Adrenocorticotropic Hormone (ACTH)

Important information:

• ACTH is a hormone produced naturally by the body.  When a small amount of extra ACTH is given for a set amount of time, it can control certain types of seizures.

• ACTH is a gel that is injected into your child’s muscle. The injection can be given in your child’s thigh or arm. We will teach you how to give the injection to your child.

• ACTH must be preauthorized by your insurance company. This will be coordinated by the ordering healthcare provider. Once authorized, you must obtain the ACTH through a specialty pharmacy that is selected by your insurance carrier. The medication will be ordered and delivered to your home, your healthcare provider's office, or another address of your choice.

• ACTH will be shipped by the pharmacy in a container with dry ice to keep it at 36-46ºF. Once you receive the medication, you must refrigerate it.   

• Below are some common and expected side effects of ACTH. These are usually temporary and get better after the ACTH is stopped. 

  • Puffiness of the face

  • Weight gain

  • Increased appetite

  • Irritability

  • Acne

• Less common side effects include: 

  • Blood in the stool

  • Increased blood pressure

  • Increased blood sugar

Patient instructions:

• Always keep the medicine refrigerated. Do not store ACTH on the door of the refrigerator, as the temperature is usually warmer there. If you are traveling, keep the medication in a cooler pack.

• The injection should be given at the same time each morning between 7:00-10:00 a.m.

• Always wash your hands before giving the medicine.

• It is helpful to have a second person available to help you when giving the injection.

• Make a follow-up appointment for your child 2 weeks after starting the injections, unless instructed otherwise.

• Please notify your healthcare provider if your child experiences any of the side effects described above.   

• Do not stop giving ACTH unless your healthcare provider tells you to do so! Stopping ACTH suddenly can cause severe health problems. 

Monitoring

To monitor your child for potential side effects, you will need to take your child’s blood pressure weekly. This can be done at your primary care provider’s office. Call the neurology team if their blood pressure is high. Your team will tell you what is considered high blood pressure for your child.

Decreasing the risk of infections

Your child is at increased risk for infections while taking ACTH.

• Avoid crowded places such as daycare centers or malls during the first month of treatment, if possible. In addition, try to keep your child away from other children who are sick. If your child shows signs of illness such as a fever, please notify your healthcare provider.

• Your child should not receive any immunizations during treatment with ACTH. Your child can receive immunizations when the ACTH is stopped. You can discuss an immunization plan with your primary care provider.   

• Your team may prescribe an antacid and an antibiotic to minimize the risk of stomach ulcers and infections. Do not stop these medications until advised to do so. 

Call your CHOP healthcare provider with questions, concerns or if: 

• Your child has any of the side effects mentioned above.

• Your child’s seizures increase in number, severity, or length of time.

• You missed a dose or gave the wrong dose of ACTH to your child.

Reviewed December 2024 by Susan Melamed, CRNP and Rachael Huber, PA-C.