Infantile Spasms Awareness Week (ISAW) provides a platform for increasing disease awareness, distributing new research, and recognizing exemplary contributions to the treatment of infantile spasms—a rare, but serious form of epilepsy occurring in children, usually under age one.
Because infantile spasms can be mistaken for other conditions or appear subtly, prompt diagnosis and appropriate treatment are critical for the child’s best developmental outcome. Most pediatricians will only see one or two cases throughout their entire career, therefore it is very important for health care providers and parents/caregivers to know and recognize the signs of infantile spasms.
Awareness efforts like ISAW bring together advocacy organizations, parent/caregivers, industry, and frontline providers to educate the public about infantile spasms. Held December 1-7, the goal is to increase awareness and understanding of infantile spasms through the distribution of objective educational materials to providers, caregivers, and the public; the announcement of new and useful research and support initiatives; the recognition of exemplary contributions to care; and the declaration to patients and caregivers that There is help! There is hope!
Help Spread Infantile Spasms Awareness
Please review the content on this page and at www.infantilespasms.org, a page in the CNF Disorder Directory that includes an article written by child neurologist Dr. W. Don Shields, stories and videos from families living with IS, and community resources to assist parents and caregivers navigating the path of diagnosis, treatment, and management of IS. If you, someone you know, or your organization is impacted by or is interested in joining this collaborative awareness initiative, please contact Amy Miller at firstname.lastname@example.org or 214.789.7316 to discuss. To get you started, the Tuberous Sclerosis Alliance has spearheaded the development of an ISAW Toolkit that includes sample emails, Facebook posts, graphics, and more. Download the toolkit here. Please join us on social media using #ISAW2016 and visit www.isweek.org. And check back for new updates from ISAW 2016 partners!
ISAW 2016 Welcomes New Partners
With the success of the Child Neurology Foundation/Tuberous Sclerosis Alliance partnership during ISAW 2015, our goal in 2016 was to expand our partnerships and our outreach.
To launch ISAW 2016, CNF hosted an IS Advocacy Forum with representatives from 14 different advocacy, provider and industry partners, including the American Academy of Neurology, the American Academy of Pediatrics, the Child Neurology Society, the Association of Child Neurology Nurses, the American College of Emergency Physicians, the American Epilepsy Society, CURE, Seizure Tracker, the Danny Did Foundation, LGSF, Global Genes, TS Alliance, Lundbeck, and Mallinckrodt.
The Forum provided a unique opportunity to discuss IS advocacy and awareness gaps and opportunities within the child neurology community. It also addressed how further collaboration could assist with awareness and outreach to the communities where it’s needed most as well as the public at large. Strategies were discussed, and goals for further collaboration were agreed upon. We look forward to building these partnerships and reaching these goals through ISAW 2016 and beyond.
ISAW 2016 OFFICIAL PARTNERS
ISAW 2016 EVENTS
- December 1:
- Twitter chat using #ISAW2016
- National and Local TV and Radio interviews with Dr. Martina Bebin of University of Alabama-Birmingham, Principal Investigator of PReVent Trial
- Announcement of mini-grant recipient
- December 2:
- Infantile Spasms Hope Award winner announcement
- Tuberous Sclerosis Alliance reception at American Epilepsy Society annual meeting
- December 4:
- Infantile Spasms Advocacy Forum at American Epilepsy Society annual meeting, 12:00-2:00 P.M. CT
- December 5:
- Facebook Live event w/Dr. Bebin
- Innovation Pavilion at American Epilepsy Society annual meeting
ISAW 2016 OPPORTUNITIES AND INITIATIVES
ADVOCACY AWARENESS MINI-GRANTS
To spread awareness of infantile spasms, the Child Neurology Foundation has awarded six $5,000 mini-grants for advocacy awareness projects. The 2016 mini-grant recipients are the American Academy of Pediatrics, American College of Emergency Physicians, Danny Did Foundation, Lennox-Gastaut Foundation, Kathy Leavens: Parent Coach, and Seizure Tracker. See the “Partner Projects” section below to learn more.
