Each year, nearly 1,200 infants are diagnosed with infantile spasms (IS). This devastating neurological condition, if left untreated, can cause developmental delays in a child’s growing brain.
CNF proudly convenes the Infantile Spasms Action Network (ISAN) — a collaborative network of 20+ national and international entities dedicated to raising awareness for IS. Together We Can STOP IS!
New Online Course from American Academy of Pediatrics (AAP) and American College of Emergency Physicians (ACEP) – Infantile Spasms: Early Recognition and Treatment
This online course is designed to help primary care and emergency physicians recognize and identify the typical signs and symptoms of infantile spasms. It will also review the most effective therapies for infantile spasms.
- Identify the typical signs and symptoms of infantile spasms in infants
- Recognize the various causes of infantile spasms
- Recognize that infantile spasms can occur in both infants who are developing typically, as well as infants with developmental delay
- Describe how early treatment of infantile spasms improves cognitive and developmental outcomes
- Select effective therapies for infantile spasms, using evidence-based medicine and American Academy of Neurology (AAN) practice guidelines
Course was developed by the American Academy of Pediatrics and the American College of Emergency Physicians, with practice guidelines from American Academy of Neurology – all members of ISAN. This PediaLink course was supported by the Child Neurology Foundation.
Register today. MOC/CME available. $29 for non-AAP members.
Patient Assistance Programs for Sabril® and Currently Available Generic Vigabatrin
Due to challenges reported by patients and providers, ISAN developed an informational table to help patients and health care provider understand currently available patient assistance programs and their requirements for Lundbeck Sabril®, and generic vigabatrin products offered by PAR Pharmaceutical, Amneal and Upsher-Smith as well as a private foundation offering help with co-pays. Additional information available here from our ISAN partner, TS Alliance.
SHAREPlus Program Support Center
- Only new commercially insured patients one month to 2 years old with a confirmed diagnosis of infantile spasms and registered in the REMS system are eligible for a one-time 30-day supply while receiving insurance approval.
- No bridge supply offered for ongoing prescription.
- Co-pay assistance may be available for commercially insured patients. Click here for eligibility information.
- Other patient assistance may also be available. For more information, contact the Lundbeck Patient Assistance Program at 833-800-0119.
Patient Support Program
- Help with benefits verification and prior authorizations (PAs) and appeals.
- “Quick Start Shipments” provide a 5-day supply of product where a PA or appeal will take more than 24 hours to resolve.
- A second 5-day supply will be available for patients experiencing longer delays for coverage.
- Patient Assistant Program offers no-cost product for those who do not qualify for coverage, co-pay or alternate funding.
- Co-Pay Assistance where alternate funding assistance is not available for commercially insured patients (those without Medicare Part D or Medicaid).
Patient Assistance Resource
- Only for commercially insured patients one month to 2 years old with a confirmed diagnosis of infantile spasms.
- “Quick Start” pack will provide a 5-day supply for those requiring prior authorization.
- A second 5-day supply will be dispensed on an as-needed basis during insurance approval.
- For eligible patients, PAR provides co-pay assistance and patient assistance programs. For eligibility requirements, contact the Patient Assistance Resource numbers above.
(vigabatrin) for Oral Solution Access Pathways® Program
866-923-1954 (M-F 8am-9pm ET; Fri-Sun 9pm-9pm ET)
- Available for new and existing patients.
- Starter Prescription / Bridge Prescription will provide a 7-day supply if there is any delay in getting a prescription filled (prior authorization, weekend, insurance change).
- Additional 7-day supply will be dispensed as needed if there are further delays due to insurance approval (up to 28 days per starter prescription).
- Access Pathways® provides co-pay and patient assistance for eligible patients. To learn more about these programs, contact Access Pathways® at the number above.
- For more information, click here
Private Foundation Patient Support
- Offers co-pay assistance program for infantile spasms only.
- Provides eligible underinsured individuals with financial assistance to cover all or part of the individuals’ out-of-pocket cost for the supported medications. These programs give individuals the ability to afford their medications.
- For more information, click here.
Together We Can Stop IS
Although awareness efforts are year-round, Infantile Spasms Awareness Week (ISAW) is held annually on December 1-7. During ISAW 2017, the Infantile Spasms Action Network (ISAN) introduced the STOP Infantile Spasms mnemonic. With the mnemonic as the centerpiece for 2017 awareness, we can report that over 195 million were reached due to the collective efforts of ISAN during ISAW 2017!
This helpful mnemonic tool – an easily remembered acronym—is STOP Infantile Spasms:
See the signs: Clusters of sudden, repeated, uncontrolled movements like head bobs or body crunching.
