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.

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!

Epilepsy: Modified Atkins Diet (MAD)

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!

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.

Brave Girls Can Cry

Epilepsy continues to be hard. It saddens me to think that this illness consumes so much of our lives. We became a family of 4, myself, my husband, our daughter, and Epilepsy. Our lives have changed and I know there are so many more changes to come. Some of those changes we already know about, such as starting her on the Modified Atkins Diet and possible brain surgery and/or an implant but most changes will be unknown.

I continue to write as a weird form of therapy and because I genuinely hope that this helps make the experience easier for someone else. Because… maybe this pain we feel might be more tolerable if we knew that we helped someone with our story?! So, I write. Sometimes I publish but most of the time I delete. I delete because there’s a part of me that feels like people don’t want to hear me “complain” or I think that maybe people will think that I have given up hope? I don’t know; but, these are the thoughts that pop up in my head.

A few months ago, I was getting certifications in both Cannabis Coaching and Life Coaching and I was creating plans to really broaden my horizons. Now. Now, I am crying when ever I think I can squeeze it in without anyone catching me or calling me on the phone, mostly in my car or the shower. I don’t think about my future, I think about each day as it comes, minute by minute, that’s all I can do. When I think about the future, I get overwhelmed.

I have aged. Wrinkles that weren’t there 6 months ago are there now. I look tired all the time. I have gained a ridiculous amount of weight because I eat my feelings (and I have a lot of feelings right now).

There are many things I wanted to do with my life and there were so many more things that I wanted to do with my daughter but, right now, that’s all on hold. It isn’t a “never” but it is most assuredly a “not right now.”

I wanted so much for my sweet girl. It hurts me to think that these seizures are her new normal and that her day is dictated by “avoiding triggers.”

I am grieving for so much and I am incredibly angry. However, what I am feeling is nothing compared to my daughter who has had her life altered so drastically with no explanation as to why!

My daughter doesn’t get to experience a “normal” teenage life and as someone who was already special needs- this makes her feel even more different. It breaks my heart because she doesn’t understand what is happening.

I try to hide my feelings from her. I don’t want her to see me upset and think that this is her fault because it is not. When she was in the hospital she kept blaming herself. She said “my brain is stupid” and “I wish I didn’t have this brain.” It took everything in me not to break down. I want to be brave for her but my soul aches.

She cries a lot and I no longer pat her back and say, “there, there” and tell her everything will be okay and to dry her eyes, like I would have before Epilepsy when her problems were less… well… soul crushing.

No… no, now I hold her and let her cry…

I tell her that I love her with my whole heart and soul. I tell her that I will always fight for her. I tell her that I will do everything I can to find answers and solutions to this problem. I tell her that I will raise awareness so she can feel safe in the world. I tell her that it will not be easy and I ask her to be my beautiful, brave girl.

And, I tell her that “brave girls can cry.”

Epilepsy is F*in’ Hard: Part 1

A few months back, I wrote an entry about my daughter having a seizure. Of course it was a scary event but I cannot tell you how naive we were. Our lives have been turned upside down since that day and

I actually started that above paragraph on December 7th, 2019, and had to stop writing because my daughter said to me that she wasn’t feeling well. I have learned to listen to her even if I think she is crying wolf. She was not. That was the start of 16 days in the hospital, 15 of which were in the Level IV Epilepsy Monitoring Unit here at Children’s Memorial Hermann.

When my daughter first had a seizure, her doctor was quick to dismiss it as a one-time thing. When my daughter had her second seizure 13 days later, she was hospitalized. We spent 3 days at a children’s hospital in Houston and were put on Keppra and told to follow up. We had a 3 month honeymoon period and then our daughter’s seizures returned. We maxed out Keppra. They added in Onfi. Insurance refused to cover Onfi. She started clustering and Status Epilepticus became a real concern.

Sitting in my daughter’s hospital room, I became angry because other than “she has Epilepsy” we didn’t know fuck-all about this situation we found ourselves in.

I joined a Facebook group for parents who have epileptic children and I quickly realized that the odds were not stacked in our favor. If I was going to walk this path with my girl, it was obvious that I would have to first clear the path for her. *Rolls up sleeves* Not a problem, I am her mother, this is what I must do for her. BUT if I am going to do this I am going to at least document it so that way when another parent has to walk this same path they can use this as a starting point. As always at UnSocially Acceptable- my goal is to help with my story. No one should feel alone in this world- especially when you are worried about your child’s life. One of the hardest parts to swallow about an Epilepsy diagnosis, once diagnosed with Epilepsy, that may be the only bit of information you get.

