Peyt's Peeps

Our sweet Peyton came into the world with a bang! In true Peyton fashion, he arrived 4 weeks early.  Due to his prematurity, his lungs had not developed enough to allow him to take his first breaths; he suffered a collapsed lung and required immediate intubation to breathe. His first two weeks of life consisted of a plexi-glass box, rather than being snuggled by Mommy and Daddy. Fast-forward to his early months, he was the best baby! He never cried, ever! He was the most easygoing baby, always happy! He did not care if we fed him, changed him or put him on his tummy, he was just happy to be! The dates for milestones came and went without being met, he would smile, but never cooed or babbled, he would roll, but no pulling up or sitting. Then came the seizures. As parents, we were devastated, we had no clue what was happening to our sweet boy. Thankfully, through whole exome sequencing (advanced genetics testing) we were given answers for his delays in the form of his diagnosis of Christianson Syndrome. Learning our boy had CS was devastating for us, but it also helped us understand all of the things that made Peyton who he is. We have been able to deal with symptoms such as chronic reflux, severe constipation, no speech, excessive mouthing objects, drooling, poor muscle control, lack of balance, intellectual disability and the constant movements. The symptom that hurts the most is and has been the terrible seizures. During a hospitalization for seizures, we learned that Peyton also has Lennox-Gestaut Syndrome, an extremely severe form of epilepsy. Treatment options are limited for kids with LGS. We added another seizure medicine, bringing us up to three. We had a surgery to implant a Vagus nerve stimulator, in hopes that his seizure activity would be quelled. We also started to research CBD for treatment of seizures. What we discovered astounded us! Kids were having amazing results with CBD and even weaning from all other seizure meds! This is HUGE! While we are thankful for pharmaceuticals to control seizures, they are limited; we were constantly increasing doses and adding another medicine when the doses could no longer be increased. AND the side effects of seizure meds, don’t even get me started! In our extensive research, we also learned that CBD could possibly help us too, with our anxiety and pain. Trust me, having a medically fragile child comes with mass quantities of anxiety, oh and lifting and manipulating 55+ lbs on the daily is hell on the muscles/joints/SPINE!!!!

Since the introduction of CBD Peyton has become more aware of his surroundings. He is no longer requiring medicine to alleviate constipation, his seizures are much less and we are weaning from one seizure medicine and if he continues to do well, we have a plan to wean from another seizure medicine also. THIS IS AMAZING! WE are currently only taking two seizure meds, with no plans to add another!!! We believe that CBD has been an amazing additive for our family, our hopes is that Peyt’s promise could be an amazing benefit for your families too.

Everyone to whom much was given, much will be demanded of him Luke 12:48