INFANTILE SPASMS HEROES AND HOPE AWARDS
Since 2010, the IS Heroes Award has recognized a healthcare professional and his or her institution for making a positive difference in the life of a child with infantile spasms. Nominations are accepted from parents and caregivers who wish to acknowledge a provider who has embodied the heroic spirit of quality, compassionate, and efficacious care during diagnosis or treatment of IS. Visit this site to learn about past Heroes Award recipients
2016 Infantile Spasms Heroes Award Recipient:
Dr. Steven B. Coker
Central DuPage Hospital, Northwestern/Lurie Childrens
Dr. Coker was nominated by the Williams Family for his outstanding care of their son Emmett. Here is the family’s story of their IS Hero:
While our son Emmett’s journey with IS is relatively new, in many ways it feels like a lifetime. About a week before Emmett’s seven month birthday, I noticed him doing an occasional head nod (that I now know were head drop seizures) that seemed a little “off.” I took a video of it, and everyone I showed felt that it just appeared to be typical baby movements. A few days later, while I was changing his diaper, his body seemed to jerk inwards and his eyes rolled back. I knew something wasn’t right. We were out of town at the time, but immediately got in the car and drove home to our pediatrician’s office. We played the videos we’d captured of the head drops and spasms from that morning, and were told that while it could very well be normal, we should see a pediatric neurologist, just to be safe. We were referred to Dr. Steven Coker, and told that it could be several weeks (or longer) to get in to see him.
Thankfully, after calling Dr. Coker’s office and explaining the symptoms (while still in the parking lot of our pediatrician’s office), we were scheduled for an immediate EEG and appointment, first thing the following morning. Directly after completing the EEG, Emmett was diagnosed as having Infantile Spasms. Within a few hours, we were checked into the hospital, and Emmett was receiving an MRI, lumbar puncture, and blood work. All of Emmett’s test results came back normal (and he was given the diagnosis of cryptogenic IS), and the following day he was started on ACTH. Three days after starting ACTH, Emmett’s spasms stopped. Two weeks later, we were ordered a forty-eight hour at-home EEG, which came back completely normal.
As I type this, Emmett is almost two months seizure free, and we have just two more injections of the medication before he is done. While we don’t know what the future will bring, right now Emmett is doing incredibly well. He was assessed by Early Intervention and is completely on track developmentally, except for a possible slight delay in speech. He is always smiling and laughing, crawling on his belly all over the house, trying to pull himself up to standing, playing with toys, feeding himself finger foods, having fun with his sister, and loving life. He is such a happy, sweet, amazing little boy who, even at just nine months old, teaches us about courage and drive every single day. We are grateful beyond words for where we are at this point (thanks to Dr. Coker), and continue to remain cautiously optimistic.
Dr. Coker has truly been our angel. Not a day goes by that we don’t think of where Emmett could potentially be today had Dr. Coker not immediately gotten us scheduled for an EEG and appointment with him. His compassion and knowledge in delivering the initial diagnosis to us was above and beyond, and made it easier for us to digest what was happening so we could focus on getting Emmett’s treatment started right away. Since that day, Dr. Coker and his staff (Katie, Kate, and Jamie) have treated us like family – making themselves consistently available, patiently answering endless questions, and providing us with information that clearly shows a profound understanding of and experience with Infantile Spasms.
The fact that Dr. Coker has been in practice and treating IS for forty years is evident, as is his passion for doing so. The first day we were in the hospital, when we were feeling desperate, clueless, and defeated, he told us a story of how he’d run into a mother and son while out and about who approached him and told him that he’d treated the son for IS close to twenty years prior. The son was a college student, and doing wonderfully. Sharing this story left us feeling inspired and hopeful – and that is how Dr. Coker leaves us feeling in general. He is upfront and honest and he doesn’t sugar coat, but we no longer feel scared about Emmett’s diagnosis, because we feel that under Dr. Coker’s care, he couldn’t be in a better place. No matter what ends up happening with our Emmett, we know he is in the absolute best hands. Dr. Coker is truly our hero, and we feel that he couldn’t be more deserving of this award.
CNF received this update from the Williams family after Dr. Coker had been honored with the Heroes Award at the Child Neurology Society meeting in Vancouver at the end of October:
I just had to email you and let you know that Emmett’s final (for now) follow up EEG today was normal, and his genetic panel came back normal as well! He will not need to see Dr. Coker again for 6 months! We had a great day.
From early recognition of symptoms by the family, to the timely testing, diagnosis, and treatment by Dr. Coker, this truly is an IS success story that conveys to parents There is Help! There is Hope!
Many thanks to Melissa Baswell Williams and the Williams Family for sharing their story and taking the time to honor Dr. Coker and his staff!
2016 INFANTILE SPASMS HOPE AWARD
The Infantile Spasms Hope Award honors a family or individual who not only demonstrated courage in the face of their child’s diagnosis of infantile spasms, but also has used their experience and shared their story to help generate awareness of IS and educate other parents facing this devastating form of seizures. Hope Award nominations were reviewed by individuals from the partner organizations, families who have lived with infantile spasms and three representative physicians.
2016 Infantile Spasms Hope Award Winner
Mount Pleasant, MI
Since Ellen Wehrman’s son, Charlie, was diagnosed with infantile spasms in 2012, her family has faced the disease with a positive outlook and a tendency toward sharing. Ellen Wehrman has captured her family’s life, with IS and beyond, on her tumblr blog.
