In addition to PANDAS/PANS my daughter is also diagnosed with epilepsy.
This week my daughter is officially seizure free for one year! Her last record had been for 10 months. No matter what happens this day forward, she has reached a place of where I never thought would be possible for these past 7 years.
What are Seizures and Epilepsy?
Seizures are abnormal movements or behavior due to unusual electrical activity in the brain, and a symptom of epilepsy. Seizure disorder is a general term that it is often used in place of the term ”epilepsy.”
When my daughter’s seizures started they were infrequent, but as her health seemed to decline, the frequency of her seizures increased. At the peak of her PANDAS/PANS illness, she was having seizures multiple times per week, sometimes daily. For most with epilepsy, the seizures last seconds to no more than 10 minutes. This was not true for my daughter’s, however hers lasted for 15 minutes to the longest being 45 minutes. Seizures are not the most common symptom of PANDAS/PANS. Movements and tics are commonly associated with PANDAS/PANS, because the part of the brain that has inflammation, the basal ganglia is associated with a variety of functions, including control of voluntary motor movements, procedural learning, habit learning, eye movements, cognition, and emotion. So as her inflammation increased so did all of the symptoms, and as she healed it led to less inflammation in her brain which meant less seizures.
PANDAS and PANS sucks and so do seizures!
If you or anyone you know has ever had a seizure you already know this. Not only do you have to deal with the actual seizure, but there are the after effects as well known as postictal state where you may experience severe brain fog, coordination difficulties, as well as verbal difficulties and anxiety. With my daughter, she would recover with some rest by the next day but usually has residual brain fog and anxiety for up to a few weeks. For a child attending school this can be unbearably difficult for concentration, attention, and school work.
Anyone Can Have a Seizure
One of our first doctors that set us on the road to recovery said to my daughter that anyone can have a seizure, it just depends on the threshold or susceptibility of the individual. One out of 10 people will experience a seizure at some point in their lives, according to the Centers for Disease Control and Prevention. Doctors may diagnose someone with epilepsy after having two or more unprovoked seizures. There is a wealth of information on the Epilepsy Foundation website: https://www.epilepsy.com/learn/about-epilepsy-basics/what-causes-epilepsy-and-seizures
Epilepsy Diagnosis
It took a long time for my daughter’s seizures to get a formal diagnosis of epilepsy because when she had an EEG(electroencephalogram), they weren’t able to detect her seizures due to their location in her brain. An EEG is a test that detects electrical activity in your brain using small metal discs (electrodes) attached to your scalp. Your brain cells communicate via electrical impulses and are active all the time, even when you’re asleep. This activity shows up as wavy lines on an EEG recording. Because her seizures were starting in the basal ganglia, the activity was too deep in the brain to register. She also had an MRI (magnetic resonance imaging), which is a medical imaging technique that uses a magnetic field and computer-generated radio waves to create images of the body and in this case the brain. The MRI she had ruled out tumors, but did not pick up very subtle inflammation deep within the brain.
Finally, I took a video of one of the seizures and the neurologist took no time to diagnose Complex Partial Seizures. She was prescribed anti-seizure medication that was not successful to control her symptoms. All of the medications made her seem like a zombie, even at the smallest dosage. This was because the seizures were caused by inflammation and not an electrical charge or a chemical imbalance in the brain. It took a few years to actually find a medication that works with her body.
Living with Epilepsy
Of all of the symptoms of PANDAS/PANS that have melted away since she started healing, the seizures have been the most stubborn and frustrating for my daughter to deal with and eradicate. There was a time where she could not be around flash photography or strobe lights. Even the flashing lights on the back of bikes could be triggering as well as stress and anxiety.
There was a time during which she would wake up in the morning and she would look at me and I would know she must stay home because we knew if she went to school a seizure was going to happen. I was her seizure detector in human form instead of a seizure dog. Her administrator in high school had my phone number on speed dial, when she was frequently having seizures. I could no sooner drop her off from school and would have to turn around again. This administrator was a life saver for my daughter and me too. We all created an incredible bond and we saw the healing occur and frequency of seizures diminish right in front of our eyes.
Limitations of Epilepsy
As I mentioned, anyone can have a seizure. There has been a direct relationship to my daughter regaining her health and seizure susceptibility. By working with our neurologist and our homeopath to remove the obstacles from healing, avoiding triggers, eating well, following a strict diet of non-inflammatory foods, staying hydrated and taking her seizure medication, her seizures have become less and less frequent. Even since we have had her seizures under control, we have continued to follow a strict protocol in order to minimize the risk of a seizure. My daughter’s protocol is: restful sleep, very strict diet consisting of gluten free, dairy free, low sugar and organic healthy foods, a regimen of medications and supplements taken daily, limiting overstimulating sensory situations, keeping stress managed, and most importantly listening to her body. These limitations can be very frustrating for a young adult/college student as sometimes she can’t do what her peers are doing . Epilepsy is an invisible illness which means she looks fine from the outside but not always from the inside, and it’s challenging for people to understand and empathize.
Mom’s Fear
My biggest fear having our daughter with epilepsy attending college 2500 miles away from home was the thought of her having a seizure when she’s completely alone. In fact, when her last seizure occurred a year ago, she was completely alone in her dorm room. When her seizure finished, she immediately called me not really being able to communicate properly,because having a seizure is like having an earthquake in your brain and it takes time to recover from it.
Even though my fear came true, but I realized that she was going to be alright. A few weeks ago she had a near miss of a seizure, she wasn’t alone but as a precaution the school sent her to the hospital. She called me when she got back to her dorm and I had a strange sense of calm because she handled it all. She dealt with the hospital, with her school, her friends, she handled it all because having epilepsy PANDAS/PANS has had a positive impact, just as much as a negative. Having to deal with this illness and learning to advocate for herself and listen to her body has helped her develop into an incredibly strong and resilient young woman.
Wise Words from a Teenager
I will never forget her words of wisdom a few years ago after having a seizure. I was trying to be detective about why it occurred, she said “Mom, we don’t have to figure out the reason always, sometimes the seizures are just gonna happen and we just have to accept that.” That was the moment I stopped worrying about every little component of this illness and used her words to heal myself and gives us both peace.
Seizure First Aid – https://www.cdc.gov/epilepsy/about/first-aid.htm
Epilepsy Basics – https://www.epilepsy.com/learn/about-epilepsy-basics
*The term seizures and epilepsy are used interchangeably
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