Just Say HIE
By Hope for HIE
Just Say HIE brings the stories of the HIE community from around the world to you, exploring each unique journey and connection with its own version of HOPE to share.
Just Say HIENov 17, 2021
BONUS EPISODE: HIE, Seizures & Epilepsy
Join us for this BONUS EPISODE, as we bring our Medical Advisory Board educational series to our Just Say HIE podcast. This conversation was previously recorded and aired in April 2021 during HIE Awareness Month. Topics covered include neonatal seizures, the connection of HIE to seizures and epilepsy, what types of epilepsy babies and children with HIE are at risk for, including the discussion on Infantile Spasms, Lennox-Gastaut Syndrome, and Electrical status epilepticus in sleep (ESES). Tips are discussed on how to build productive relationships with your child's neurologist, including developing a proactive plan of how to contact them in case you suspect a seizure or have a concern about a movement.
We are so grateful to Dr. Hannah Glass and Dr. Renee Shellhaas for sharing their expertise, their dedication to the HIE community in research and in clinical practice, and their involvement in the Medical Advisory Board with Hope for HIE.
To learn more about HIE and epilepsy, be sure to visit our blog.
Giving Hope for the Holidays
Join us as David Ford, president of Hope for HIE's board of directors, shares his HIE story, his calling to give back to Hope for HIE, and encouragement for others to get involved in a myriad of ways as the giving season begins. Learn how to get started with Giving Tuesday, Hope for HIE's 100 for $100 campaign, and the exciting sixth annual Hope for the Holidays giving program benefiting HIE families to improve the quality of life for children and families - now totally over $70,000 of equipment, experiences and journey-lifters for the worldwide HIE community.
Connecting Across the Miles - with Julie and Margie
Join us as we share the stories of Julie Makow and Margie Jones, two HIE moms, who connected through Hope for HIE on the road to kidney transplants for their children. With acute kidney injury and HIE, many children may have impacted kidney function. While Julie and Margie did not leave near each other, through Hope for HIE, they were able to complete the circle of support, for each other and new families. Learn more about some of the plot twists in life, and how tacos with a friend can transform pain into a kindred friendship.
HIE from the Neonatologist Perspective
Join us as we turn the tables and interview the hosts of the widely popular INCUBATOR podcast, Dr. Ben Courchia and Dr. Daphna Yasova Barbeau. We were excited to come together to showcase the parent and clinician perspectives in this collaboration, learning how each physician approaches care, communication and connection in the NICU, how they prevent burnout, process difficult cases, and provide hope in the uncertainty of HIE.
Episode links:
Contact us for questions, ideas or to be a guest - justsayhie@hopeforhie.org
BONUS EPISODE: Tongue, Lip & Cheek Ties
Join Medical Advisory Board members, Nancy Calamusa and Dr. Scott Siegel as they share about the impact of lip and tongue ties on speech, swallowing and feeding, when surgical intervention may be necessary, and why follow up therapies are critical for success.
Tongue, lip and cheek ties are a hot topic in parenting groups. There's a lot of misinformation on the potential benefits, impact and drawbacks to getting these types of connective tissues revised. Without proper pre and post-procedure therapy, especially for children with HIE and other children with feeding and swallowing disorders, it can sometimes cause more harm than good.
Learn from the experts on who may or may not be a good candidate from pediatric feeding and swallowing expert, Nancy Calamusa, MA, CCC-SLP, and pediatric oral-maxillofacial surgeon, and pediatric dentist, Dr. Scott Siegel, who often work in tandem to ensure children can benefit from this procedure.
This episode originally aired as a part of Hope for HIE's Medical Advisory Board educational video series on Facebook, which you can view here.
For more information about Hope for HIE, visit our website.
Connecting with Worldwide Support
Join us as we interview Shiru Wanjiru to learn more about her HIE story and connection, finding support, ideas for advocacy, and the need for collaboration to improve access to equipment in areas of disparity. Learn about the nuances of her journey and the connections that have helped her advocate for cultural change and the reduction of stigma surrounding disability.