Take a video: Record the symptoms and talk to your doctor immediately.
Obtain diagnosis: Confirm an irregular brain wave pattern with an EEG test.
Prioritize treatment: End spasms to minimize developmental delays
Know the signs to ‘STOP’ Infantile Spasms. Identifying spasms is critical for parents, caregivers and providers.
Infantile spasms (IS) are subtle seizures occurring in children under age one. While rare, they can cause long-term damage to a child’s developing brain.
- Infantile spasms are the result of a neurological condition and are characterized by repetitive, but often subtle movements—such as jerking of the mid-section, raising of the arms or wide-eyed blinks.
- Often, infantile spasms occur in quick succession—in clusters of sometimes dozens at a time.
- About 1,200 children in the United States are diagnosed with infantile spasms each year.
- They often start when a child is just a few months old and are slightly more common in boys.
- Infantile spasms occur in an estimated 40 percent of children with tuberous sclerosis complex (TSC), a genetic disorder that causes tumors to form in various organs and the leading genetic cause of both epilepsy and autism.
Because infantile spasms can be mistaken for other conditions or seen as not harmful, prompt diagnosis and appropriate treatment are critical for the child’s best developmental outcome.
- A child neurologist can confirm an IS diagnosis.
- If parents or caregivers are concerned that infantile spasms have been overlooked, they should feel empowered to address this directly with their health care provider.
- The earlier a child is diagnosed, the greater the chances that the spasms can be treated.
- Once the spasms are treated, a child’s brain has more time to recover and gain developmental ground that may have been lost while the spasms occurred.
- Many children respond well to treatment and go on to develop typically for their age.
What Do Infantile Spasms Look like?
Many people mistake IS for other conditions or see them as not harmful, but knowing what to look for, followed by prompt diagnosis and appropriate treatment are critical for a child’s best developmental outcome. We thank our partners at the Infantile Spasms Project for sharing these videos:
VIDEO #1: In this first example, we see an infant with a cluster of individual spasms. Each spasm is less than one second long and heralded by sudden change in behavior with a look of surprise, wide opening of the eyes, brief stare, and elevation/extension of both arms. In between each spasm, the infant appears to be fine. This is very typical of infantile spasms.
VIDEO #2: Next, we see a 6 month old boy who similarly exhibits a cluster of spasms. Of particular note, each spasm is characterized by more vigorous extension of the right arm, in comparison to the left. This suggests that the seizures (spasms) originate in the left brain. This was confirmed by neurodiagnostic testing, and this boy underwent a successful hemispherectomy after several medications were unsuccessful. You can read more about his story at evanstauff.com.
VIDEO #3: The infant in this video experiences a cluster of spasms that is slightly different. Although each spasm in the cluster is brief, and similarly characterized by a sudden arrest of behavior with extension of both arms, we see that the spasms provoke an emotional reaction with crying—which momentarily stops with each spasm. This is fairly common and many children with infantile spasms have clusters accompanied by crying or fear. In contrast, some children experience unexpected laughter or happiness. The reasons for these emotional phenomena are not entirely clear but suggest that spasms often affect regions the brain responsible for emotion.
VIDEO #4: The next video shows an infant with fairly typical infantile spasms, with a vigorous head drop and simultaneous lifting of both arms. There is no clear asymmetry in the appearance of the spasms. Compare this video with the following VIDEO 5 – the same patient.
VIDEO #5: This shows the same infant presented in VIDEO #4. This video was recorded 10 weeks after the first video, following a course of therapy and partial improvement. Notice that the spasms are now “focal” and manifest with a much milder head-drop, and lifting of just the left arm. This suggests that the right brain is the source of the seizures (spasms). This example demonstrates how it is important not to assume that symmetric spasms exclude the possibility of a “focal” source of seizures.
We share this video, produced by the UK Infantile Spasms Trust and developed to raise public awareness of this rare but potentially devastating disease of infants. Find out more at ukinfantilespasmstrust.org
Infantile Spasms Action Network (ISAN)
In 2015, CNF partnered with the Tuberous Sclerosis Alliance (TS Alliance) to lead a multi-year IS awareness and education initiative. IS efforts are showcased during ISAW. In 2016, CNF convened two forums that brought together epilepsy advocates and leaders from provider member societies. The group discussed a comprehensive strategy to raise IS awareness.
Today, this group – the Infantile Spasms Action Network (ISAN), convened by CNF – has grown into a collaborative network of over 20 national and international entities focused on raising awareness for infantile spasms. Do visit the websites of these wonderful organizations to see first-hand their commitment to the child neurology community.
