Birthdays Suck

My [special needs] daughter will turn 16 soon… and I hate it. Not for the reasons you think but because she has these big dreams of a huge Sweet 16 Birthday Party and I am going to disappoint her. 2 Reasons: 1. It’s a pandemic and parties are generally frowned upon unless you are part of the government or celebrity pools – yes, I went there. And, of course, the fuckin obvious… 2. She’s a special needs child and no one will show up.

I’m not writing this because I am looking for pity (I feel like I have to say that in every post)… I am writing this because I am frustrated, mad, sad, and brokenhearted for my girl. No one wants her to celebrate these major milestones more than I do.

Instead, her father and I planned a weekend away in Grapevine, TX at Great Wolf Lodge in hopes that this is some sort of “fair trade” on something she wanted for her birthday over something she got.

I have this blog so I can talk about the things in life that frustrate me (and others), the things that need to be discussed and all the other things that happen. But there are things that can’t be avoided- like birthdays where I feel like I have to overcompensate because I can’t stand to see her heart broken and alone. These teenage years have been so lonely for her, especially since the Pandemic started.

Her sweet innocent heart doesn’t understand that people are generally selfish in nature because she’s NOT SELFISH. She loves with all her heart and cares more deeply than any person I have ever met in my life. There’s a reason God gave her to me – so I could grow up and not be a selfish asshole too. Full stop.

I was (and probably still am at times) a rigid bitch. I didn’t give a fuck about a person except myself and husband until I had her. Straight up. Motherhood changed me. Then… Fucking plot-twist, my child isn’t just a “normal” child, she’s special needs…and because I love that blue-eyed beauty more than myself… I have never been the same again. Being her mother changed me in ways that only knowing someone like my daughter could.

Warrior Mom is what people call me. I fight for my daughter and because I am strong enough to take up other battles I fight for other special needs families too. But I can’t fight this. There’s nothing to fight, I can’t force people to want to befriend my daughter.

Even I had friends walk out of my life too because I have a special needs child. It’s true. I guess being a friend to a special needs mom is hard too – I get it, you don’t know what to say to me when my kid is in the hospital or if she has a seizure and I can’t make it to GNO…

Side note for the people reading this who have friends with special needs or chronically ill children, you don’t have to say anything, no special needs parent is expecting you to solve their problems if your friend’s kid is in the hospital just say “I am sorry – how can I help you? Do you need a ear to listen to, should I send you many, many memes to help you smile?” You don’t have to track down the leading doctor in Epilepsy or scour PubMed for us – just be there and it’s okay to ask questions- many special needs parents want you to ask questions over fucking vanishing from our lives. And, if you can’t deal with it all, that’s fine too but be a grown up and tell us, don’t leave us wondering why or thinking that we have done something wrong.

Man. This post was supposed to go a lot differently in my head but I guess I have some feelings of abandonment from the friends that stopped responding to my texts when my daughter’s epilepsy was out of control in 2019… I digress.

So. Ya. Birthdays suck in particular because I can feel my daughter’s loneliness and desperate need for a friend.

Because I feel like a failure of a parent.

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Big changes for me

Big Changes.

I mean. 

BIG. 
CHANGES. 
Some things I can announce now and others I cannot. 


Last week I attended a conference that brought me to my knees. I walked in expecting to learn some Podcasting tips and walk out a better Podcaster. Instead, I walked in and was punched in the face with my revised-calling. I say “revised” because I was totally doing what I 𝓽𝓱𝓸𝓾𝓰𝓱𝓽 was my calling.

Nope.

I was wrong.

Well… it’s more like what I was doing lead me to that conference and that could be the “calling.” Sure. Fine. If that was my “calling” then what happened last week was my “yelling.”

Y’all. *FULL STOP* I was punched in the face by the Holy Spirit. 

I am re-doing my show (Warrior Moms) and have pulled the season and will be relaunching the show with a new element and sharing my testimony in the first episode. If you don’t know my story and want to know why “Warrior” is literally tattooed on my body and why I resonate with the word – this is it. 

The last thing. THE. LAST. THING. I expected when I went to this conference was to have my whole world flipped upside down. I was FINALLY settling into what I thought was a new chapter in my life and now I feel like I just skipped some chapters. I have literally sat in some uncomfortable but necessary space since late Thursday evening trying to sort though the newness of a newfound mindset and am working through some things.

