Your GP should be your first and best contact in terms of managing your child’s M.E. on a regular basis. Hopefully you will have a GP who understands M.E. but some GPs lack experience in dealing with this complex illness, particularly in children. If this is the case you could ask if there is another GP within the practice, or a nurse or other healthcare professional, who has an interest in M.E.
After 3 months your GP should refer your child to a general paediatrician. After a further three months, unless your child is improving a referral should be made to a specialist M.E. paediatrician. All children should be under the care of a paediatrician, even if this has to be someone at a distance, to whom your GP can refer for advice and guidance. They will also confirm the diagnosis, co-ordinate care and help with any educational and social issues that arise.
Doctors you might come into contact with include:
We hear from parents about other health professionals who lack knowledge and understanding of the condition and pressure the family and young people to push themselves beyond their capabilities. If you find yourself in this position please contact our Information and Support officers on 0117 927 9551.
Other healthcare professionals may need to get involved in your child’s care. This will depend on the extent and stage of their illness and circumstances and may include occupational therapists, physiotherapists, social workers, nurses and dietitians.
Every parent wants their child to get better as soon as possible but it’s important to have realistic expectations about your child’s M.E. Setting realistic short term goals with your GP, paediatrician or other professionals is an important aspect of managing the condition.
Don’t be afraid to ask any of the doctors you see to explain anything you don’t understand. It can be difficult to take everything in at once, particularly if you knew nothing about M.E. before your child became unwell. Many people find it helpful to keep a list of their symptoms which they can then take to their GP to save them having to try and remember them all – your child may find it helpful to do this, with your support.
Always ask your child in advance of appointments if they have any questions about their illness that they want to ask. Where possible enable them to ask their own questions if health and maturity allow. Remember, with M.E. it can be difficult for your child to think on the spot, so allow them time to respond.
Many people try different approaches to help them manage their illness and their symptoms. Most private practitioners and complementary therapists are competent, ethical and caring. Unfortunately, we also hear of practitioners who promise "cures," charge excessively for treatments and even cause harm their patients. If you are considering treatment with a private doctor who operates outside the NHS or a complementary therapist, we recommend that you:
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