Life-Changing Updates

Hello friends! Happy 2019! I’m sorry it has been so long…but a lot has happened since I last wrote and I’m excited to catch you all up!

Since I last wrote, I left Amsterdam (😢), went to Israel-Palestine for two weeks, went home for 5 weeks and came back to Goucher College for my last semester of undergrad! While doing all of this, as always, I handled my medication and diet and had a lot of fun.

Going home and having mom-cooked meals catered especially to me was fantastic. My first night home, after a 12 hour flight, we had Thanksgiving food (cauliflower mash) and two days later we celebrated Chanukah (radish latkes and a few potato too!). Over the weeks I was home I experimented with baking and perfecting my omelette skills.

link for muffins: https://www.wholesomeyum.com/recipes/keto-low-carb-paleo-blueberry-muffins-recipe-almond-flour/

*I made them with blueberries and chocolate chips – yum!

link for brownie mix: https://www.lakanto.com/products/sugar-free-low-carb-brownies

On January 25th, 2019 I had an appointment at Johns Hopkins with Dr. Mackenzie Cervenka (she is AMAZING and works in the adult keto clinic). I was going in having been weaning topamax over the last five weeks – from 200mg at night to 150mg to 100mg to 50 mg, going down 50mg every two weeks. I was at 50mg when I had my appointment. Topamax was the first medication I was prescribed, almost 10 years ago when I was diagnosed, and has been the constant treatment throughout this whole journey.

So many great things happened at this appointment. I was able to tell Dr. Cervenka about how great I am feeling at 80g of carb and weaning topamax. We reflected on my first appointment with her, four years ago. We were desperate and Dr. Cervenka and my dietician Bobbi Henry were our saviors. We all got a little emotional thinking about how much has changed since that first appointment.

The appointment just got more and more exciting. Since I am no longer technically on the ketogenic diet, I no longer need to go to the clinic at Johns Hopkins. This means that I can go to the doctors office that isn’t at the hospital. I also need to do another EEG. I have always done those at home, and for the past few years they have all been 3-day ambulatory (at-home) EEGs. BUT (this is truly some of the best news), I can now do a 4-hour, sleep-deprived EEG at Dr. Cervenka’s office! Only FOUR hours!

Last night (Feb 2, 2019), I took my last dose of topamax!

At the appointment, we also discussed weaning lamictal, the other medication I am on, and came to the consensus that if my blood labs showed a good number then I could wean a little bit this year. Since I still have the potential to have seizures, due to the few spikes I have in my sleep, it is important for me to still be on a medication for now. I was able to do labs right after my appointment and my blood level was 9.6, after taking my morning lamictal dose (300mg extended release) in the morning. This was deemed an acceptable number for me to decrease!

*reminder- everyone’s body is different. please do not relate these numbers to your own and do not go off of your medication without the guidance of a doctor. 

This semester I will be going to my first neurologist appointment alone and be doing my first EEG alone. It is a little nerve-wracking, but mostly I am very excited for the state of my health right now and what that means for me right now and in the future.

I’ll try to write more soon. This is my last semester of college and soon I will be entering a whole new stage of life! You all will definitely be along for the ride!

Seize the day!

Naomi

 

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