At the same time, so many foundational blocks of my work since leaving corporate America have started to form a frame. Unfortunately, for this post, at least, I cannot elaborate on that part just yet but it is equally amazing.

2020 was a hard year for all and 2021- I thought was going to be a year where I lived in the lessons that I learned in 2020 but, on that note, I was also wrong. I ended 2020 with the loss of my favorite uncle and I started 2021 by launching my own company and then I lost my grandmother and a few days later I lost one of my best friends, then to add insult to injury, my dad had a heart attack. I did not give up, despite the set backs, I kept moving forward because that is what they would definitely want.

I didn’t realize that my moving forward would lead me down this road… but what an amazing road it is going to be. I cannot wait to share the news as it develops.

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We’re 2 Year’s Old!

UnSocially Acceptable turned 2 today!!!!

I did not know what was going to happen when I took up this mantle but I’m so glad I did.

What a wild, rewarding, amazing, thrilling, heartbreaking, unexpected, enlightening, and unforgettable journey towards self discovery it has been.

This blog and the Warrior Moms Live Stream it hosts have literally changed lives, raised awareness for so many causes especially Epilepsy Awareness, and helped connect people from all over.

I’m honored to see continual growth and engagement on this platform and look forward to many more years creating relevant and authentic content!

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Self Made

I walked away from a big salary and bonuses and a company that up until the pandemic let me do whatever I wanted and I was good at my job- probably one of the best they had in that role. Why? Because I wasn’t fulfilled. I was frustrated. I was stressed from the effects of the pandemic and my newly deemed “Essential” status. I felt that the word “Essential” should be reserved for first responders and medical staff not a sales and marketing manager. I felt that I was deemed “expendable” and I was.

My company, though I was a “favorite” by some, viewed me and all my coworkers as expendable and by extension our families were too. That did not sit well with me. My husband had lost his job and I needed insurance for Scarlett but that meant daily risk of exposure to myself while I was going through weekly treatments.

Around August, I had re-developed suicidal thoughts.

I heard the L’appel du vide more loudly than before, it was becoming hard to ignore. The company I worked for was in bankruptcy and that was a new level of stress. I knew something had to change.

My husband had now found employment and had Scarlett and I on his insurance. And then the “small procedure” that I needed to do way back in April (that my boss refused to approve the 3 days time off) now was going to be a full hysterectomy (which took 14 weeks to heal).

I tried to file FMLA and my company kept rejecting it. But I felt that if I stayed I would one day very soon answer the call of the void- I have before.

So, I made the choice that some days I regret and every day I’m proud of.

I chose myself, my health (both physically and mentally), and my family.

I quit my job with no back up- none. I have a “do whatever it takes without sacrificing my morals” approach to earning money and paying bills.

I started my own business and it has already opened so many doors, created new connections, and sparked new friendships. I feel like I’m stepping into myself for the first time in my life.

Decades worth of feelings of being wholly unfulfilled are being washed away. And yet, I feel like I’m doing everyone a disservice.

I promise to be honest in my journey and I have omitted a big part… People comment on my social media and message me that I look happy, I’m glowing, they love my vibe (which I think is my favorite compliment ever), they knew I would be successful… thank you for that- I appreciate you following my journey and the encouragement.

I no longer hear the call and I am very happy- most days.

I will tell you though, I’m not successful in a monetary sense. I’m not. I’m not making the kind of money anyone seems to think I am. I think people just assume that if you’re in business for yourself then you must be successful, if this then that? It’s not true. The life of an entrepreneur is rife with peaks and valleys or, in my case, mountains and an abyss (<– my current location).

I’m debating getting a part time job and resurrecting my old bartender skills or as a cashier at a grocery store. No joke. I’m not too good for honest work and wages.

This is what actual fighting your way to the top looks like. Support your small business friends- were humans with real back stories trying to make it work just like you are.

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From GED to MBA

I’m a high school drop out. Does it surprise you to know that?

That’s a serious question.

I don’t hide that I’m a high school drop out from anyone it is actually something I’m proud of.

