4 Years seizure free! Posting for awareness, and to spread hope to all moms with medically needy kids. IS gets overlooked because the seizures are subtle and not traditional looking. My whole world crumbled when we got diagnosed cause the future doesn’t look so promising. We did an intense Keto diet, supplemented, with DHA, lions Mane, CBD, and fermented veggies, loads of therapy. Enzo is a smart and typical boy who loves to be a big brother neurologist say that his development is so positive because we caught everything on time but I believe in my mom heart that where where we are because of all of his efforts to get up and try again, even if it’s difficult on the first try. To our mom’s going through a tough diagnosis my DM is open and I wanna give a special shout out to. @romysworldppec for all the endless support to my family and I.
Living through a child's diagnosis of infantile spasms is overwhelming, especially when seizures are subtle and easy to miss. From my personal experience, an early and aggressive treatment approach can make all the difference. We incorporated a high-dose steroid treatment initially, which helped stabilize seizures alongside an intense ketogenic diet. The keto diet, which focuses on low carbs and high fats, has transformed many children’s seizure management by altering brain metabolism. In addition to conventional treatment, I found adding supplements such as DHA (an essential omega-3 fatty acid), lion’s mane mushroom for cognitive support, and CBD oil to be beneficial. Fermented vegetables also played a role in improving gut health, which can influence neurological well-being. Therapy is vital too; a multidisciplinary approach including physical, occupational, and speech therapy helped my child develop skills despite early neurological challenges. The journey is not easy—there are setbacks and tough days—but witnessing progress, no matter how small, renews hope. For other parents navigating an infantile spasms diagnosis, connecting with support communities offers invaluable emotional strength and shared knowledge. Remember, early detection and comprehensive care are key to positive developmental outcomes. Stay strong, trust your instincts, and never hesitate to reach out for help.