Share Your Story

If your child has been treated with Acthar for IS and you are willing to share your experience, please contact us and let us know your story.

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Understanding Infantile Spasms

Learn more about infantile spasms from diagnosis to treatment.

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Medication Guide

Before administering Acthar to your child, please read the full Medication Guide.

Download the Medication Guide here

IS Parent & Caregiver Resources

There are several organizations and online resources that provide information about Infantile Spasms or related topics. The organizations listed below provide the latest research news for children with IS and some offer support groups for parents and caregivers.

Parents and caregivers should discuss the medical information they get from online communities with their child’s doctor to make sure the information is correct.

IS Resources & Support Services

Child Neurology Foundation (CNF)
The Child Neurology Foundation is the outreach arm of the Child Neurology Society, providing information, education, and advocacy for child neurologists and other medical professionals—and for patients, parents, and member groups dealing with an array of neurologic conditions.

In 2009, the Child Neurology Foundation proudly announced the creation of Infantile Spasms Awareness Week, which occurs yearly in October. The goal of IS Awareness Week is to provide pediatricians, child neurologists, parents, and caregivers with objective educational tools to increase awareness and understanding of infantile spasms. Early and aggressive treatment can impact the prognosis of infants diagnosed with IS. This important educational initiative will help to ensure that physicians have an increased awareness and understanding of IS. It will also make much needed educational materials available to the parents and caregivers of afflicted infants.

Child Neurology Foundation
Understanding Infantile Spasms, an educational resource developed by CNF
Child Neurology Society

Epilepsy.com
Epilepsy.com is a dynamic online resource providing in-depth information and community for people living with epilepsy, and is the home of the Epilepsy Therapy Project. The mission of epilepsy.com is to inform and empower patients and families facing newly diagnosed epilepsy or those struggling with epilepsy that has resisted treatment.

Epilepsy.com
Epilepsy Therapy Project

Epilepsy Foundation of America (EFA)
This is a national voluntary agency solely dedicated to the welfare of the more than 3 million people with epilepsy in the United States and their families. This group aims to ensure that people with seizures are able to participate in all life experiences; to improve how people with epilepsy are perceived, accepted, and valued in society; and to promote research for a cure. Epilepsy clients throughout the United States are served by more than 50 Epilepsy Foundation affiliates around the country.

Epilepsy Foundation

National Organization for Rare Disorders (NORD)
The National Organization for Rare Disorders is a not-for-profit federation of voluntary health organizations dedicated to helping people with rare orphan diseases and assisting the organizations that serve them.

National Organization for Rare Disorders

Tuberous Sclerosis Alliance (TS Alliance)
The Tuberous Sclerosis Alliance, the only national voluntary health organization for the genetic disorder known as tuberous sclerosis complex (TSC), is a membership-based organization; members have voting privileges at the organization's annual meeting. It is also the lead organization for the funding of medical research related to TSC. Such medical research has included the breakthrough discovery of two genes (TSC1 and TSC2) that are known to cause the disorder.

Tuberous Sclerosis Alliance

Questcor

Uses

H.P. Acthar^® Gel (repository corticotropin injection) is an adrenocorticotropic hormone (ACTH) analogue used for:

Monotherapy treatment of infantile spasms (IS) in infants and children under 2 years of age.
The treatment of exacerbations of multiple sclerosis in adults.
For inducing a diuresis or a remission of proteinuria in the nephrotic syndrome without uremia of the idiopathic type or that due to lupus erythematosus.
The following: rheumatic disorders; collagen diseases; dermatologic diseases; allergic states; ophthalmic diseases and respiratory diseases.

Important Safety Information

Patients, parents, and caregivers should be aware of the important information about H.P. Acthar^® Gel. A Medication Guide is also available for parents and caregivers of patients with IS. Please read the Medication Guide before your child receives Acthar.

Acthar should never be given intravenously (into a vein). Acthar should not be used in patients with a skin condition called scleroderma, bone density loss (osteoporosis), infection throughout the body, eye infection called ocular herpes simplex, recent surgery, history of or a current stomach ulcer, heart problems, high blood pressure, or allergy to pig-derived proteins. Tell your doctor about any health problems or medicines.

Acthar may cause side effects similar to side effects that happen due to treatment with steroid medicines. Not all of these side effects have occurred with Acthar but they may occur. Acthar is a medicine that affects a patient’s immune system, and therefore patients may be more likely to get new infections, or inactive infections may become active. Acthar has effects on the adrenal gland. When a patient is taking Acthar, their adrenal gland may produce too much of a hormone called cortisol. This can cause symptoms of Cushing’s syndrome (upper body fat, rounded face, thin skin), which is more common in patients who take this medicine for a long time. When a patient stops taking Acthar after a long time, the body may not produce enough cortisol on its own (adrenal insufficiency). The doctor may prescribe a steroid medicine to protect the body until the adrenal gland recovers. Do not stop administering Acthar without talking to your doctor first. Blood pressure should be checked during treatment, and your doctor may instruct you to make some dietary changes. Patients should not receive certain vaccines during treatment with Acthar. Talk to your doctor about which vaccines are safe for use. Acthar may hide (or mask) symptoms of other conditions or diseases and it may be more difficult for your doctor to diagnose other conditions or diseases in you or your child during treatment. The person receiving Acthar has an increased risk for bleeding from the stomach or having a stomach ulcer. Inform your doctor about any pain in the stomach area, bloody vomit, or bloody or black stools. While on Acthar changes in mood and behavior such as irritability, depression, or trouble sleeping, may occur.

Other side effects are possible. Acthar may make certain other medical conditions worse, such as diabetes (may increase blood sugar); cause eye problems, such as cataracts, increased pressure in the eye (glaucoma), and possible damage to the optic nerve; and cause allergic reactions to Acthar (seen as skin rash, swelling of the face, tongue, lips, or throat, and trouble breathing). Acthar may affect growth and physical development after long term use. Long term use of Acthar may cause an increase in the size of the heart, but this condition usually goes away after Acthar is stopped.

The most common side effects of Acthar in infants include: infections, increased blood pressure, irritability and changes in behavior, changes in appetite and weight, diarrhea, and vomiting. Other adverse reactions reported in adults and children over 2 years of age included: abdominal bloating, anxiety, asthma, chest discomfort, congestive heart failure, dizziness, shortness of breath, redness of the face, fluid retention, flushing, headache, injection site pain, tiredness, muscle weakness, nervousness, rapid heart rate and lack of energy. Tell your doctor if there is any side effect that bothers you or your child or that does not go away. These are not all of the possible side effects of Acthar. For more information, ask your doctor, nurse, or pharmacist or call 1-800-465-9217. You may report side effects to the FDA at 1-800-FDA-1088.

For a full list of warnings, precautions, and adverse events related to Acthar, please refer to the full Prescribing Information including the Medication Guide for the treatment of Infantile Spasms and discuss this information with your healthcare provider.

H.P. Acthar^® Gel and Questcor^® are registered trademarks of Questcor Pharmaceuticals, Inc.