult to diagnose because the child may not complain or report symptoms. A neurologist will look at the childs medical history and examine them. It is likely that they will then undergo a number of tests which may include:
Magnetic Resonance Imaging (MRI) Scan this will identify any areas of the brain or spinal cord that may have scarring.
Lumbar Puncture a lumbar puncture (also known as a spinal tap) is used to take a sample of spinal fluid to test for abnormalities.
Evoked Potentials simple tests that measure the time it takes for the nerves to respond to electrical stimulation.
A positive diagnosis can take some time and these tests are not always conclusive.
There are several drug therapies available. A child may be treated with disease modifying drugs (DMDs). Whilst DMDs are not a cure, they can reduce the severity and frequency of relapses.
Many people with Multiple Sclerosis have benefitted from complementary and alternative therapies. Sometimes the improvement is dramatic, sometimes less so. However in the majority of cases, people generally feel better. There are a number of therapeutic approaches that are available which are suitable for children:
Massage (including Aromatherapy)
Massage is the oldest therapy and has been used for thousands of years. It is used to help ease stiffness in muscles and joints, relieve pain, improve blood and lymph circulation and increase well-being. It has been found that massage lowers anxiety and depression, raises self esteem and gives a general sense of well being.
Various forms of massage can be beneficial to those with MS. For example:
Fragrant essential oils which have a positive effect on body and mind are used together with massage to help you feel relaxed or energised. The essential oils are able to penetrate the skin and enter the bloodstream. An aromatherapy massage can help relax the whole body, improve circulation and help reduce swellings and pain. Not all oils are suitable for children however so it is always advisable that you see a professional aromatherapist.
Manual Lymphatic Drainage
A very gentle massage which helps to drain blocked wastes, remove toxins and keep unused muscles in tone by stimulating lymphatic drainage.
Reflexology is a complementary therapy where gentle pressure is applied to specific areas of the feet or hands, pressing what are know as reflex points which encourage the body to heal itself naturally. By working on these points, blockages can be released to help restore the free flow of energy around the body. Tension can also be eased and circulation improved.
HDOT (High Dose Oxygen Therapy)
HDOT involves breathing pure oxygen while under increased air pressure. Many people find relief from their symptoms and it is thought it can help slow the progression of the disease. There are centres around the country who offer the treatment and children with many different conditions have used Oxygen Therapy and found it to be effective, especially in improving symptoms such as poor balance, fatigue, mobility problems, incontinence and speech problems. Many people benefit from a reduction in the severity of symptoms and improved quality of life
Some research suggests that there is a link between MS and Vitamin D deficiency. A recent study has found that lower levels of vitamin D3 are linked to a substantially increased subsequent relapse rate in childhood MS. It is important Vitamin D3 is taken and not D2. This is because D3 is the natural form and not a synthetic supplement. It is recommended that children take a Vitamin D3 supplement of 1000iu daily.
However, exposure to ultraviolet B (UVB) radiation in sunlight is the most effective way to boost Vitamin D supply and as little as 15 minutes in the sun a day will increase levels without increasing the risk of cancer. Below is an extract from a recent consensus statement released by a number of societies including Cancer Research UK:
“This consensus statement represents the unified views of the British Association of Dermatologists, Cancer Research UK, Diabetes UK, the Multiple Sclerosis Society, the National Heart Forum, the National Osteoporosis Society and the Primary Care Dermatology Society.
Vitamin D is essential for good bone health and for most people sunlight is the most important source of vitamin D. The time required to make sufficient vitamin D varies according to a number of environmental, physical and personal factors, but is typically short and less than the amount of time needed for skin to redden and burn. Enjoying the sun safely, while taking care not to burn, can help to provide the benefits of vitamin D without unduly raising the risk of skin cancer.
Vitamin D supplements and specific foods can help to maintain sufficient levels of vitamin D, particularly in people at risk of deficiency. However, there is still a lot of uncertainty around what levels qualify as optimal or sufficient, how much sunlight different people need to achieve a given level of vitamin D, whether vitamin D protects against chronic diseases such as cancer, heart disease and diabetes, and the benefits and risks of widespread supplementation.
Should I tell my child they have Multiple Sclerosis ?
Parents sometimes wonder if they should tell their child or teen about the MS diagnosis. There are some very good reasons for talking about the diagnosis openly with your child:
Your child will know when they dont feel well. They are also likely to notice their parents moods and state of mind. Without an honest explanation of what is happening, they will use their own imaginations to work out what is going on and what your child can imagine is almost always worse than the reality.
Many children, particularly the younger ones, dont have the vocabulary or concepts they need to voice their concerns or ask questions. By talking openly with your child about MS, you are helping your child understand the words and terminology, enabling them to say what is on their minds, as well as letting them know it is ok to say it!
If your child has MS, they are going to have ongoing relationships with lots of different healthcare professionals. They are going to be undergoing periodic medical examinations, evaluations and tests of various kinds. Open, comfortable communication with these professionals, geared to your childs age and level of understanding, will promote a trusting relationship and help make these experiences less frightening for your child.
By including your child in decisions about their care and in their own treatment planning, they are more likely to willingly take any medication and other therapies that are recommended for them, making the whole process less stressful for you both.
Emotional Impact of an Multiple Sclerosis Diagnosis
A diagnosis of MS can be very scary for a child and it will have an emotional impact not only on them but on the whole family. How a child will react to the diagnosis will depend on their age and the child themselves. A child will often take cues from their parents reactions if you are upset, they will be too.
Young children are often unable to describe how they feel and may need your help to express what they are feeling and subsequently help them deal with those feelings. You can help them by listening to your child and helping them to talk about what is on their mind. The old saying a problem shared is a problem halved is true and your child will often feel better once you have discussed their concerns and reassured them. You can help them to cope with the diagnosis by sharing appropriate information about their condition with them and answer any questions they may have. Keep an eye out for signs of stress these can include reluctance to go to school, aggressiveness or regressive behaviour, such as thumb sucking or bedwetting, when your child has grown out of these habits for some time.
Teenagers react in a similar way to children and they too need the truth about what is going on. Older teens may have a greater understanding of the implications of MS and as such may fear the future a bit more. Honest communication, support and love will help them to cope through diagnosis and beyond.
Dont forget Siblings!
Siblings can be affected too. They may be feeling a rollercoaster of emotions fear, anger, sadness or even guilt. Some siblings can feel resentment towards their brother/sister and towards MS. They may feel like they are losing their parents attention and then feel guilty about the resentment. Try to answer any questions they have in an appropriate manner for their age and include them in conversations.
Although it may be difficult, try to spend some special time with your other children doing something that has nothing to do with MS it may help you as well as them!
Your feelings as a parent will be similar to those of your children; however they may be intensified, as adults have a greater knowledge and understanding of the situation. You are probably feeling scared, angry, sad, concerned and guilty and these are all normal feelings to have. Please remember that we humans are incredibly resilient and that many families pull together in times of extreme stress and become stronger as a unit.
MS does not need to be as devastating a diagnosis as it may first seem. Living with MS can be very challenging, scary and tiring. However research into the condition is ongoing with new developments and treatments emerging all the time and we live in hope that one day a cure will be found. In the meantime, if your child has access to the right treatments and support from both their family and healthcare professionals, there is no reason why they cannot still live a happy and fulfilling life.