2018 ISAN Members: American Academy of Neurology | American Academy of Pediatrics | American College of Emergency Physicians | American Epilepsy Society | Association of Child Neurology Nurses | Bcureful | Belgium TSC | The Brain Recovery Project: Childhood Epilepsy Surgery Foundation | Child Neurology Foundation | Child Neurology Society | CURE Epilepsy | Danny Did Foundation | Dup15q Alliance | Epilepsy Foundation of America | Global Genes | Greenwich Biosciences | INSYS Therapeutics | Lennox-Gastaut Syndrome Foundation | Mallinckrodt Pharmaceuticals | Mickie’s Miracles | National Organization for Rare Disorders (NORD) | RARE Science | Seizure Tracker | Tuberous Sclerosis Alliance | Upsher-Smith Laboratories
Questions about ISAN? Want your organization/company to get involved? Contact firstname.lastname@example.org.
Recap: ISAW 2017 Events
ISAW was held in conjunction with the American Epilepsy Society meeting in Washington, DC. ISAW aims to increase awareness and understanding of IS through developing and distributing educational materials to providers, caregivers, and the public; announcing new and useful research and support initiatives; recognizing exemplary contributions to care; and inviting families living with IS to be part of a larger community—many stories with one voice. Access the November 30 News Release re: ISAW 2017. With the mnemonic as the centerpiece for 2017 awareness, we can report that over 195 million were reached due to the collective efforts of ISAN during ISAW 2017!
In addition to release of the STOP Infantile Spasms mnemonic, other ISAW2017 activities and events included:
A successful Satellite Media Tour that highlighted STOP Infantile Spasms and ISAW 2017 events
An animation created to educate parents and health care providers to help STOP infantile spasms: [S]ee the signs, [T]ake a video, [O]btain a diagnosis, [P]rioritize treatment:
An Innovation Pavilion on Infantile Spasms was held on December 4 and featured expert panelists, who were broadcast via Facebook live:
IS Clinical Panel: Signs, Symptoms and Causes of IS: Mary Zupanc, MD | Current Treatment Options for Infantile Spasms: James Wheless, MD | Value of Early Genetic Testing for Infants Diagnosed with Infantile Spasms: Anne T. Berg, PhD.
IS Research Panel: Preclinical Models of IS and Current Testing: Aristea Galanopoulou, MD, PhD | PREVeNT Clinical Trial (Preventing epilepsy using vigabatrin in infants w/TSC): Martina Bebin, MD, MPA | Other Potential Treatments for TSC: Shaun Hussain, MD, MS.
A Congressional Briefing Breakfast was held on December 5 to raise awareness of infantile spasms: urgent need for accurate diagnosis, current treatments available and research on the horizon to prevent these seizures:
- Welcome on Behalf of Infantile Spasms Action Network (ISAN): Amy Brin Miller, MSN, MA, PCNS-BC; Executive Director, Child Neurology Foundation
- Infantile Spasms: What They Are and Why You Should Care: Shaun Hussain, MD, MS; Director, UCLA Infantile Spasms Program | Assistant Professor of Pediatrics | Board Member, Child Neurology Foundation
- Mickie’s Miracles: Conquering Infantile Spasms: Kristie Griess; Mother and CEO/Visionary Founder of Mickie’s Miracles
- Tuberous Sclerosis Complex: Leading Symptomatic Cause of Infantile Spasms and Model System for Research: Kari Luther Rosbeck; President/CEO, Tuberous Sclerosis Alliance
- Preventing Epilepsy: What is on the Horizon for Infants with Tuberous Sclerosis Complex: E. Martina Bebin, MD, MPA; Primary Investigator, Preventing Epilepsy Using Vigabatrin in Infants with Tuberous Sclerosis Complex (PREVeNT) Clinical Trial | Professor of Neurology and Pediatrics, University of Alabama at Birmingham School of Medicine | Board Member, Tuberous Sclerosis Alliance
CNF provides Infantile Spasms Awareness Grants to ISAN advocacy partners interested in building awareness for IS. Funded projects are to be implemented in conjunction with ISAW. The 2017 Grant recipients were: American Academy of Pediatrics | CURE Epilepsy | Danny Did Foundation | Dup15q Alliance | Mickie’s Miracles. Mickie’s Miracles developed this PSA to raise awareness of IS:
ISAW 2017 Grants & Awards
To be alerted about the next grant cycle, click here.
Brendan Michael Harnett Mini-Grant. The Harnett Mini-Grant was founded by Mr. Michael Harnett in January 2014 as a memorial to his nephew, Brendan, who was diagnosed with IS and passed away before his first birthday. Each year, in honor of ISAW, one $1,000 mini-grant is awarded to a child with IS and his/her family to cover the cost of medical devices, treatments, therapies, or other services not covered by insurance.
