June 2019 marked 2 years since my oldest son, Jayden, began having seizures. I have fought for his diagnosis for almost the entire 2 years. This journey to help my son has not been easy, but I refuse to give up.
It was a beautiful June afternoon. We had a new home and a new community. New playground to play on.
After work and school, I decided to take Jayden and his little brother to the playground our way home. My husband was already there fishing. Jayden was 7 and Jaxson just barely 3. We began swinging on the swing set and Jaxson wanted Jayden to do an underdog push for him. As Jayden pushed him and came out from under his swing he paused. His head slumped and he was drooling. Still standing upright, I assumed he was pretending to be a zombie, as he often did.
Me: “What are you doing Jayden?” Jayden: silence Me: “Knock it off Jayden.” Jayden: silence
I grabbed Jayden and tried to startle him, he started grabbing at me at this point but in a weird manner, I grabbed his hands and looked around for his dad, I started to panic. Finally he took a deep breath and was back. Not sure what had happened and thinking it might be heat related, I loaded the boys up and headed to the house.
After describing what happened to my husband, he immediately said it was a seizure. My husband’s younger sister is epileptic, so he had seen this behavior before.
We needed to get Jayden to the emergency room.
The next few months were extremely frustrating. Our first few doctor & hospital visits, EEG tests were inconclusive and MRI scans were “normal”.
We were told he was faking the seizures for attention.
Then I was told it was psychological. Finally, after 5 months of uncontrolled seizures and fighting with doctors we got a diagnosis of focal epilepsy. It took the third neurologist to find the abnormality on his MRI called a polymicrogyria (PMG). We were nervous and relieved at the same time.
At least we can make the seizures stop, or so we thought.
Each time we gave him a medication, he either had an allergic reaction, negative side effects or his body just eventually got used to the medication. Once in 2018 we did get very lucky, Jayden went 5 months without a seizure. In July of 2018, he had what is called a break through seizure and after that began seizing daily, sometime multiple times a day. After many doctors’ appointments and more medication failures I decided do some research on the effects of CBD on epileptic children.
I learned of many children having great success with CBD products.
The effectiveness helped them lead more “normal” lives with minimal to no side effects. I mentioned CBD to one of his doctors and she aired on the side of caution but told me to do my research and keep her involved if we decided to add it to his treatment.
The legalization of CBD products varies state to state. Luckily in Virginia, CBD oil and products are legal as long as they have less than .03% THC in it.
- I spoke to many local shops and online forums trying to educate myself more
- I learned there are so many benefits from using CBD such as relief from anxiety, behavior issues, and helps to sleep.
We tried the CBD oil first, but for a child holding a bitter tasting liquid under his tongue for up to 15 minutes was not ideal. Then I came across CBD gummies. They had flavor and were the equivalent to taking a gummy vitamin each day. We started him on 25mg CBD gummies once a day at bed time, hoping it would help him have a more restful sleep. It did!
We saw an improvement in sleep, behavior and seizure activity
18 days after the CBD was added. Jayden had a seizure. I was discouraged and scratched my head as to what had changed? . After some research, I found out the ones we purchased only had 15 mg of CBD in them. Almost half less than what he had been on! After speaking with his doctor, she informed me that the CBD can decrease or increase the effectiveness of his pharmaceutical medications. We made a medication adjustment and agreed to keep him on the same dose of CBD, being more vigilant of the shapes we buy.
Currently, he is on the eighth medication combination, CBD gummies, and some supplements to help with energy and sleep.
He has gone 45 days without any seizure activity.
Jayden’s journey hasn’t ended. While I am grateful for this, I know to prepare for when the medication stops working. At one of the best hospitals on the east coast of the United States, we are seeing a new epileptologist, which is a neurologist who specializes in epilepsy, and having new tests done to gather more data on his condition so that we better understand how to treat it.
Now his diagnosis is intractable focal epilepsy. Intractable means uncontrolled by medication or drug resistant. Typically patients are diagnosed as intractable after 2 or 3 medications. It took us 8 medication before receiving the proper diagnosis.
Had I listened to the first set of doctors, my son could still be having uncontrolled seizures or worse. I did not know much about epilepsy 2 years ago, but I have thoroughly educated myself so I can understand and work with his doctors. When he is hospitalized, I talk with nurses and doctors before anything is done.
I will not let them blindly treat him or change decisions I have already made.
Rachel Cyr Bio
My name is Rachael Cyr and I live in Northern Virginia with my husband, Robert and our 3 boys Jayden, Brantley, and Jaxson. Robert and I have been married for 6 years and together for almost 11 years. Jayden is the oldest and was diagnosed with epilepsy in 2017. Brantley is our angel baby that passed away in 2012 and Jaxson is the youngest of the three and is starting school this year. I work a full time corporate job as well manage my blog, Not Your Average Momma, where I enjoy sharing my stories and journey through motherhood.