MS is a life long condition. At present, there is no cure for MS but there are good options to manage it well. This will usually involve a combination of medical treatment and following a healthy lifestyle.
There are three aspects of treatment in MS.
Some drugs are for treating relapses, which might happen from time to time.
Some drugs are for treating the underlying condition of MS.
Some drugs and treatments are for the symptoms that you live with day to day.
You could see a number of different health professionals in order to receive treatment for your MS. Normally in the UK, children with MS and similar conditions are looked after by a specialist team consisting of a range of experts in childhood (paediatric) neurological conditions.
A paediatric neurologist will oversee your treatment, make recommendations about what drugs are appropriate, and review your progress. A paediatric MS Nurse will help explain the treatment you are having, and how to take it, monitor how well you are getting on and put you in touch with other professionals who could also help you. Your MS Nurse is usually your first point of contact if anything changes with your MS. You may also see a paediatric neuro-psychologist, who can help you with any problems you are having with thinking, memory and mood.
You and your family should be able to discuss any queries about your treatment or about how MS is affecting you with your health team. Your views about treatment, side effects and risks are very important, and will be taken seriously.
To get the most from your consultation with a GP, neurologist, MS nurse or other health professional, it helps to go prepared with questions to ask and an idea of the sort of information you'd like to know.
Treating MS relapses in children
A relapse is a worsening of your MS symptoms, or the appearance of a new MS symptom. If you get a cold or other infection, or if you are tired, stressed, or hot, then you might feel that your MS is worse, and think that you are having a relapse. It might not be a relapse after all.
It is always sensible to talk to your MS Nurse straight away if your MS changes or gets worse. She or he can help you work out what has caused your MS symptoms to worsen, and get you the right treatment and advice.
Sometimes a relapse is treated with a short course of steroids, either as a pill or through a drip in hospital. Steroid treatment usually only takes a few days. This calms down your immune system and can speed up your recovery. However, the amount of recovery will be the same with or without steroid treatment. Steroid treatment does not treat the underlying MS, just the symptoms associated with the relapse.
Disease modifying drugs for children with MS
Disease modifying drugs (DMDs) do not normally affect your symptoms, but they treat the underlying MS. DMDs aim to reduce the number and severity of relapses that you might have, and slow down the build up of disability over time. Thirty years ago, there were no disease modifying drugs for MS, but now there are several available, and more are being researched. The evidence suggests that taking an effective DMD early on will give you the best chance of living well and staying healthy with MS.
Several DMDs are licensed for use in adults in the UK, and some are now available for young people too. Each of the drugs has different characteristics. Some are pills, some are injections, and some involve having an infusion or drip in hospital. Each drug has to have undergone extensive research trials before they can be used in MS. The drugs work in different ways, and have different side effects and risks associated with them. You might find that you get on better with some than others.
Choosing to take a DMD is generally a long term decision, and you may need to be prepared to take the drug for several years at least. It is important that the drug is taken as recommended by the doctor and that doses are not missed.
You will be monitored with blood tests and MRI scans from time to time, to see how you are getting on with that DMD, and to check that it is effective for you. If your MS is not well managed on one drug, your neurologist may recommend switching to another drug. It can take six months or longer to be able to tell if the drug is working well, and you may continue to have relapses in the meantime.
If you have MS, you might feel well in between relapses, or you might have some symptoms that don't completely go away. Some symptoms might be due to your MS, and some symptoms might be side effects from other medications you are taking. Your MS team can give you treatment and advice to help manage these symptoms.
The appropriate treatment for MS symptoms in children won't always be more medication. For symptoms like fatigue, anxiety, low mood, or problems with mobility or balance, you might be offered sessions with some other health professionals.
Neuropsychologists will be able to help you with memory, planning or learning problems
Occupational therapists can help you learn how to manage and improve fatigue
Physiotherapists can help you with exercises to improve your balance, strength or mobility
Counsellors or psychologists can help you deal with difficult feelings around life with MS.
All of them should be able to liaise with your school and suggest ways to avoid MS having a big impact on your education and general life.
It is up to you to take any medications that you have been prescribed and not miss any doses. As well as your medication, you should also do what you can to stay healthy. Being generally fit and well will mean that MS symptoms are less troublesome for you, and that you are likely to recover quickly if you have a relapse. A healthy lifestyle means eating a balanced diet, drinking enough water, getting some exercise every week, and getting enough sleep. You should also try to reduce the stress in your life, by making sure you continue to do things that you enjoy, staying involved with your family, friends and school activities, and talking over any worries with a trusted adult.
MS should not mean that you have to give up hobbies, friends or your plans for the future. You may need to think creatively to be able to find solutions to the problems that MS might cause, but your MS team will be able to support you in your goals.
One of the most common symptoms of MS is fatigue, which is very different to the tiredness people without MS may have. In this video you can get some ideas around how you can try to reduce your fatigue.
