Young children and teenagers can also get ME (cfs) and the symptoms resemble those of adults. The same principle of illness management apply, including work and play within energy levels to help conserve energy, and plenty of physical and mental rest, rest, rest.
Find a doctor /specialist and other practitioners, preferably knowledgeable in ME (cfs) to diagnose, provide appropriate advice and support in the management of the illness.
Keep a copy of a written note from the doctor/specialist confirming the diagnosis and implications for daily living. The ability to produce a letter verifying the illness will help reduce unnecessary stress for you and your child when needing to explain long absences from school attendance and other obligations. Keep extra copies for future use.
When making a first visit to a doctor/specialist and other practitioners, take with you and hand out a copy of:
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners – An Overview of the Canadian Concensus Document by Bruce M. Carruthers & Marjorie I. van de Sande
By doing this you will help raise awareness of ME (cfs), and also the information in this booklet provides a framework to help guide discussion about illness management for your child during consultations.
Copies of this booklet are available from ME/CFS Australia (Victoria).
Telephone: (03) 9888 8991
Enlist the co-operation of your child and emphasise the need to work together to manage the illness on a day to day basis.
Professional counselling from a health practitioner knowledgeable in ME (cfs) may be required as some children have difficulty understanding and accepting the limitations the illness imposes on their life.
Provide support, understanding, and help, in dealing with everyday issues.
Ensure adequate rest, alternating with periods of physical and mental stimulation (refer section on Energy Management).
Encourage participation in hobbies and leisure activities such as crafts, collecting, card games, crosswords, photography (refer section on Activities for the Inactive).
Encourage and maintain relationships with friends to prevent social isolation. Keep in touch with friends by visits, letter and card writing, telephone, and email (refer section on Activities for the Inactive).
Contact individual State ME/CFS Societies for information on support lines, support groups, email pen friends, and chat groups for the under 25 years. Refer resources section for contact details.
A lack of appetite at meal times can be a concern, especially during developing and growing years. Try offering smaller quantities of food, soup, drink, and water frequently throughout the day, or whenever food and drink can be tolerated.
A well balanced diet consisting of a variety of freshly prepared and nutrient dense ingredients to provide a maximum support to the body.
Absence from school is always a concern for parents/carers. Ongoing communication with teachers, tutors, course co-ordinators, and principals will be required.
Arrange a meeting with the school principal to discuss issues affecting your child’s education. Some of the options worth considering include the following:
- eligibility for special consideration application
- distance education
- private tutoring, or school arranged tutoring
- access to children’s disability programs