September 2020
Update from Jess & Greg on baby Stella:
The last month or so has seen tremendous progress with our Stella. Since her initial diagnoses, it has been a rough time, to say the least. Front-line medications failed to stop her seizures and had severe side effects, affecting her development, sleep patterns, immune system, and worst of all, her mood. The normal smiley, happy and giggly baby just wasn’t herself, and suffering from multiple seizures a day.
After three hospital stays in less than two months, the last resort was to put Stella on a ketogenic diet. This diet rewires the body to run primarily on fat versus carbohydrates and focuses on eating primarily vegetables, fats, oils and protein and is essentially devoid of any forms of carbohydrates and sugars. This is a medically supervised diet for seizures where carbohydrates are counted to the 10th of a gram and any additional carbs can lead to an increase in seizures. In other words, Stella has had a very different introduction to solids than most of her peers.
The process to start her on this diet included another harrowing week-long stay at the hospital. Hospitals are a foreign, scary place for anyone, much less a seven month old infant during a global pandemic—especially when the hospital is located in the middle of Westwood and has “UCLA” signs everywhere in this Trojan family’s face! (But all kidding aside, we could not be happier and more impressed with her medical and hospital team, so we are happy that we have finally discovered something good about that school!) Stella was a champ through it all; changing from breastmilk to a special formula literally overnight, constant poking and prodding from nurses and doctors at all hours of the day and night, blood draws, and so on. And most importantly, she took to the new diet fairly quickly.
After being discharged from the hospital, it was another week on pins and needles, seeing if her seizures would lesson or stop. In instances such as these, words simply and fully fail to convey the happiness and relief when Stella’s seizures came to a halt. We were able to get 36 days seizure-free. A break our little Stella desperately needed.
The break from the seizures gave understandable and tremendous relief to Stella both mentally and physically. Her development has seemingly restarted, her giggle, smile and good-natured mood returned, and we are in the process of getting her back in the swing of things as far as eating, napping, sleeping, and being our Stella.
Unfortunately this break was far too short lived, as her seizures returned 3 weeks ago, and she is currently suffering from 3-4 per day. This is one of the most terrible parts of her CDKL5 diagnosis—making her seizures intractable with the current treatments available. We are working hard to find a solution to get her another, and hopefully longer, break with the seizures, and hope to report better news soon.
Stella continues a steady and intense regimen of weekly physical therapy, occupational therapy, speech therapy, feeding therapy, infant stimulation, and so on to help her progress. Mom and Dad are becoming grade-A keto chefs, experimenting with numerous homemade recipes to try and make eating as much fun as possible for Stella since so many traditional starter foods and foodie experiences are not allowed on the diet. We are working tirelessly to provide Stella with the development tools to set her up for success and independence.
We are stunned to see the generosity from you all; our friends and family, in the form of donations, time, meals and so on. Our parents have provided so much that we could never return. Greg’s sister and parents made the decisions to leave San Francisco and Indiana—their homes for the past decades and lifetimes—to move to Los Angeles to help. We now have Joe and Nancy, Sam, Sara and within a year, Greg’s parents in Los Angeles to all be a part of Team Stella. And we couldn’t be more grateful. We cannot wait for this Covid world we live in to get more under control for her to be able to meet all of you and to thank you in person.
“It takes a village” has taken on a whole new meaning in our world as we could not be getting through this new, unforeseen life without all of you. Thank you all for helping us stay “Stella Strong” and for being a part of “Team Stella”. We know that with all of you by her side, she will be the best case ever reported for her diagnosis.
With so much love and gratitude,
Greg, Jess, and Stella