November is epilepsy awareness month! Epilepsy is a disease that has stolen so much from my family, and from so many families that I know. It’s a disease I’ve seen take the lives of children. A disease that has stolen skills, development, growth, and joy. A disease in which research is underfunded and yet it affects 65 million people worldwide. Please take the time this month to learn more and help us spread awareness!
Madison developed epilepsy as a result of meningitis at 11 days old. She had her first seizures subclinically while she was sick, meaning there was no physical presentation of the seizure, but it was picked up on an EEG. She was started on three different medications in order to stop the seizures, and went home from the hospital on one as a preventative measure, although we knew it was likely she would develop epilepsy as a result of her brain injury.
In December 2017, at 4 months old, she was diagnosed with a very severe and crippling form of epilepsy called Infantile Spasms or West Syndrome. IS is characterized by epileptic spasms, developmental problems, and a specific and chaotic brain wave pattern called hypsarrhythmia. The spasms tend to occur when awakening and often in multiple clusters, sometimes hundreds of times a day. Infantile spasms are often misdiagnosed as it can look like a child’s startle reflex, however a quick diagnosis and rapid early treatment is KEY. Even though Madison was diagnosed extremely quickly, and even though we have tried the frontline treatment plans for IS, three years later she is still suffering from seizures EVERY SINGLE DAY. This is the reality for so many people suffering from not only infantile spasms, but epilepsy in general. In fact, 30% of people suffering live with uncontrolled epilepsy and struggle day to day with the threat of imminent seizures. And the more medications one fails, the more likely it is that they will never find one that works. It’s an extremely hard balance trying to figure out what combination of AEDs (anti-epileptic drugs) work best at keeping things most under control, while also not sedating the patient & inhibiting their quality of life. In addition to IS, Madison has also experienced myoclonic jerks, tonic and focal seizures.
Facts & Stats
*provided by the Epilepsy Foundation
- 3.4 million people in the United States are affected by epilepsy
- 65 million worldwide live with epilepsy
- 1 in 26 people will be diagnosed in their lifetime
- 1 in 10 people will have a seizure in their lifetime
- 6 out of 10 people do not know the cause of their epilepsy
- 470,000 children have epilepsy
- 1/3 of people live with uncontrollable seizures because no treatment works for them
- You CAN die from epilepsy, although it doesn’t happen frequently. SUDEP or sudden unexpected death in epilepsy, kills 1 out of every 1,000 people with epilepsy a year.
- You CANNOT swallow your tongue during a seizure.
Types of Seizures
While most people visualize someone convulsing on the ground when they hear the word seizure, seizures actually present in many different ways. Something as simple as a brief staring spell or small head drop can be a seizure. If you ever think your child is acting off or may have experienced a seizure, always seek medical attention. If you think your child is suffering from infantile spasms specifically, DEMAND an EEG. Do not leave the hospital without one. Learn more about some of the key seizure types below to be better informed about what different seizures may look like.
Generalized onset seizures: affect both sides of the brain
- Absence seizures: staring spells or brief twitches (myoclonus) that can affect a specific part of the body or the eyelids
- Tonic clonic or grand mal: jerking movements, muscles becoming either tense & rigid or limp, muscle twitching, or spasms
Focal onset seizures: located in one area of the brain
- Focal onset aware: affect a small part of the brain & can cause twitching or a change in sensation like taste or smell. The person is awake and aware during the seizure
- Focal onset impaired awareness: usually cause confusion. A person may be out of it and unable to answer questions or take direction for a few minutes
- Unknown onset seizures: begin in an unknown part of the brain and may spread to both sides. Usually described as tonic-clonics or spasms
Some words often used to describe seizures are:
- Tonic: muscles become stiff
- Atonic: muscles become relaxed
- Myoclonic: short jerking in parts of the body
- Clonic: periods of shaking or jerking
There are different ways to treat epilepsy, but even with multiple routes to try, there is NO cure. And because there is no cure, many people, like Madison, live with uncontrolled epilepsy every day. Anti-epileptic drugs are often the most common and easily accessible form of treatment, but come with many side effects. It can also take months or years to determine the best “cocktail” of medications to stop one’s seizures. The most common side effects are extreme drowsiness, nausea, irritability, and clumsiness. But we’ve personally seen these meds also cause weight gain, lack of appetite, poor ability to learn, vision and mood changes, and more. For example, Madison is currently on a new medication that can affect her liver and kidney function. We’ve unfortunately seen certain medications greatly affect Madison’s quality of life and some medications can even cause more seizures.
