#81 Adrianna Stephenson – Brain Tumor Keto Parent

Meet Adrianna:

ABOUT ADRIANNA

• I live in a suburb in Dallas with my family
• I have 2 children
• My oldest son parker is 4 years old and my youngest son is 19 months
• Our keto story starts about 2 and half years ago
• Our older son was 19 months old when he was diagnosed with golf ball size tumor
• He was a perfectly healthy baby, he did not have any trouble meeting development milestones
• When he was about 17 months, I noticed that he started having difficulty with his right hands
• It started first not having to grab bath toys in the water, he was totally left-hand dominant and it really bothered me
• My husband is left handed and at first, I thought he’s just going to be a lefty
• But just that mother instinct told me something was wrong
• I talked to our pediatrician about it and he did not have much to say. He thought it was unusual and he referred us to a neurologist
• We went to the neurologist and told us that Parker looks great, but the right hand was abnormal because at this point, it had progressed from not being able to grab to toy to he was fisting it all the time and it bothered me
• During the neurological assessment, he wasn’t able to pop bubbles with his right finger
• We left that appointment with an appointment for a MIR of the brain at the top of the spine
• Our neurologist assured us that it was just kind of the standard of what we should do to try to figure it out
• Honestly, we left with the thought that it could be something as simple as a pinched nerve
• July 25^thof 2016, Parker had a sedated MIR and the MIR lasted 2 and half hour
• About halfway through, my husband and I had to sign a consent forms and I was trying not to worry too much
• Our neurologist told us that he knows why Parker is having a difficulty with his right hand and it’s because there is a very large brain tumor
• I felt like the floor fell off from underneath me, I got my husband on speaker phone and we literally had no idea what to do
• She told us that they are referring us to a neurosurgeon to go forward that there wasn’t any cause for an immediate response
• We ended up getting connected with a phenomenal neurosurgeon here in Dallas
• I will never forget looking at that MIR – it’s incredibly shocking
• About 10 days later, he was in a major brain surgery and our neurosurgeon removed about 70% of his tumor at that time
• We only spent 4 days in the hospital
• He recovered beautifully
• We went home just to kind of watch and wait
• We have no idea what’s the tumor going to respond and what’s going to happen with it
• And so, we spent the next 3 months just trying to figure out what’s our new normal was, he recovered well and we have no idea that it’s going to go back
• 3 and half months later in December, we had to go to his first post-surgical MIR and unfortunately the tumor has started to grow back and that was completely devastating because our surgeon would not consider another surgery at that point
• Our only option was chemotherapy. He was too young for radiation
• 2 days after we got home from the hospital, I found out that I was expecting our second son
• It was an 18-month chemotherapy protocol. At this point Keto was not on our radar
• I have had a feeling when he was first diagnosed because I had been kind of interested in ancestral health, paleo diet and all of that for years before I even had children
• And my first thought was to get rid of the all sugar
• I was actually scared away from doctors and friends that were doctors that will say to do not change his diet
• At that point, I was frankly just concern he wasn’t going to live that I just put those thoughts aside and just try to survive
• About February of 2017, 3 months into chemo, I had emotional room to start and think about what we could do to support him at home
• And then, I have been following a Facebook group for the type of tumor that our son had and trying to find out any information that I could
• I came across to another mom whose daughter had the same type of tumor with Parker. Same location, same outward manifestation of right sided weakness, same genetic variant that was in it and she was in the same chemo protocol but a year ahead of us
• They had also been doing the ketogenic diet with their daughter since day one while she was on chemo and her tumor was almost completely done
• And it was a validation that my first gut instinct was right
• I did a lot of research and she got me connected with this amazing non-profit project in Orange County, California and they gave me a bunch of information that I could give to my oncologist
• We started Parker the keto diet and on April, he will be 2 years in Keto
• The amazing thing is the first MIR after starting him in keto, all of the post-surgical edema was gone, the cystic portion that started to grow was gone and the tumor itself was about a third smaller
• And that just kept me completely motivated and he looks so much healthier
• This past December, his tumor was completely gone and that was the diet alone
• I did not ask permission to our doctors, but we did tell him what we were doing
• We got our oncologist on board in what we are doing and our oncologist put in orders to the hospital that he was on a ketogenic diet
• That to me was a real turning point that he was valuing our voice
• Solid tumors and brain tumors in particular seem to respond really well to the ketogenic diet
• One of the reasons being is that, the blood barrier that we have which is an amazing mechanism is designed to keep out toxic substances form our head
• That is why chemotherapy is so difficult with brain tumors because we have that blood brain barrier
• The thing about ketogenic diet is that, when your body produces ketones, those ketones actually acts as neuroprotectants
• So, by feeding Parker this diet while doing his chemo, it helped protects his health brain cells
• For me, it is such a low risk intervention that I don’t understand why it is not heavily prescribed. It’s just food
• It’s literally feeding your child whole unprocessed foods and nourishing foods
• Our youngest son doesn’t have the same issues with Parker but we still feed him this way because it is the best nourishment for the growing body
• We literally eat the same food on repeat over and over again to just train his body to get into ketosis and it worked really well
• When we first started, I did not care about his macros as long as he was in ketosis
• I did the two things that I highly recommend for anybody on a ketogenic diet especially with children is, getting a blood monitor and a blood ketone monitor
• It is the most effective way to find out how different food affect your body and whether if you are or not on a level of ketosis
• Looking back at the foods that he was eating, I’d say that it’s fair that he’s probably to 2 to 1 ratio and that took about 2 weeks to get him into that and we were able to maintain that pretty effectively
• We also saw his blood glucose reduced as well
• Now, he is probably in a more modified ketogenic diet. More like a 1 to 1 type of ratio and we raised his protein up a bit because we wanted him to grow
• We started him so young and we think we metabolically trained his body because now, he can eat really high levels of protein and stay in a very solid level in ketosis
• It’s called metabolic flexibility
• My mom is with us, she is 75 years old and she has type 2 diabetes
• Because she lived with us, when we transition Parker to keto, it took about 6-8 weeks for me to throw everything else in our house that was not low-carb
• I told her that it is really important to me that we will not give Parker a complex about food and it is really important to me to make this normal part of a lifestyle
• I told her that she doesn’t have to be strict keto, but we are going to be a low-carb family
• She was really on board on that
• It’s hard to break old habits, but the amazing thing is she has lost weight, reduced some of her medication and she has also arthritis and when she is stricter with keto, her finger and joints feels better
  
  
• Honestly, for him, we only did high-fat keto
• He naturally fasted because being on chemo affects your taste buds, he kind of naturally went into a period of fasting
• Really, I did not have to implement strict fasting with him because he was so small
• For me on the other hand, because I have weight to lose, I definitely cycle intermittent fasting to help me get into the levels of ketosis where I feel really good
• Being fat adapted for me not only brought mental clarity, but it made it so much easier deal with stressful situation
• Fasting has been a powerful tool for me
• Mindfulness and getting into a guided meditation have also been a really important part of my healing process
• It is so important to get your mental health in order as a parent

WHERE CAN PEOPLE FIND YOU

• Instagram: keto4mykid
• Facebook page: Keto 4 My Kid
• Blog: keto4mykid.com (coming soon)

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