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In Episode 30 of TSC Now, host Dan Klein kicks of Infantile Spams Awareness Week 2021, an initiative from the Infantile Spasms Action Network (ISAN) that runs December 1-7. ISAN is a collaboration of 32 national and international entities, including the TSC Alliance, focused on raising awareness for infantile spasms, a devastating type of seizure that usually begins in children who are less than one year old and can lead to developmental delay.
This year in addition to raising awareness of IS to parents and caregivers, ISAN is redoubling our efforts to educate frontline physicians, including pediatricians and ER doctors, who might be the first person confronted with an IS case and who are key to elevating those cases to the appropriate specialists to ensure a quick diagnosis and start of treatment.
To better understand the challenges physicians may face when trying to diagnose IS and how ISAN might reach physicians with our messaging, Dan chats with Dr. John Mytinger (01:31), a pediatric neurologist at Nationwide Children’s Hospital and Assistant Professor of Clinical Pediatrics and Neurology at The Ohio State University College of Medicine. He shares why IS can be tough to diagnose, what the seizures look like, and how professors, doctors and advocates all play a role in educating medical professionals. He also discusses what parents should do if they suspect their child is having infantile spasms.
Throughout the week the TSC Alliance and other ISAN members will be posting about Infantile Spasms on our social media channels. Join the conversation and help spread awareness with #ISAW2021.
If you or someone you know suspects their child is having infantile spasms, remember the mnemonic STOP IS.
[S]ee the signs
[T]ake a video
[O]btain a diagnosis
Time is brain. The faster a child is diagnosed and treated for infantile spasms, the less the potential for long-term neurological effects. Learn more about Infantile Spasms Awareness Week (Dec. 1–7) at www.infantilespasms.org.
Links and Resources
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In a very special early edition of TSC Now, host Dan Klein explores the topic of infantile spasms (IS) as Infantile Spasms Awareness Week (ISAW), held annually December 1-7 to raise awareness of IS with both parents/caregivers and frontline physicians, comes to a close. To learn more about infantile spasms go to www.infantilespasms.org.
First, Dan talks to Kelly Knupp, MD, Associate Professor of Pediatrics and Neurology at the University of Colorado Anschutz Medical Campus and member of Infantile Spasms Action Network (ISAN) (01:23). She discusses what infantile spasms are, what they look like and are sometimes misdiagnosed as, and why they are so serious to the cognitive development of babies. She also explains what tests need to be done to confirm a diagnosis, what first line treatments are available, and why early intervention is so important. Finally, she offers advice to parents who suspect their child might be having spasms, and urges all parents who are concerned to first take a video of the strange behavior to share with their doctor and then don’t delay in seeking care despite the ongoing COVID-19 pandemic.
Then, Dan talks to Ashley Callahan of St. Augustine, Florida (14:53). In June when her daughter Kaylee was 4 months old, Ashely noticed Kaylee making strange repetitive eye movements, which prompted a trip to the emergency room despite the COVID-19 pandemic and eventually a diagnosis of infantile spasms. Ashley shares what led to the decision to take Kaylee to the emergency room, what it was like getting a diagnosis of IS, and how she has found support through groups online. She also shares her advice for other parents who may be worried about their child and encourages them to trust their instincts.
Throughout Infantile Spasms Awareness Week, the TS Alliance and other ISAN partners have made a coordinated effort to develop resources for families and to generate coverage of this important initiative. Below are some links to some of these resources and coverage of #ISAW2020. Our deepest thanks to everyone who helped raise awareness of infantile spasms this year.
Resources and Links
- TS Alliance President and CEO Kari Rosbeck joined Dr. Rahat Sayyad, host of the DoctorMommySpeaks podcast, to talk about infantile Spasms: https://podcasts.apple.com/us/podcast/ep-16-how-to-identify-infantile-spasms-take-action/id1524071289?i=1000500499737
- Kari also spoke to Dr. Elliot Berlin, host of the Informed Pregnancy Podcast: https://www.informedpregnancy.com/listen/episode/3a869a0f/infantile-spasms-kari-rosbeck
- Dr. Martina Bebin, MD, MPA, Professor of Neurology and Pediatrics at the University of Alabama at Birmingham Epilepsy Center, discussed the challenges of IS in an interview with NeurologyLive: https://www.neurologylive.com/view/martina-bebin-md-mpa-challenges-associated-with-infantile-spasms
- Dr. Shaun Hussein, MD, MS, Director of the UCLA Infantile Spasms Program, gave an interview with Babygaga on how to identify infantile spasms: https://www.babygaga.com/interview-dr-shaun-hussain-infantile-spasms/
- The Callahan family shared their story with the St. Augustine Register, Newsweek and St. Augustine Moms (full links below)
- The Mosco family shared the story of their daughter Hanna’s IS diagnosis in the San Diego Union-Tribune: https://www.sandiegouniontribune.com/opinion/commentary/story/2020-12-07/commentary-dont-avoid-check-ups-or-the-er-becuase-of-coronavirus-our-baby
- Finally, the Infantile Spasms Awareness Network created a short video to help parents know the signs on IS: https://youtu.be/kRt8muFfUQo