In this ongoing five-blog series about managing CFS in children and teens, I regret that the treatment section will be the shortest! While CFS research is being done on many fronts, much about this disease remains elusive. Even the most promising treatments have only been marginally effective for a relatively small percent of patients. The good news is that many children and teens with CFS show gradual improvement over time. However, a relapsing and remitting pattern–triggered by over-exertion, infectious illnesses, or seasonal changes–is more common. Even “recovered” patients find that they need more rest than their peers.
The mainstay of CFS treatment focuses on managing limited energy reserves; eliminating unnecessary or excessively stressful activities; getting adequate rest, nutrition and hydration; and treating symptoms. Many patients benefit from lifestyle and nutritional counseling, sleep studies or medication, support groups, and cognitive behavioral therapy (CBT). A closely supervised, mild, graduated exercise program with caution to increase exercise by no more than 1 minute per day is often helpful.
As parents, we find that viewing Brian’s health as a chemistry experiment is sometimes helpful: if we maintain homeostasis with respect to all the variables, he does fine. However, if any one of those variables changes—including those that are not in our control or his (such as changes in the weather or a new infection)—it can trigger a CFS “relapse” or exacerbation.
While there is no specific FDA-approved medication to treat CFS, several medications have helped patients with CFS: medications to facilitate sleep, to treat headache, to increase blood pressure, to treat digestive problems, to manage pain, and to increase appetite. Fluid and salt-loading may help patients with associated postural hypotension. Antidepressants have helped both to treat secondary depression as well as to facilitate sleep and decrease pain. When administering any medications to kids and teens with CFS, special attention must be given to the fact that most prescription medicines have not been specifically tested on children with CFS and the fact that most patients with CFS are sensitive to much smaller doses of medicines that other people their size or age.
With Brian, we tried just about everything. What worked? A medicine to increase his appetite (Periactin); an older medicine to treat headaches whose side-effects were sleepiness and weight gain (Doxepin); an antidepressant (Lexapro) and supportive therapy. We also gave him a daily multivitamin, Life’s DHA (a DHA supplement), probiotics (for his GI symptoms), and melatonin for sleep (0.5 mg). During a time when he couldn’t tolerate milk products, we also gave him calcium supplements.
Among alternative therapies, yoga, tai chi, acupuncture, massage, and biofeedback therapies have been reported to be helpful, as may be a new device, KFH Energy, FDA approved to alleviate fatigue and pain. This hand-held device uses a form of micro current electrotherapy called Bio-Electric Stimulation Therapy (BEST).
Brian tried KFH Energy, which may have helped more if he was more willing to use it daily. Unfortunately, we didn’t know about this therapy until 3 years into his illness. When Brian was most incapacitated, we started him playing ping pong sitting in a chair. Now he has become a fairly advanced table tennis player. When he got a little stronger, we got him a punching bag, both to take out his frustrations and to get a little exercise. Video games were the mainstay of his entertainment; we also used “Dance, Dance Revolution” successfully as a part of his physical therapy. When he became strong enough, he was able to undergo regular physical therapy 2-3 times per week. This was extremely helpful in regaining his strength, flexibility, and muscle tone after months of being completely sedentary. Mild swimming and water play were also helpful.
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