While medicating is typically the first choice in treating epilepsy, some of these medications are astronomically priced, especially for those without good insurance. We pay $100 a month for one of Madison’s meds, but had we not gotten it covered by insurance it would set us back $1,000 a month. One of the frontline treatments she was on for her Infantile Spasms, a medication that didn’t even work for her, cost about $30,000 for ONE vial. And no, that’s not a typo. $30k. For one vial of one medication. How are families without insurance supposed to pay for that? How can we put parents in a position where they are forced to determine whether their child can receive potentially life saving medication or not, because they simply can’t afford it. We have to worry about side effects, about seizures, about quality of life, and costs now too? It’s truly sad and very unfair.
In addition to medications, the Keto diet can be extremely helpful in eliminating or better controlling seizures. This diet is grueling and food portions need to be measured to the t! It can stunt growth, cause constipation, low blood sugar and more. But for many it has been a life saver. There are also surgical options. Madison’s brain damage is not limited to one area, so she’s not a great candidate, but depending on the reason for epilepsy and type of seizures suffered, sometimes surgery offers the best outcome. A VNS is a device implanted in the chest that sends bursts of electrical energy through the vagus nerve and to the brain. This device can help to inhibit seizures by 20-40%. Some patients even have parts of their brains removed in the hopes of controlling seizure activity. A decision that is obviously not taken lightly by a parent and very serious and invasive.
CBD has also become a super popular option in treatment. But just like all of the aforementioned options, CBD does not work for everyone. We’ve seen wonderful improvement in Madison’s cognitive skills since starting, but we haven’t seen it stop her seizures just yet. I think there is a lot of opportunity with CBD, but unfortunately there isn’t a ton of research on the subject. There are very few guidelines when it comes to dosing, and with so many strains and concentrations of THC to CBD, it leaves for a lot of trial and error for parents so desperately wanting to find the right CBD for their child. There is also a large stigma around CBD since it comes from the marijuana plant. Such a stigma, that there are many neurologists out there who are completely against trying it. There are parents that are forced to use CBD in secret, forced to move out of state, or continuously seek out a new doctor and one who is supportive of giving CBD a chance. We need more funding for research and more acceptance for all types of treatment methods. We need more AWARENESS, which is why I have started sharing Madison’s journey so openly.
Seizure First Aid
While not all seizures are an emergency, it’s important to know when one is! If the seizure lasts longer than 5 minutes or the person has never experienced a seizure before, call 911. Use the below as guidelines for first aid instructions and always remember STAY-SAFE-SIDE!
- STAY with the person and start timing the seizure! Check for a medical ID.
- Keep the person SAFE. Move them away from harmful objects.
- Turn the person onto their SIDE if they are not aware or awake. Don’t block their airway. Loosen tight clothes around the neck and put something soft and small under their head.
- Do not put anything in their mouth.
- Do not restrain. Do not hold them down or try to stop their movements.
- Stay with them until they are awake and alert.
It’s important to note that most seizures last for only a few minutes, but for someone like Madison who experiences clusters, they can often last longer than 5 minutes, and not be an emergency. We obviously know what is considered abnormal or an emergency when it comes to Madison, but if you’re not sure and find yourself with someone having a seizure longer than 5 minutes or for the first time it’s always best to call 911 to be safe. Epilepsy can affect anyone with a brain, and anyone with a brain can affect epilepsy! I have seen it destroy families and take their children. AEDs can leave patients in a total fog with little quality of life. Parents have to make the choice to remove parts of their child’s brain in the hopes that surgery will stop this awful disease, with no guarantee. Epilepsy is HARD. Epilepsy is SCARY. And epilepsy is COMMON. There are more than twice as many people living with epilepsy in the U.S. as the number of people with cerebral palsy, muscular dystrophy, multiple sclerosis, and cystic fibrosis combined.
I have been fortunate enough to connect with so many strong mamas thanks to the internet who have greatly helped me on this journey. And it is because we connect and share our child’s stories that other parents can sometimes get a quicker diagnosis or better treatment plan in place. There’s a good chance Madison may always suffer from seizures, but as her parents we are determined to provide her with the best quality of life we can. We hold onto the hope that perhaps we haven’t found the winning combo to stop her seizures just yet. Perhaps we still will. In the meantime please help our community to spread epilepsy awareness and please take the time to learn seizure first aid! Recently The Epilepsy Foundation launched the first & only Seizure Recognition & First Aid certification training. This program is FREE and will increase your knowledge, skills, & confidence in recognizing seizures and providing first aid to those in need. It’s being offered virtually throughout the month, so please visit here and consider getting certified!
Awareness brings knowledge, and knowledge brings CHANGE. Let’s never stop talking about epilepsy and please let’s never stop praying for all of those affected. If you’d like more information follow me on Instagram @iamkellybacks where I’ll be sharing about epilepsy all month long! Happy November everyone!