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.

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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

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A Positive TESTimony

Anthony, 31, is a single father of two from Richmond, Texas. He was born with a clubbed foot and during his life he had numerous surgeries and years of physical therapy to correct the foot. In May 2016, at the age of 28, Anthony and his doctors decided that if he was going to have any quality of life that it was time to amputate his leg.

The other day I sat down with Anthony to discuss his life since the amputation and how CBD has helped heal him, both physically and mentally, since the surgery.

Anthony, what type of amputation did you have? Ertl, it is a below the knee operation where the surgeon takes a piece of bone and creates a bone bridge between the tibia and fibula.

With this Ertl amputation do you think you are better off in comparison to other amputees? How so? By far. It allows me to be more weight bearing, which in return allows more impact with almost no pain.

Source: Taylor, Benjamin C. and Attila Poka. “Osteomyoplastic Transtibial Amputation: The Ertl Technique.” The Journal of the American Academy of Orthopaedic Surgeons 24 4 (2016): 259-65 .

We have all heard of phantom limb syndrome, when the body still remembers the feel of the amputated body part, but what we don’t really hear about are the phantom pains associated with the syndrome. The Mayo Clinic notes that the pain can be described as, “shooting, stabbing, cramping, pins and needles, crushing, throbbing, or burning.” Can you please describe what a phantom pain feels like for you? There’s 2 types of phantom episodes. One is “phantom sensation” where I pretty much always feel my foot. The other is “phantom pain” and this is the one everyone associates as a generic term. The pains I have experienced so far have been minor electrical zaps/nail thru the toe feelings that are intense, but not constant, foot being crushed in a vice grip, feels like my foot is being slowly ripped off, broken bones (sometimes several at a time) or just that itch you can’t scratch that will drive you mad. It all really depends really.

What did your doctors prescribe to treat phantom pains? Narcotics and Gabapentin.

But you didn’t like the prescriptions because they didn’t grant you true relief, how so? Did you find anything to bring you relief? I had this surgery to free my life, I didn’t want to spend the rest of my life tied down on pills. They never actually helped. In fact, they made my whole situation worse. Finally one day I decided I wanted to do it on my own, not knowing what I was in store for. I lost total control of all my phantom pains and actually started to lose my shit. That’s when I decided to try cannabis.

You started treating with cannabis and found relief? How did cannabis help? Yes. I took one dose of cannabis and was instantly better. When I say better, I mean I was 100% better.

Other than what you just said, did you notice any other changes within yourself that you attribute to your use of cannabis? Since that day I have never taken a single prescription pill for anything. Every single doctor I speak with has been floored that I don’t even take Tylenol for my leg. I have noticed a complete difference in my life.

Recently you switched to CBD. Why did you make the switch? I made the switch because I saw what a difference it was making in my sister’s life. I watched my sister change overnight from someone who wasn’t able to get out of bed most days because she was so sick from her autoimmune disease to someone who barely seemed sick at all. She’s still fighting a battle but her quality of life is so much better. After seeing that, I had to see what it would do for me.

Have you noticed any other positive changes through your use of CBD? My body feels so much cleaner without putting that poison [prescriptions] into it anymore. I wake up everyday before the sun comes up fully energized and ready for the day.

If you had one thing to tell others who are like you, amputee’s battling phantom pains, what would you say? I would say to throw out the poison and actually get your life back.

What brand of CBD do you use and why? Green Compass Global, like my prosthetics, its all about the quality.

You can buy Green Compass Global CBD HERE.

Sources:
https://www.mayoclinic.org/diseases-conditions/phantom-pain/symptoms-causes/syc-20376272

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Let’s talk about hard things!

It is going to take me a minute to get to my point so hang in there, there’s gonna be period talk first but not like gross-gross period talk.

I have ALWAYS been one to discuss my flow because I feel like it is something that SHOULD be discussed – it is natural. I mean, half of the world experiences a menstrual cycle at some point. However, what we don’t realize is that so many women are NOT experiencing “normal” cycles. Also, with my medical history, more people have investigated my uterus than I can actually count so any “shame” I would have about it flew out the window years ago.

I have had PROBLEMS ever since Aunt Flo first made her initial stop to visit me back when I was 11.

Side note, I started my flow on my grandmother’s watch and that alone was the worst thing ever.

