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