Treatment of ME/CFS in Children

Some children and adolescents with ME/CFS might also have symptoms of orthostatic intolerance that are triggered when-or made worse by-standing or sitting upright. These symptoms can include:

• Frequent dizziness and lightheadedness
• Changes in vision (blurred vision, seeing white or black spots)
• Weakness
• Feeling like your heart is beating too fast or too hard, fluttering, or skipping a beat

For patients with these symptoms, their doctor will check their heart rate and blood pressure, and may recommend they see a specialist, like a cardiologist or neurologist.

For children with ME/CFS who do not have heart or blood vessel disease, their doctor might suggest patients increase daily fluid and salt intake and use support stockings. If symptoms do not improve, prescription medication can be considered.

Good sleep habits are important for all people, including those with ME/CFS. Some common tips for good sleep are:

• Start a regular bedtime routine with a long, calming wind-down period.
• Go to bed at the same time each night and wake up at the same time each morning.
• Limit daytime naps to 30 minutes in total during the day.
• Remove all TVs, computers, phones, and gadgets from bedroom.
• Use the bed only for sleep and not for other activities (avoid reading, watching TV, listening to music, or using phones).
• Control noise, light, and temperature.
• Avoid caffeine and large meals before bedtime.
• Avoid exercise right before going to bed. Light exercise and stretching earlier in the day, at least four hours before bedtime, might improve sleep.

When children try these techniques but are still unable to sleep, their doctor might recommend taking medicine to help with sleep.

Children might continue to feel unrefreshed even after the medications help them to get a full night of sleep. If so, they should consider seeing a sleep specialist. Most people with sleep disorders, like sleep apnea (brief pause in breathing during sleep) and narcolepsy (uncontrollable sleeping), respond to therapy. However, for children with ME/CFS, not all symptoms may go away.

Children with ME/CFS may have problems paying attention, thinking, remembering, and responding. For instance, after becoming ill it may be hard for children to take notes and listen to their teacher at the same time.

For children with ME/CFS who have concentration problems, some doctors have prescribed stimulant medications, like those typically used to treat Attention-Deficit / Hyperactivity Disorder (ADHD). While stimulants might help improve concentration for some patients with ME/CFS, they might lead to the “push-and-crash” cycle and worsen symptoms. “Push-and-crash” cycles are when someone with ME/CFS is having a good day and tries to push to do more than they would normally attempt (do too much, crash, rest, start to feel a little better, do too much once again).

Adjusting to any chronic illness can sometimes lead to symptoms of depression and anxiety. Anxiety in children with ME/CFS is not caused by the illness itself. It can happen because of the changes the child must make to live with the illness. When healthcare providers are concerned about a patient’s psychological condition, they may recommend seeing a mental health professional.

Counseling may help to reduce stress and some symptoms of depression and anxiety, like sleep problems and headaches. Some children might benefit from antidepressants and anti-anxiety medications. However, doctors should use caution in prescribing these medications. Some drugs used to treat depression have other effects that might worsen other ME/CFS symptoms and cause side effects.

Some children with ME/CFS might benefit from trying techniques like deep breathing and muscle relaxation, massage, and movement therapies (like stretching, yoga, and tai chi). These can reduce stress and anxiety, and promote a sense of well-being.

Although treating depression and anxiety can ease mental and emotional distress in some patients and can be very beneficial, it is not a cure for ME/CFS.

Children with ME/CFS often have headaches and stomach pains. Doctors may want to check for food allergies and vision problems.

Gentle massage and heat may relieve pain for some patients. Parents/guardians should always talk to their child’s healthcare provider before trying any medication. Doctors may recommend trying over-the-counter pain-relievers, like acetaminophen or ibuprofen.

For patients with ME/CFS, it is important to find a balance between inactivity and excessive activity, which can make symptoms worse. This means a new way of thinking about daily activities. For example, daily chores and school activities may need to be broken down into smaller steps.
A symptom diary can be very helpful for managing ME/CFS. Keeping daily track of how patients feel and what patients do may help to find ways to make activities easier.

Parents/guardians and doctors of children with ME/CFS can work with teachers and school administrators to adjust the school load for children with ME/CFS. While it is true that exercise can benefit children with certain chronic illnesses, children with ME/CFS should avoid activity that makes their symptoms worse.