I used to miss school all the time because my period was a monster but back then the doctors were quick to dismiss my issues as “dramatics.” I will never forget the 3rd doctor I was taken to see and she said to me, “Honey, you need to suck it up. We all have pain. You are costing your parents money.” I remember being so deflated because I could not accept that this amount of pain and the basically never ending cycle was what I was going to experience the rest of my reproductive life. Thankfully my mom took up the battle for me- she wasn’t going to stop until we had REAL answers.

My teenage years were pretty awful and I was so depressed and in a lot of pain. I was taking birth control that was so strong I had morning sickness. My classmates made me feel like I was a misfit for missing so much school due to being “sick” (because back then you couldn’t tell people that you had a period from Hell as that would be inappropriate to discuss). And, so, for years my parents had me on all the “typical” antidepressants such as, Paxil, Zoloft, and Effexor to help me “adjust” to my fate.

My 20’s were spent trying to get control of my now surgically diagnosed Endometriosis and PCOS. I was blessed to have one child and then suffered miscarriage after miscarriage and underwent unsuccessful fertility treatment twice.

Looking back now I feel like EVERYTHING is related in one way or another. I believe my Endometriosis, PCOS, Infertility, Miscarriages and Autoimmune Disease are all connected. In fact, we know Endometriosis and Autoimmune Diseases are both based in inflammation. However, that is a post for another day.

My Endometriosis is largely “under control” in comparison to how it used to be. I have had many scrapings, D&C’s, and ablations and I have just learned to deal with the pain. I have found some relief when using CBD both topically and orally as opposed to abusing Advil and Tramadol. My PCOS is always going to be a struggle – especially with weight.

My periods, on the other hand, are still fucking awful and I will paint no picture to the contrary. In fact, the only picture one could invoke would be a crime scene. You know, I use to get so mad at the inspirational messages on my pads, “Have a happy period.” Have a happy period?! TF are you talking about pad? I am bleeding like someone severed my femoral artery while my uterus has my soul in a death grip during a lightening storm inside my body and I still have to do everything I am supposed to do in a day. Fuck you and your “happy” periods, just let me be in my misery. I would almost rather have my pad tell me a fun fact like a Snapple cap or give me a a tip on how to get blood out of my good undies because my period showed up early (btw, hydrogen peroxide works great).

You see, a period like the above is NOT NORMAL but to someone who has Endometriosis- I just hit the nail on the head!

And here it is, the point behind this post!

We need to talk about hard things.

Ladies People, don’t take things at face value. If you feel something is wrong seek clarity and if you feel like a diagnosis is wrong, get a second test done or see a new doctor. For the most part, I believe that doctors do genuinely want to help most of the time BUT a lot of them rely on text books and if you don’t fit a text book (i.e., an 11 year old girl with severe endometriosis or a 34 year old female that shows symptoms for a very rare autoimmune disease that doesn’t typically hit until the late 50’s) the doctors are going to be baffled because a lot of doctors have to operate within the guidelines of their license and the medical boards that they answer to.

I don’t do these posts because I like the attention. In fact, I often want to sign off of the internet for days until the posts blow over because it is hard to put it all out there. I don’t think it will ever get easier for me. But I will tell you this, the more I post about the hard things the more people come to me and say, “This is me too- because of your posts I saw a doctor and I am feeling so much better now” or “I have RA and wanted to take less of my medications and my doctor approved your CBD and I am feeling SO MUCH BETTER.”

Why not be real with each other? And now I am about to sound like the hippie I am, be real with each other and through that truth we can help each other. I can tell you I read and relate to the real posts on social media way more than I do the perfectly edited IG picture of someone sitting on a windowsill pretending to read Wurthering Heights.

Don’t get me wrong, I love a good photo but I love real talk and being authentic. That’s why this blog is called UnSocially Acceptable because I want to talk about the things that are largely considered to be unacceptable in a social gathering or on social media… natural things that should be talked about so we can all know that we are not alone. So many people struggle. I struggle every day and I would love to hear that someone relates to me, there truly is strength in numbers. I really do believe that.

Y’all, the internet was invented for 2 reasons:

  • 1- to share hilarious and adorable animal videos; and,
  • 2- to connect with others.

It is my goal to make my connections mean something. As I get older I find that the most valuable commodity is time and I want everyone I know and love and all the people I will eventually know and love to have it in spades.

Thank you for reading, Trina

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