I dropped out because I refused to play the game that an ego-tripping judge wanted to play all because I got mono and missed a bunch of school but still kept my grades up. I refused to be bullied and shoved into a box I didn’t belong even by someone in our judicial system who would lie to my face telling me my weekly drug tests for 6 months were for my “own good.” 200 hours community service too. I passed every drug test because I wasn’t on drugs and the silliness of having to miss school each week just to take the drug test brought on an additional truancy charge! I wasn’t the delinquent he wanted me to be. But he sure did try to teach me a lesson. (BTW I was 17, grown people get harsher sentences for worse “crimes” than mono-induced truancy 🙄)

He didn’t know me and he didn’t care to know me he had an idea that since I missed school I was a piece of trash he could make an example of. He didn’t know that I’m a fighter. He didn’t know that I stand up to bullies. He didn’t know that I would take the “hard” road over playing his game. The day I turned 18 I signed myself out of school. I immediately tested for my GED and at my next court date, I told him it was over I refused to allow him to dictate my life until graduation and hold me to ridiculous standards because I had the misfortune of contracting a virus.

Game over, dickhead.

I have to thank that judge though. He woke something in me. He woke a fighter. He woke the part of me that says, “Bring it” when shit gets tough. He is the starting point for the Warrior you see today.

But if you’re still with me I do have one more point to make. You are NOT defined by ONE decision or moment in your life.

If I let my dropping out of high school define me then I wouldn’t be the person I am today. One moment and one decision (good or bad) should not be a driving factor for who you are years later. Yes it can contribute to who you are BUT IT DOES NOT DEFINE YOU.

If I was just a GED I would never have become the MBA.

There are going to be times where you have to make a choice or do a thing that you (and others) may try to define you as but you are a human and you are allowed to live your life (without infringement on others).

You are allowed to move past that moment.

You are allowed to grow and be better than yesterday.

You are allowed to make mistakes.

You are allowed to do things intentionally.

You are allowed to choose the hard road.

Do not ever think that because you made a choice years ago that you cannot move forward from it – that’s why you were granted this life and these days.

Friends, I implore you, if you are struggling to move past what you are holding on to as a “defining moment,” seek counseling be it through a friend or a trained professional. Just talk it out. Because you only get to be you once.

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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!

Click here to join our Facebook Community!

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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)

Click here if you would like to join our Facebook group called the Warrior Moms Community!

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Quarantine: Can We Talk About Mental Health Now?

I believe that proper Quarantine Etiquette dictates that I am supposed to start this blog with, “The world has changed so much…” I mean, it has, but at the same time that phrase and many other Covid catch phrases like “We’re all in the same boat,” “the flu is deadlier,” “ma’am, you still have to wear pants at the grocery store,” and just about every news headline ever written in this weird-ass time is annoying to me.

Actually, a lot of things are annoying to me. Why? Because, I am stressed out. Duh! My husband lost his job, my check isn’t big enough to cover all the bills and since we were under his insurance I had to switch us over to mine and that took a $650 hit to each paycheck (my husband’s job it was $400 each paycheck).

Financially, we were hit hard. Our daughter’s medical bills were already taking us down the drain and now this.

My company actually did do layoffs and I survived which left me with a lot of survivor’s guilt and whole bunch of extra work in my lap. More work and less pay. Wonderful!

But this isn’t about the hardships we are facing on a personal level. No. We have stress but I know that there are some people who have it worse and others who have it better. That is just how life is.

However, what I am here to talk about it is mental health.

The world, the entire world, has just experienced a crash course in Mental Health 101. Every day I open up my social media to a new friend who just had her first panic attack, to a post about starting the day drinking, to a frontline worker that is so worried that they are going to bring the virus home to their family they are hiding in their car crying, to an essential worker doing the same thing, to another friend who is watching their spouse fight for their life alone in the ICU and she is left home alone to wait and worry unable to even communicate with him, to a young mom who lost her job and is so worried about her situation that she now has shingles (actually 2 friends have it).

Every day it is something new and I am so tired of seeing the replies to the posts of “we’re all in the same boat, just hang in there.” NO! We are not in the same boat. As I mentioned above some have it better and others do not but that doesn’t fucking matter- we are all experiencing new and real shit and we are allowed to feel a certain type of way. I think a more accurate assessment is that we are all on the same planet, dealing with the same virus, and after that is where things start to differ for each person. So, if you must lump us into a group, you can say, “we’re all on the same planet,” whatever.

I want to say, thank you to my friends who are real and raw in their emotions who are out there telling people that they are not okay. Because IT IS OKAY TO NOT BE OKAY and I will scream that from the roof tops as quickly and as loudly as I type the words on this screen (I am a fast and loud typist).

