Epilepsy: What to Buy (a growing list)

It seems like each week we learn something new about Epilepsy and all the things we need to do for our Epilepsy Warrior.

The list of things to buy seems endless and it appears that there is no shortage on companies looking to make a buck on the real fears that we parents have regarding our child’s safety and general well being.

I am still doing my research and each day I find new things that we may need. This will be a running list of items that might be helpful. If you have any suggestions on what to add, please send me a message and I will try to add it to the post.

IN NO PARTICULAR ORDER (and no one has paid me any money to speak to these items):

  1. Smart-Monitor we use the Premium version of this for our daughter while she is at school. We had to buy a Samsung Galaxy Watch Active2 as she has a Samsung phone. This is also compatible with Apple devices. We had this worked into her Seizure Action Plan at school- the watch is designed to detect Tonic-Clonic seizures and will send a text with GPS coordinates to my husband, my bother, the school nurse, and myself. There are many companies out there that have similar features, it is all about preference.
  2. Breathe-zy Anti-suffocation Pillow I first found out about this pillow from the Epilepsy Foundation. You can order off of Amazon from the company directly. Shipping is steep but it is coming from the UK. They also have a mattress topper.
  3. Sam-i Monitor I don’t have this monitor but many parents have this monitor and I hear, overwhelmingly, how wonderful it is.
  4. Kasa Cameras– I have Kasa Cameras all over my house so that way if I am doing something in another room I can still keep an eye on my daughter. I bought the cameras off of Amazon and just downloaded the app. The app also has limited cloud storage for free or you can upgrade to a paid version, so far, the free app has been sufficient for my family’s needs.
  5. USDA Certified Organic CBD – this is the CBD we buy as through my research I feel that this company has full transparency and offers a truly great product for the money.

Do you have anything you would like to submit to this growing list? Send me a message and we may just add it to the list!

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Warrior Moms Podcast

This post is LONG OVERDUE as I am already into month 3 of the Warrior Moms Podcast! Y’all know that I am a one woman show when it comes to anything on the UnSocially Acceptable front but hopefully that will change sooner rather than later.

This last year+ has been met with lots of ups and downs, with Scarlett’s epilepsy becoming the unwanted member of our family. I remember sitting in her hospital room back in August thinking to myself, “So… this is our life now. We will always have Epilepsy to consider. Epilepsy controls us.” And… again in November and December.

I armed myself with knowledge because, truly, knowledge is power. I am very much a data-driven person (remember, I am trained research and legal analyst by all rights and purposes). Once I started to delve into the world of Epilepsy a few trends emerged – the biggest was that there is no really community of support and awareness. I wrote a few blog entries and… then Covid and the Pandemic hit and depression set in.

I very much followed that narrative until one day I decided that I didn’t want to follow that narrative. I wasn’t going to let Epilepsy and the Pandemic dictate how our lives were going to be. I wasn’t going to hold a fixed mindset. Life is what you make it and my motto is “Everything is Figureoutable.” I was going to figure this out. I was going to find a way to advocate for my child and all the other Warriors out there.

There’s a saying the Epilepsy world – that “science is 30 years behind.” I feel like that community support and awareness are equally behind. There was just SO MUCH TO WRITE. It was overwhelming. How was I going to reach the masses when I would be tied to a desk and keyboard trying to navigate my way through all the different forms of epilepsy and it’s comorbidities? There really was no way for me to do that and do all the things I needed to do both inside and outside my home.

Then came a tough love talk from my friend on the heels of a Rise Live Event created by Rachel Hollis, et al., of The Hollis Company. That tough love talk coupled with the inspiration-injection I had just received from Rise lead to the creation of the Warrior Moms Podcast. Have I ever podcasted before? Nope. Had I ever listened to a podcast prior to this conversation? Also, nope. But I knew it was the right path for this community. I ordered a book on Amazon. I read it. I didn’t understand most of it. I ordered a microphone – it was the wrong kind. I ordered a second microphone, also not great but it gets the job done and then I set a date for the first episode.

I was convinced that the show was going to reach, what I still feel, is a very underserved market but I thought for sure it would take time. I thought I would have months to figure out all of this. Well, add that thought to the list of things I was wrong about. This show was an immediate success (by my standards). Things went from 0 to 100 REAL QUICK. I honestly didn’t know what I was doing. Still don’t. I am just trying to figure it out while trying to reach, help, and inspire others.

Let me say this too, I write because I feel that is my gift. If you have read other entries by me, you would also know that I am battling my own health issues and my own weight and body images. So when I launched Warrior Moms I wasn’t quite sure how the whole podcasting thing works but I figured that the easiest way was to just do it live. Yep. I went that route. Live. Video. Live video when you have body image issues. Live video when you have health issues. Live. Effin. Video. I felt that if I was going to jump in feet first I would have to let go of those thoughts in my head and embrace vulnerability and just do the damn thing.

