In honor of
Purple Day for Epilepsy this month we wanted to share with you the story of one of our customers. Each addition of our “Achieve Your Everyday” Newsletter features a family following the ketogenic diet. Every family has their own story and each and every one has its own value. We hope this interview with keto mom, Trisha Brady, provides some good tips for those following the diet and those thinking about starting the diet! We are always looking to hear YOUR story, if interested in sharing with us please contact everyday@ketovie.com
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Patient Spotlight: The Brady Family
Trisha Brady had a normal pregnancy and delivered a healthy baby boy, Jake. Jake was developing normally but just before Jake turned a year old, The Bradys started to notice some head nodding when he was sitting up and crawling. At first the pediatrician thought everything seemed normal but as the episodes became more frequent, severe, and Jake was behind on starting to walk, the family was referred to Kaiser to see a pediatric neurologist who ultimately recommended a video EEG. Before the results from that test were clear, Jake had an episode where he had several seizures per minute over a span of several minutes. Kaiser recommended The Brady’s immediately head to Children’s National Medical Center where additional tests began. This was an extremely overwhelming time for the family as the thought of seizures had never even crossed their minds. Suddenly, here was their perfect, year old baby needing MRIs and eventually a spinal fluid test which would show a large glucose deficit (this would eventually help lead to his overall diagnosis).The Bradys were very hesitant to go through with all of the testing initially but trusted the advice of the physicians at Children’s National Medical Center and proceeded with all recommended testing. The family now advises parents to truly listen to the advice of their healthcare providers when faced with similar situations. After initial testing, Jake was diagnosed with Epilepsy and put on anti- seizure medication Topamax which stopped the severity of his seizures but did not stop them altogether. Eventually another medication, Keppra, was added and though his seizures had stopped, Jake was now two years old and still not walking. The family remained deeply concerned. About a year later, Jake was diagnosed with Glut- 1, a genetic disorder that impairs brain metabolism. After his first visit with Dr. Amy Kao & Dr. Gropman at Children’s National Medical Center, Jake was started on the ketogenic diet. Two weeks later, Jake was much more stable and within just one month, he was walking! He was eventually weaned off of a majority of the anti- seizure medications and is now a thriving five year old. This upcoming June will mark 4 years seizure free and 3 years on the ketogenic diet for Jake Brady.
What would you say was the hardest part of starting the diet?Even after reading about what was to come, the hospital initiation was brutal. It involves constant blood draws, sugar checks and band- aids on all ten fingers and toes. However, it’s important to understand why all of these items are being monitored. Try talking with other parents prior to admission who have recently gone through it. Simple things like decorating the hospital room, having a treasure chest with small rewards for each day, and bringing along some age appropriate activities were huge for us
Any other good tips for that time in the hospital?After working with the dietitians in our clinic for the appropriate ratios, we spent the weekend before the hospital cooking and brought along a cooler of keto meals from home. We used many recipes from Dawn Martenz cookbook (order here) and ordered the Starter kit from the Charlie Foundation (order here). Although all Jake wanted to eat the first day were Dawn’s keto puffs, the microwave bacon and eggs eventually saved us. Most importantly, bring your own sponge and dish soap, trying to clean up meals with a lot of butter and oil is not fun!
What’s Jake’s favorite fat bomb?Chocolates – cream and butter and coconut oil and some cocoa powder with Walden Farms chocolate syrup. We also make “chocolate beans,” Jake eats 2-3 chocolate beans a day in order to be able to eat more fruit and other things.
What ratio does Jake follow?3.5:1, this has been going really well for us.
What do you pack for lunch?At our school the caretakers provide us with a monthly menu, from this we are able to try and send items similar to what everyone else in the class is having.In the summertime, Zipsicle pouches (Order here) are one of my go-to items. They can easily be filled with Powderade Zero and make popsicles that look just like the ones everyone else in the class is having.
Which individuals at Jake’s school do you inform about the diet?Our clinic (CNMC) provided us with paperwork to give to the school and teachers, be sure to ask your clinic about this. I also worked with the teacher to be sure she knows how to properly use a food scale. His teacher is also great about always putting Jake’s food into the same bowls, plates, etc. as all of the other kids during daily meal times and on holidays and special days. I also provide his teacher with extra items to keep in the freezer to have on hand in the case of a surprise day.The KetoVie Cafe Pizza Petites and KetoVie Cafe Donuts are great for this since they can be frozen for up to a year.
What has your support group meant to you?The group at Children’s National Medical Center provides a great opportunity to be able to share tips tricks, meet other families and trial new foods. This can be an expensive diet and it’s heartbreaking to spend a ton of money and then make something that gets thrown in trash. The group provides a chance to save others time and heartbreak.
What does Everyday is Everything mean to you?Being able to have the time with family. Every week, my family and I spend hours in kitchen, often cooking until 2-3 am. This to me means getting part of your life back.
KetoVie Cafe items help give that hour back to play outside with Jake instead of cooking. I’m getting a few evenings of life back.
Jake and his family at his first Nascar race!
Jake Brady supporting his Washington Redskins!
Jake and his family at the 2016 Race for Every Child in Washington, D.C.
Jake at Children’s National Medical Center in Washington, D.C.
