- We continue Ethan's daily medication regimen which includes: hydrocortisone (for adrenal insufficiency), Prevacid (for reflux), vitamin K (to help with proper blood clotting), Keppra (for the seizures), Onfi (for the seizures), Topamax (for the seizures), a multivitamin, and DHA supplement. Over the next three weeks we will continue to gradually increase the Topamax to see if that will help bring the seizures under control.
- We keep loving our son and helping him be as happy and healthy as possible.
- We keep praying and asking you to pray for us as we look for a solution to the seizures and for wisdom, courage, patience, and peace with not only this but all aspects of dealing with the effects of this horrific disease on Ethan and our family.
- We keep praying for medical/scientific breakthroughs that will lead to effective treatment options for PBD-ZSD. Ethan, and all the kids with PBD-ZSD need treatment options that will make a real difference in the quality of life for individuals with this disease.
- We keep spreading awareness and advocating for research in partnership with the Global Foundation for Peroxisomal Disorders.
So much has changed over the last almost eight years since Ethan's birth and subsequent diagnosis with PBD-ZSD, yet at the same time so much hasn't. Unlike parents of typically developing children we find ourselves still parenting a child with complex medical needs who's developmental skills range anywhere from 9 to 18 months. Ethan still has PBD-ZSD, and right now his uncontrollable seizures are a major issue. We still fight PBD-ZSD the best we can each day with a basket full of medications and supplements and other medical interventions (feeding tube, cochlear implant, AFOs, etc), numerous therapies, school (which Ethan loves), and prayer. We advocate for him and all children and families impacted by PBD-ZSD and related peroxisomal disorders through our involvement in the Global Foundation for Peroxiso…