I posted in the Facebook group asking parents what they wish they had known about Epilepsy and as one parent pointed out, I fell into a Rabbit Hole. So this is going to be the first entry in a blog series, Epilepsy is F*in’ Hard. I don’t want this entry to be very long that people find it cumbersome. So I will work on other entries and try to group them by topic, for things such as medicine, CBD, Epilepsy-related products, Epilepsy-related resources, and other miscellaneous Rabbit Hole topics.

To start, the overwhelming response was that no child is the same as the next. You KNOW your child (which is true, I have accurately predicted my daughter’s seizures every time). Follow your intuition, your “momtuition” is almost never wrong and even if it is, this is the one time it is wonderful to be wrong.

Stemming off of that thought, it is okay to call your Neurologist or Epileptologist after hours, there is no need to justify your concerns about your child to anyone else- if you are worried about your child- your concerns are valid. End of story.

Ask questions, doctors are people too. People no matter the amount of education or years of practice in an area can make mistakes. That is why the term “practice” is used, medicine is still a developing field and things change daily. They are human, you are human, human error exists. ASK QUESTIONS.

Educate yourself on all things Epilepsy because you can’t ask questions if you don’t have a baseline on the topic. I started with this book and it really helped: Navigating Life with Epilepsy by David C. Spencer, MD, FAAN. This book will really help you understand terminology and the different types of seizures, medications, treatments, and so much more. This is my bible.

SUDEP is a fear we all have. There will be no shortage of companies tying to capitalize on your real fear of SUDEP, sorting out the bullshit from the needed is hard. I plan to write an entry of common products and companies to trust.

Medication: this is a touchy subject. These medications are literally changing the chemistry of your child’s brain. There are side effects and some of them are major. You have the right to question the medication. You have the right to ask your child’s doctor if this medication is the best available option. You are your child’s advocate.

Not to sound bleak but there is a real possibility that a medication will fail your child. This is frustrating. I am sorry. Keppra failed my daughter. BTW, I choose to say it that the medication failed my daughter rather than my daughter failed the medication because I don’t ever want my daughter to think that Epilepsy is her fault.

Cannabidiol or CBD is helpful for a lot of a families. My family uses Green Compass Global and it was approved by her Neuro team and her Epileptologist. We use a full spectrum CBD in concert with her Antiepileptics. This is the company that I own a franchise with and the only company I trust (read previous blogs where I talk about this company). There are no shortage of opinions of CBD in the Epilepsy world and there are some great products but again, I trust my company. The only FDA approved prescription for CBD is Epidiolex. Many families have seen great changes and help with just over the counter CBD but that is a discussion for you and your doctors.

I will likely do another blog entry on CBD and epilepsy as those who read this blog know how strongly I believe in cannabis.

Genetic testing and updating genetic testing is important, it can really help narrow the field and help your child’s doctors decided on a treatment plan. Some insurance will cover it and some insurance won’t but I, personally, think genetic testing is worth it. Keep in mind, getting the results takes a long time. It is not like television labs that can return the results to the detective before the next commercial break.

There will be a lot of waiting. Waiting on the genetic testing. Waiting for appointments. Waiting for insurance to cover or approve something. Waiting on the new medication to pass or fail your child. Waiting to titrate up to the next dosage and wondering how “protected” your child is. Waiting on the next seizure…

Parents, PTSD is real.

I tried to explain this to my friends and family and they just don’t get it (but they will). Epilepsy is hard. I was so ignorant to the struggles one goes through when Epilepsy enters their lives. For something so common, HOW DOES THE WORLD NOT KNOW ABOUT EPILEPSY?

I can tell you that I am not okay... and that is okay. Each time I hear my child say my name, it no longer sparks joy in my heart because, more often than not, my name is the last thing she says before she has a Tonic-Clonic Seizure. I am the person she calls out to for help. I have 4 seconds to get to her from the time she says my name to the time the seizure changes from focal to generalized. Now… the sound of my own name sparks fear and worry- my heart drops every time she says my name. The guilt I feel and the emotions I go through every day breaks me. I am not the person I was 5 months ago… I am not the person I was 2 months ago. I feel angry. I feel like Epilepsy robbed me of the joy of being a mother. I struggle to find balance between taking care of my child/managing her safety and actually being a parent to her. I cry a lot. I am distracted. I feel broken.

But NONE OF THIS is my daughter’s fault and what I feel is a drop in the bucket to what is going on with my sweet girl who doesn’t understand what is happening to her. She is so lonely and depressed and it breaks my heart. Her life has changed so much and so fast. Like many children who have Epilepsy, my daughter is cognitively delayed. Which, sparks more anger in me, because I find myself wondering “why her?” a lot. And, when you start down that path of thought- you will find a lot of emotions.