During their journey, the Wehrman family has encountered multiple treatment plans, additional seizure types, and personal struggles like having another child and moving across the country. They continue to be a positive light to all who are also fighting IS.
In February 2013, my daughter was diagnosed with IS and everything we found online was bad news. The Wikipedia entry was enough to make us cry for a week. The only ray of light I found was one post on Reddit by some woman who mentioned her son being diagnosed. When I contacted her, she sent me the link to her blog. When I opened the link, I saw a sweet 1.5 year old sitting in a high chair, drinking from his sippy cup. Nothing gave me hope like that picture. We had been told our daughter, ‘might spend the rest of her life in a wheelchair and might never be able to communicate with us.’ I told my husband that all I wanted was for my daughter to someday be able to sit in a high chair and drink from a sippy cup. Today she runs, jumps and even goes to dance class. She talks and yells and signs and points–she clearly knows how to communicate her needs!
Since that first contact, I have grown to depend on emails, Facebook messages, and even the occasional text from Ellen. We have never met in person, but I dream of someday getting our little miracles together. I consider her a true friend and we have never even talked on the phone. I can think of nobody else more deserving of this award.”
BRENDAN MICHAEL HARNETT IS MINI-GRANT
The Harnett Mini-Grant was founded by Mr. Michael Harnett in January 2014 as a memorial to his nephew, Brendan Michael Harnett, who was diagnosed with Infantile Spasms and passed away before his first birthday. Each year during ISAW, one $1,000 mini-grant is awarded to a child with infantile spasms and his caregivers to cover the cost of medical devices, treatments, therapies, or other services not covered by insurance. To learn more, visit the Harnett IS Mini-Grant Application Form page.
2016 Harnett Mini-Grant Recipient
Robbie and his Family
Robbie is 2 years old and has suffered with a rare form of Epilepsy known as Infantile Spasms since he was 9 months old. We have tried just about every pharmaceutical option there is, the ketogenic diet, and a Corpus Callosotomy brain surgery so far, and he still has seizures every day. The Child Neurology Foundation has been generous in providing us with a grant for Robbie just in time for Christmas.
With this grant we plan to buy a new Kinder pack baby carrier to help us include Robbie in our everyday life; he still cannot sit unassisted or in a grocery cart by himself. We also are getting switched toys for the first time ever which is very exciting. Recently Robbie moved to a room he is sharing with his 4 year old sister so we are getting him a TV to go to bed to and cool lights to make it into a sensory room like the hospital he frequently stays at. Robbie has had a pretty rough first two years but he never stops stops smiling and we know he will never give up. We appreciate the support from our IS community more than words can express.
- TS Alliance ISAW 2016 Page
- TS Alliance ISAW 2016 Live Twitter Chat
Begins Thursday, December 1st 2016
11:00 AM (Pacific Standard Time)
- Take the Quiz and Share
If you or a family you know has a child with IS, RARE Science would like to support you by gifting a one of a kind RARE Bear to these one of a kind special kids. These beautifully-crafted RARE Bears are made and matched to your child’s favorite hobbies and colors by bear makers from 11 countries.
We ask for your child’s likes so we can match him or her with the perfect bear. After your child received the bear, we request you send a picture of your child with the RARE Bear in its new home, which will be shared with the original bear maker and the many hands that make it possible to send a bear to your child.
Seizure Tracker provides free web and mobile resources to help patients and their care providers better understand seizure activity and treatment efficacy. Seizure Tracker has created new Infantile Spasms educational and awareness resources in their “Seizure Success and You!” information section. These resources include educational facts, links to partner resources and a short quiz with an awareness badge/reward that is easy to share on social media.
Patient Care Online (PCO) webinar (for practitioners): In this webinar, Dr. Mary Zupanc discusses the causes of infantile spasms and the importance of early recognition. She also explains the differences between infantile spasms and febrile seizures.
Infantile Spasms: What Parents Need to Know – IS Resource Page at HealthyChildren.org, the only parenting website backed by 66,000 pediatricians committed to the attainment of optimal physical, mental, and social health and well-being for all infants, children, adolescents, and young adults.
- Infantile Spasms/LGS Awareness Page
- Graphic illustrating the findings of a literature review review to identify discrepancies in the medical literature regarding the relationship between IS and LGS:
Infantile Spasms Resources
INFANTILE SPASMS INFOGRAPHIC-Little Seizures: Big Consequences
Click infographic to view printable PDF version.
Infantile Spasms Educational Videos
Infantile Spasms: Moving Quickly to Diagnosis and Treatment
Entrevista de Espasmos Infantiles
Los Prolongados Efectos de Espasmos Infantiles