Talk about your mental struggles- put it out there! THAT IS NORMAL. We aren’t meant to know and understand the secrets of the Universe and so shit gets weird sometimes and we have to process that and we all do that differently. Friends, I think we can all agree literally nothing makes sense. I mean, last week the government was denying the existence of UFOs and now they are confirming it. WHAT?! Seriously, why now? Wasn’t it like 7 months ago everyone wanted to storm Area 51- where was the government’s confession then? I digress…

I think it is really hard for some people to reconcile that the world changed over night. We all saw it happen and we are living it day to day but we cannot align our previous reality to our new reality, and that is okay. Like I said, we all process things differently and in our own time.

But while Covid captivated the attention of our world leaders and pretty much everyone else… something else was taking a foothold in our society.

Depression.

Anxiety.

Panic.

Fear.

Stress.

Hopelessness.

Suicide is now on the rise.

Domestic abuse is on the rise.

Child molestation is on the rise.

Alcoholism is on the rise.

Why? Because, as a society, we don’t know how to handle the hard shit that gets thrown our way and when we do make our cries for help people down play it and tell you that you are over-reacting.

It isn’t our fault- it has been ingrained in our culture that we have to ignore the bad things – just pretend they don’t exist; and, for many, Covid and quarantine are the first bad things that they cannot ignore.

I am somewhat sorry to say that we were raised in a world that doesn’t exist anymore, like I said, we all just got a crash course in what it is like to battle for stability with our mental health.

So why not move forward into this new world where we raise our children to recognize the signs of an inner struggle within themselves and others?

Why not teach them that it is okay to not be okay?

Why not teach them that when we struggle with our own mental health that we need to voice that and we will embrace their vulnerability and help guide them to the other side of that storm?

Why not teach them not to shy away from a friend that confides in them that they, too, struggle with mental health?

Why not talk about mental health, we all see how vitally important it is to our very basic need to survive?

The world has changed. That is a fact. What we are left with is an opportunity. We have an opportunity to take this new world and mold it into something better for all of us… I hope we do.

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St. Valentine, Heartbreak, & MAD

Valentine’s Day was another hard day of being a parent but not in the sense that my child was disobedient or that I was left to clean a messy home all by myself… I long for those days now.

No, yesterday was hard on my soul. I was heartbroken to learn that my child has multiple devastating genetic mutatiosn that are partially responsible for her onset of Epilepsy. Two of the mutations are known but confounding and then she has 1 mutation that has not been mapped by science. This leaves us with hardly any answers and lots of new questions particularly regarding her life and longevity.

To learn that a partial source of Scarlett’s issues are not because of the TBI but linked to these genetic mutations was jarring. Our whole life was based on this. Could we have got her help sooner if her previous neurologist and team were more aggressive?

This news broke me down. I was in a tailspin. All the compose I maintain and receive “compliments” on went out the window. I was the very definition of “Hot Mess.”

My heart was broken on Valentine’s Day. St. Valentine, the Patron Saint of Epilepsy.

Irony at it’s finest.

I ugly cried for hours. HOURS. I cried so hard I could hardly open my eyes. I have never cried that hard in my life.

Through the darkness a sliver of hope remained on one of the mutations (the gene that they believe to be the most devastating) was only a single deletion rather and a double deletion- which is considered terminal.

I believe that we have one of the best (if not the best) Epileptologists in the world and after speaking with her she was able to put our mind at ease that our Sweet Girl is an anomaly and not necessarily in a bad way. Yet, she advised us to begin the Modified Atkins Diet (MAD Diet) immediately to help support her mitochondria and hopefully stave off the seizures. We met with a dietitian that same day and began the diet the following day. We were also advised to meet with a Geneticist as well as a doctor that specializes in Mitochondria. Those appointments are pending.

Many people have asked us already, just want exactly is the MAD diet. The MAD diet is basically the “Mainstream” Ketogenic Diet that everyone is on. However, for those with Epilepsy there is a lot more at stake. Meaning, if you, a non-epileptic, fall out of ketosis, the only thing that happens is that you have to work to get yourself back in. If my child falls out of ketosis, she increases her likeliness of a seizure- so not good, right?

So what does this involve? For our sweet girl, strict control of her macros. They don’t joke around either. We had to change more than just her food. Did you know there are carbs in lotion, shampoo, conditioner, deodorant, and toothpaste, just to name a few? Ya… we didn’t either. There is a definite learning curve and I will discuss what we have learned and are doing in another entry.

Thank you for reading.

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