I also didn’t expect the show to be my own personal form of self-care. This is actually not something I have mentioned on the show yet but it is true. If you haven’t caught the show yet, each week we feature a Warrior Mom or someone who works or supports the special needs community. Hearing these stories and connecting with these people has helped me in ways I never even expected and I hope that is doing the same for my guests, community members, and viewers/listeners.

Another thing I wasn’t expecting was the doors of opportunity to open the way that they did. Within the first few weeks multiple people, companies, foundations were all wanting to connect with me to help me build my audience. What a blessing they have been, what a blessing this entire experience has been.

Each week is a learning curve. I started using a streaming service that had poor quality streaming and we had technical difficulties out the ass. I switched over to a new service and that helped so much. Like I said, it has come with a steep learning curve as well as trials and tribulations. I didn’t understand how to edit sound (still don’t) and lost my audio to my first few months of episodes- which is fine, I still have the live video files.

I committed to a weekly episode format not realizing that it would be a HUGE part of my time in the evenings and weekends which, initially, took away from everything else I am doing. I also didn’t realize the financial commitment it would take to do just some of the things right, like the streaming service and the app I use for my marketing graphics.

All in all, the Warrior Moms Podcast has been one of the most rewarding experiences of my life and I look forward to the future of the show and to the changes it will bring to the special needs and epilepsy communities out there.

You can check out the Warrior Moms Podcast on this blog or on our Facebook Page and Group as we stream live there every Wednesday evening at 8pm/CST. We are a live and interactive show so bring your positive feedback and questions and we will do our best to answer them!

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Epilepsy: Modified Atkins Diet (MAD)

Scarlett taking an active role in her diet and learning the basics! We are so proud of who she is becoming!

In addition to controlling our Warrior’s Epilepsy with anti-epileptic drugs (AEDs) we have also been prescribed the Modified Atkins Diet (MAD). The MAD diet is very similar to the mainstream Ketogenic Diet (Keto) but it is a bit more stringent on following macros than mainstream Keto.

When using MAD as a tool to control Epilepsy, it is common to see daily carb restrictions between 10g to 20gs. The diet can be made to be more stringent by tightening the reigns on total fat consumption and calories. However, it is not uncommon to for the dietitian to try to control it with the least restrictive options and then to restrict the diet further if the Epilepsy cannot be controlled. This diet is also not meant for weight loss but some weight loss is typical.

It is important to start this diet with the help of a dietitian, most epilepsy clinics have a dietitian on staff. Before starting the MAD diet, it is also important to have baseline blood work completed beforehand. Once the bloodwork comes back the dietitian will create a plan for you and you will meet with him or her to go over that plan. Moving forward, for a least the first year, you will have monthly appointments with the dietitian to track your child’s progress and to make any adjustments- bloodwork will also be checked frequently during this time.

Our warrior is 7 months into this diet and it has helped her in so many ways. The most obvious is that she did lose about 10lbs and on her tiny frame, 10lbs is noticeable. However, where we see the biggest difference in her is mental clarity. It started around month 3 and we started to notice she was speaking words much more clearly. Then we started to notice her adding in words she’s never used before. Followed by, sarcasm and whit. Just this last week, we noticed her reading beyond what we know her to be capable of. It is amazing what the brain can do when it isn’t focused on the next seizure.

She does miss certain things. Initially it was the typical “I miss sweets” but as the months went on her need for sweets changed into “I miss carrots.” We do give her some carrots from time to time as a treat. All in all, she loves her diet and she feels it helps her and that has kept her on track and motivated to not cheat on the diet because she understands that her diet is medicine. Food is medicine and that is how it is explained to anyone who asks about her diet.

We felt that it was very important to make her play an active role in her health and diet. She knows the rules of her diet inside and out. She knows how to measure her portions. She knows how to track her macros and she knows how to track her ketone levels on a ketone test strip. Of course, I understand that this is not typical for all children but we felt that it was important for her to be involved.

What we didn’t expect was to unlock a passion in her. She now has plans for after high school- she wants to open a keto food truck and offer keto options to people as one thing she definitely misses is being about to eat out for fun. I am so proud of who she is becoming and I truly attribute these changes to her diet and her current seizure control.

Here are some online resources that we have used but if you have any questions please send me an email and I will do my best to help you or point you in the direction of a resource. Below are some of our commonly used resources, books, and kitchen tools (I do not get anything in exchange for recommending these to you).

1. The Charlie Foundation

2. Diet Doctor

3. Wholesome Yum

4. Instant Pot Vortex Air Fryer (LEGIT GAME CHANGER FOR US)

5. The Ketogenic and Modified Atkins Diets, 6th Edition: Treatments for Epilepsy and Other Disorders Paperback by Eric Kossoff MD (Author), Zahava Turner RD CSP LDN (Author), Sarah Doerrer CPNP (Author), Mackenzie C. Cervenka MD (Author), Bobbie J. Barron RD LDN (Author)

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