Basics of ACTH therapy

Children with various types of childhood epilepsy that do not respond to the usual seizure medicines may be candidates for treatment with adrenocorticotropic hormone or ACTH. ACTH is a first-line treatment for infantile spasms, but it is also used in Lennox-Gastaut syndrome, Landau-Kleffner syndrome, and electrical status epilepticus in sleep. Improvement in seizure control can be seen even in the most difficult-to-control epilepsy after treatment with ACTH. The child's developmental status also may improve.

ACTH is a peptide hormone produced in the anterior pituitary gland. It is unclear just how ACTH works to stop seizures. It may work directly on the brain in addition to stimulating the adrenal glands. There is some controversy about whether to use low-dose or high-dose ACTH when treating childhood seizures. No definitive study has yet established one dose as superior.

When used in the gel form (which is given by injection), it is long-acting, so it can be given once or twice a day. Parents are taught how to give the injection so that the child can continue to live at home while receiving treatment. Injections are usually given daily for about 6 weeks.

Potential side effects of ACTH are irritability, increased appetite and weight gain, high blood pressure, low potassium in the blood, and high blood sugar. These side effects will go away once the ACTH is stopped. Other side effects are rare but more serious. These include infections, changes in mental status because of high blood pressure, and bleeding from the gastrointestinal system. The impact of these side effects can be lessened if parents are taught the early signs to look for in the child. A visiting nurse should check the child daily for the first week after the start of treatment, and twice a week thereafter. Blood pressure should be checked often.