I will never have a good night’s rest for the remainder of my life. My child will never be cured of Epilepsy- she will only ever be “Seizure Free” and that timeline starts over every time she has a seizure. She once went 3 months…

Parents this is very tough road and not many people will understand what you are going through. Your friends and family will not understand that your child NEEDS their medication at the same time every day or that you have to randomly cancel plans because you have this feeling in your gut that won’t go away… It is important to remember that like myself, the world just doesn’t know because it hasn’t happened to them but if you find it in your heart to be vulnerable about this- people may listen and more people may see that this is something we need to discuss and know more about. At the very minimum, Seizure First Aid is something that must be taught.

I am documenting my daughter’s struggle with Epilepsy not to capitalize on it but because I immediately realized that the world is just not prepared for Epilepsy. My daughter has to live in a world that is not meant for her- a world that is not safe for her. I am going to do everything in my power to let the world know she exists and that there are many others like her that exist too.

God willing, there may be a day when she calls out my name and someone else is closer to her than I am… maybe they will be brave enough to help her.

Seizure the Day

We had a very eventful 4th of July holiday. At the risk of sounding cliche, it was, at first, a day just like any other day. Holidays are usually very low-key in my household because my husband usually has to work as was the case this day too.

I took our daughter to the neighborhood pool where we spent two hours of the afternoon there and then we went home to wash up and cook dinner.

Just after dinner we sat down to watch Houston’s Freedom Over Texas event on TV. My daughter asked for a dessert so I went into the kitchen to prepare it. A few minutes later my daughter made a weird noise. With my back to her, I asked her what it was. No response. I let a few seconds go by and she made another weird noise. I, again, asked her what was going on. No response. I finally said to her, “Hey you need to answer me, what’s going on?” I turned around, and started walking to the couch and that’s when I realized she was having a seizure.

I called for my brother to help me but something was “off” about this seizure and I told my brother to call 911. EMS was at my house in less than 2 minutes (no exaggeration). My daughter was in and out of consciousness and was now complaining of a bad headache and vomiting. We thought it was best to take her to the hospital as she, at the very least, could use fluids after all the vomiting she went through.

Annnnnd here’s the backstory:

When my daughter was born, literally during the birthing process, there was some sort of accident and she was left with a Subarachnoid Hemorrhage (SAH). This caused my newborn to have Grand Mal (now called tonic-clonic) seizures. My daughter, on her second day of life, had already had a Spinal Tap, X-ray, MRI, CAT Scan, EEG, and so many more tests.

The doctors had no idea the extent of the damage her brain sustained and it was going to be one of those “wait and see” things for development.

We were also told that she will be subject to seizures the rest of her life.

We monitored for years with her neurologist and there were no seizures, so we were released from their care.

We thought we dodged a bullet.

There was one time when she was in kinder that she had a small seizure but after a battery of tests and monitoring they determined that it was an isolated incident and that the seizures weren’t back.

Over the last few months, I have noticed my daughter in what I thought might be a postictal state – but as quickly as I noticed it she would come out of it and brush me off. I thought it was misplaced worry.

The event on the 4th of July made me realize our seizure-free honeymoon is over.

This seizure was bad, not tonic-clonic bad, but her postictal state lasted nearly 3 hours, we are told the average is 30-60 minutes. They told us she would be exhausted and she’s been resting since we got home from the hospital right at midnight on the 4th/5th.

The freedoms she once enjoyed, like having her bedroom upstairs, bathing by herself, playing on her phone or tablet, swimming and so much more were taken away from her just like that (she understands it is for her own safety). She’s a bit bored since she can’t really engage with electronics and so I am trying to find “fun” things for a 13-year old to do.

We have since spoken with her PCP and she has an appointment on Monday. We are also looking for a new pediatric neurologist to discuss testing, treatment, and any options we may have.

I have had so many people reach out to me regarding her and lots of people have brought up CBD as a possible cause of the seizure. She does take an all organic, hemp-derived extract, CBD Isolate that comes with a Certificate of Analysis (COA), she gets 250MG one time a day before bed. She had not had any the day of the seizure. We did tell the emergency room physician that she takes CBD daily and that she had not had any, the doctor said that their was no correlation with her seizure and her use of CBD and we needn’t discontinue her daily dose.

We give her CBD because of the brain damage she had sustained from her SAH. CBD can be neuro-regenerative and she has made amazing strides with her developmental delays since starting CBD.

In no way do I think that the CBD takes contributed to the seizure, in fact, CBD is actually used to control seizures and that, in a lot of ways, is the main reason for CBD’s initial rise in popularity. Her seizures at birth and resulting brain damage from the SAH are the reasons I began my investigation into cannabis for medicinal use.

SHE IS THE REASON I BELIEVE IN THIS.

Thank you for reading, Trina