Congratulations to Christopher Bowen Jr, (age 19 months) and his family from Wyoming — the 2017 Harnett Mini-Grant recipients. Christopher’s mother shares their story: “Christopher was a bright boy from the beginning. Around 11 months we noticed that he would do a weird bend involving his torso and his arms. He was diagnosed with focal cortical dysplasia and IS. He had regressed in development from 12 months to 6 months old because of this. We immediately began the front line medicines but soon found out that he had an intractable form of epilepsy. After almost a year of meds, the doctors have made the decision to do surgery to remove the lesion in his brain at the end of the year. Infantile spasms destroyed us. But Christopher shows developmental improvement every day and a desire to beat the odds. His personality lights up the room and he has a smile to melt anyone’s heart. This grant has been a lifesaver. It was my birthday when u found out my baby got it and it was the best birthday of my life. I will cherish this gift forever. Thank you so unbelievably much.”
Second Infantile Spasms Mini-Grant. CNF received so many applications for the Harnett mini-grant from families in need, that an anonymous donor wanted to support another family. CNF matched that donation and we proudly announce that a second $1,000 grant was made available.
Congratulations to Sawyer Khalaf, (age 18 months) and his family from Minnesota — the recipients of the a second IS Mini-Grant. Sawyer’s mother shares their story: “Sawyer and his twin sister Quinn were born at 27 weeks. Sawyer weighed albs 6.5oz. At two weeks old Sawyer became violently ill with Necrotizing Enterocolitis. In a matter of hours they were preparing us to say our goodbyes. Our little Superman fought through and due to complications he sustained a brain injury. Not only did he sustain a brain injury but he developed Hyrdrocephalus. Sawyer has had 4 brain surgeries in his short life. We began noticing Sawyer “reaching” for things over and over in March, shortly after his g-tube surgery. We weren’t sure what to think about them but when it was brought up to the pediatrician she seemed to think it could be his startle reflex. During a routine screening with Neurology before our upcoming appointment for developmental delays the nurse caught something I said and ordered an EEG. At the EEG they discovered he had 19 seizures in 40 minutes. We had NO idea he was even having them. Sawyer is now on medication to help him stay seizure free. Sawyer is a happy little boy that is full of joy. We are so proud of how much he has overcome and now that he is seizure free he is hitting his milestones. He is trying to crawl and walk, loves standing, eating sweet potatoes and bananas and is so interactive with his sister and family. It’s fun to hear him talking and babbling across the room. The only chair we have currently to get him on the ground with her is his bath tub seat so we are so excited to have a seat he can actually get on the floor and play with his sister! They have a special bond and it is fun to see them play.”
Infantile Spasms Heroes Award. Sponsored by CNF, the IS Heroes Award recognizes a health care provider for making a positive difference in the life of a child with IS. Nominations are accepted from parents and caregivers, acknowledging a provider who has embodied the heroic spirit of compassionate and efficacious care during diagnosis or treatment of IS. To be alerted about the next grant cycle, click here.
Congratulations to the 2017 Infantile Spasms Heroes Awardee, Dr. Dana Alhaqan. Dr. Alhaqan practices at Amiri Hospital in Kuwait City, Kuwait. Dr. Alhaqan was nominated by a family who feels she is truly their daughter’s hero. “Although she is a pediatrician not a neurologist, Dr. Dana changed our daughter’s life by taking the initiative and observing her closely and arranging the required tests and consultation with other specialists and other hospitals in Kuwait. Dr. Dana managed to remove all obstacles in front of us to get a clear diagnosis and receive the appropriate treatment.” Access the press release announcing this award.
Infantile Spasms Hope Award. Sponsored by Tuberous Sclerosis Alliance, the IS Hope Award honors a family who has not only demonstrated courage in the face of their child IS diagnosis, but also shared their experience generate IS awareness of IS and educate other parents on a similar journey. To be alerted about the next grant cycles, click here.
Congratulations to the 2017 Infantile Spasms Hope Award recipients, Paul and Lisa Rossignol. The Rossignol’s 10-year-old daughter Lily endured a prenatal stroke and was diagnosed with IS at 6 months old. Because her seizures were drug resistant, Lily had the right half of her brain removed. She’s been seizure free ever since. According to the Rossignols’ award nomination, “They educate and advocate for improved health care policy, family-centered care, and the importance of community support and resources for each family. The entire Rossignol family has been assets to others facing a new diagnosis of any disability offering in-person and distant support through phone calls, prayer chains, social media support, care packages, fundraising, and vigils.” Access the press release announcing this award.