Sydni has Doose syndrome, she was (seemingly) perfectly healthy until 4, very sharp and funny. Out of the blue the the seizures hit, and within a month or 2 she was up to thousands a day. All kinds, primarily drop seizures, absence, and tonic clonics.The last 5 years she has had the seizures 24/7 without rest. At 9 years old she now tests at about a 3 year old level for most academic related items. Increased seizures happen due to allergies, excitement, sickness, sleepiness… She has been on 8 or 9 meds. She has been on Ketogenic diet. She has also had the VNS put in.She has had 4 sets of stitches, 2 broken arms (due to poor balance) and 1 of those requiring pins be put in her arm. With a BMI that dropped to the 3rd percentile, she was labeled failure to thrive a year ago and was given a G-tube to help catch her growth and weight up to where it should be.
My hope is that before any of the Dr’s methods cause permanent damage or further impairment that we see the CBD decrease her seizures drastically or in a perfect world, stop all of them. I want to see her get the rest of her childhood.