Shiru Wanjiru is an attorney advocate, mother, wife, and resident of Tanzania, where she works closely with marginalized populations.
Listen along to learn more about an upcoming project Hope for HIE will be partnering with Shiru on to fulfill some critical needs of her community and families of children with disabilities, her hopes for Malik, and the power of connection in the Hope for HIE community, worldwide.
To learn more about Shiru's story, click here.
BONUS EPISODE: HIE, Cerebral Palsy & Dystonia
Dr. Bhooma Aravamuthan, a pediatric neurologist, movement disorders expert, and lab researcher tackling HIE and dystonia, joins us during Cerebral Palsy Awareness Month to discuss diagnosis of cerebral palsy and dystonia in HIE, transitioning from pediatric to adult medicine, treatments and surgical options for dystonia, and some strategies to help partner with your child's medical team if you suspect or have confirmed dystonia. We are grateful for Dr. Aravamuthan's involvement in our Medical Advisory Board.
Key show notes:
- Advocacy continues to push for earlier detection and diagnosis of cerebral palsy, which can improve access to therapy services and connections to other families and people in the cerebral palsy community.
- A call for better transitions of care for children with cerebral palsy aging out of pediatric services and transitioning into the adult medicine world, and the needs of adults with cerebral palsy.
- Many times getting a diagnosis for dystonia is difficult, especially in a child with CP after HIE.
- Dr. Aravamuthan works with both animal and human research to improve diagnostics and treatments for dystonia that comes from HIE, which traditionally has not been receptive to treatments that may benefit those with dystonia from non-HIE causes.
- Some signs that can help differentiate spasticity vs. dystonia = spasticity maintains pretty much the same throughout the day. Dystonia is variable and triggerable and may be triggered by trying to move or excitement-induced movement.
- Families can help give more insight to their pediatric neurologist by capturing movements on video and sharing with their provider and team for analysis, to augment the in-person clinical assessment.
- More research is needed into treatments. Evidence is now showing some medications are not as effective, and some may be more effective in treating. Surgical options such as Deep Brain Stimulation in children identified earlier than seven years old can be effective, and intrathecal Baclofen pumps may be beneficial when placed up on the spine further than when it is traditionally used for spasticity management may also be a consideration.
Look at the child, not the paper - with Melanie Riggins
Join us as Melanie Riggins, long time volunteer with Hope for HIE, and mom to Zoe and Maisie, talks about her experience with HIE, hypoxic ischemic encephalopathy, her NICU journey, and advice for moving through the different parts of the United States educational system.
Melanie is a talented graphic designer and owner of her own freelance company, Melanie Riggins Designs. In 2013, her daughter, Zoe, was born with HIE, started having seizures several hours later, and began her journey. In addition to Zoe, Melanie has a younger daughter, Maisie, and calls suburban Atlanta home.
Listen along as Melanie discusses her guiding mantra of how "looking at the child, not the paper" has helped her advocate to help meet Zoe's needs from the very beginning, build relationships with her medical team and educational teams, and through her advocacy learning how the various systems work, has helped her build teams that see Zoe for who she is and what her true potential is.
BONUS: HIE & NICU Nursing
Join the nursing professionals of Hope for HIE's multidisciplinary Medical Advisory Board to discuss NICU nursing and HIE, ways to improve care, communication and connection to advocate for HIE families and reduce disparities.
Originally airing on Facebook LIVE! on March 19, 2021, we welcomed Kathi Randall RN, MSN, CNS, NNP-BC, Brooke Rakes PhD(c), RN, RNC-CIC, and Jayne Solomon, MSN, RNC-CIC, NNP-BC, to discuss their experiences and expertise in not only caring for HIE babies and families as neonatal nurses and nurse practitioners, but also trailblazing care. They discuss the evolution of care for HIE, including therapeutic hypothermia, and the various ways they see improvement and research moving forward.
Q&A with Annie Goeller
Learn more about Annie Goeller's involvement in volunteering on Hope for HIE's Board of Directors, what she wants others to know about her daughter's journey with HIE, and how she pioneered launching global HIE Awareness Month in April, beginning in 2016.