What do families need to know when they are getting discharged from the NICU after HIE about epilepsy? A few things! HIE is the top cause of neonatal seizures, and can lead to various more common, and rare, seizure disorders and epilepsy.
Knowledge is empowerment, during a time where things feel very much out of control. We think of empowering families with this knowledge as the equivalent of CPR training — it’s something you hope you never have to know, but in case of emergency, something you absolutely would be glad you had vs. not.
When is something typical or concerning?
What is a typical movement or behavior? When would something be more concerning? These are all questions to ask the child neurologist, neonatologist and other clinicians.
Your medical team should be able to describe what you may need to look out for. Infants do all sorts of weird things and movements that ARE typical, so it’s important to ask about what may NOT be typical. Learning what to look for with Infantile Spasms is particularly important. HIE is the second leading cause of Infantile Spasms, a rare but aggressive type of seizure. Infantile Spasms tends to show up between 4-8 months, and needs quick and aggressive frontline treatment to gain control. The onset is considered a medical emergency.
Some things to look out for with Infantile Spasms includes developmental regression, movements that look like baby crunches/sit ups, startles that may lead to crying, clusters of movements, especially falling asleep or waking up.
We have a dedicated section all about Infantile Spasms for more information below:
What babies are more at risk for seizures and epilepsy?
Babies at lower risk:
Babies at higher risk:
The risk of developing epilepsy later in childhood is still one for all HIE families to be aware of. It’s also worth noting that epilepsy itself, outside of HIE, is a common diagnosis impacting 1 in 26 people in their lifetime.
Many times, families feel powerless and overwhelmed when they get home from the NICU. Getting trained in seizure first aid, and encouraging family, friends, childcare providers and others in the community to get trained is something actionable that you can do.
If your baby is having a seizure, you should provide seizure and basic first aid first:
The Epilepsy Foundation offers a quick, easy and accessible training, OnDemand, that you can take and share with others. There is also a longer certification training program that is offered.
Being proactive not only gives you a sense of control in an otherwise out of control situation, but can help ensure you are building a cooperative relationship with your child’s medical team. Ask for specific names and numbers for times you may need to reach them with a concern – especially on evenings, weekends and holidays.
If your child is actively seizing, be sure you are implementing seizure first aid, above anything else. Sometimes babies have very subtle seizures, so better to have it checked out by checking in with your neurologist, than not.
Something you can check if it’s not an obvious seizure is response testing – a firm scratch on the hand or foot – something that would normally cause a child to pull away (not just calling the baby’s name or waving a hand in front of their face). If they do not respond, it’s probably best to get this checked out.
One of the best tools out there is using your smartphone to capture any concerning movements you may want your team to review. Ask your neurologist what the best way is to send those over, and during those off-peak times for evaluation as well.
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