What is it like to live with epilepsy? – Interview with Kathryn

 

Hi Kathryn! Please tell us a little about yourself and your medical journey thus far.

Hi! My name is Kathryn, I’m from Medfield, MA and I’m currently a senior at Boston College studying biology and medical humanities on the pre-medical track.

A few things about myself: I absolutely LOVE dogs (I have 3!), I’m a huge Pats fan, and I’ve been a competitive soccer player for as long as I can remember. I was originally trying to play on a varsity team in college, but due to previous injuries, plans changed and I now play on a competitive club team at BC.

Although I’ve loved my time playing on the BC team, it was during a game in the national semi-finals that my medical journey started. In the last half, I suffered a severe concussion. I was elbowed in the back of the head and then fell to the ground and hit my head on the grass. Standard concussion symptoms ensued, but a week or so into the concussion, I started experiencing seizures. I was brought into numerous hospitals in Boston. I met with about 30+ neurologists, had many EEGs, and still doctors were unable to figure things out.

One night, things took a turn and I went into status epilepticus. I was rushed into the emergency room only again to be met by another doctor who didn’t know what to do. It was at this point my family and I decided to seek care in New York and get answers. After meeting with a neurologist, neurosurgeon, neuropsychiatrist, and chiropractor, I was diagnosed with epilepsy and cerebral tonsillar ectopia (a condition where the C1-6 vertebrae are inverted, cutting off blood and CSF flow to the brain and trapping toxins).

What do you experience and/or feel before a seizure occurs?

Typically, I have a few auras before a seizure. To name a few, I’ve felt: numbness, tingling (typically on the left side of my body), weird smells, sudden wave-like headaches, and an occasional rise of uneasiness. All of these don’t usually occur at the same time, but I have had combinations of them before.

What do you experience and/or feel during a seizure?

For me personally, I don’t feel anything during a seizure. When I wake up after having one, I don’t remember much of what happened. I’m typically very confused as to what happened.

How often do your seizures occur and how long do your seizures typically last?

Currently, my seizures occur 4-5x per day for about 20 minutes. Due to their duration and frequency, most of my seizures are rescued in order for me to attend my classes.

What do you experience and/or feel once the seizure is over?

Whenever someone says “you know, I feel like I’ve been hit by a bus,” I understand what they mean now, especially after a seizure. When I wake up from one, my entire body usually aches, my mind is foggy, and I generally have a decent headache. It’s hard for me to think and process information for a period of time post-seizure, but improves as the day goes on.

What’s hardest for me is as the day goes on and the more seizures I have, it gets even harder to process information. You feel more exhausted and more so as though you’ve run about three marathons in one day.

What does it feel like to receive rescue medication?

Receiving rescue medication was rough for me at first. I have the nasal Midazolam medication and to be honest, when my parents first used it, I cried. It burned! Totally did not expect it. I’ve gotten used it now, but I definitely had an adjustment period.

How do you feel after you have received a dose of rescue medication?

After it’s administered, I feel very flustered and my nose burns for a bit, but it eventually subsides. I do wake up after receiving the medication with the same feeling I have after waking up from an un-rescued seizure. There are seizures as well that have felt worse than others-  I’ve woken up and had major headaches, been very drained/exhausted, and in general in a lot of pain.

How many seizure medications do you take daily and how often?

Currently, I’m on two seizure medications that I take six times a day. I have many reminders in my phone to keep track :).

How does taking seizure medication every day affect you? Do you experience any side effects? If so, what are they?

At first, I had adverse effects to my seizure medications. I felt extremely dizzy to the point where the entire room would spin and I couldn’t focus on anything. I would have to sit down for about a half hour and just wait for it to pass. Nausea and vomiting were also frequent side effects in the beginning as well. These effects subsided as I started taking the meds more and more. Thankfully, I no longer experience any side effects.

What does it feel like to have an EEG?

To be honest, having an EEG is not my favorite thing in the world– I cannot get past the whole glued-electrodes-in-my-hair concept (still can’t). I feel like I’m strapped to the bed most of the time and that moving around is tough, especially sleeping. The electrodes and cap after a while do get a bit itchy, but feel better after they change the wrapping!

Do you feel stigma around having seizures?

Socially, I don’t feel stigmatized for having seizures. My friends, family, and boyfriend are extremely supportive and helpful throughout the entire process and I’m extremely grateful for all of them. From the beginning, they have always been accepting and encourage others do the same.

I have, though, had issues with a few professors in terms of stigma and seizures. I’ve been approached by a few recommending I drop out as they felt it would be an easier way to handle the condition. They believed the stress of it all would be too much to handle with school. Although disheartening to hear it from a teacher, I’ve learned one of the best ways to navigate this is by facilitating open conversation. Throughout these past semesters, I’ve met with each of my professors and have had honest conversations about my condition. From there, we were able to work out plans to complete the same course work but in a different way.

Stigma (from my experience) develops when one side does not understand/have ample information about the other. By initiating dialogue, it begins to close this gap, hopefully helping each side understand the other a bit more.

What are some of your hopes and dreams for the future?

In the future, I one day hope to become a doctor that works in pediatrics. Doctors meet patients at some of their most vulnerable moments- both good and bad. With kids, this is especially impactful as these moments are something that shape life moving forward. When kids go through these moments, just as I have before, I want to provide as much support and care as I can.

As a pre-med student, what are some hopes you have for the field of epilepsy research?

Some hopes I have for epilepsy research would include more detailed studies on post-traumatic epilepsy and additional causes to seizures. One thing I’ve found in my experience is that we’ve had to think very creatively until we found a solution that worked, as many neurologists haven’t seen epilepsy develop from my situation. I hope that as more research is conducted, scientists learn more about how damage caused by a TBI (or another injury) triggers or contributes to the onset of an epileptic seizure.

As an unexpected member of the epilepsy community, what has been your experience in your “new” everyday life?

Adjusting to my “new” everyday life was a difficult transition at first. It was hard managing a schedule around seizures and constantly being under supervision of others. It took time for me as well to get accustomed to being unable to do certain activities like run, play soccer, ski- all activities I thoroughly enjoy doing. I hope that when the seizures get under control I’m available to return to some of these events. As I’m getting into a routine, I’m definitely more adjusted and things are easier to manage. I’m able to find different ways to stay active, get out, and see friends.  Similar to my academics, I had to find different ways of going about normal activities.

What would you like people who haven’t experienced epilepsy to know?

Managing epilepsy is a full time job and certainly not an easy task. It takes a village and I’m beyond thankful for all the help and support of my family and friends. They have been and continue to be truly remarkable throughout this entire process.

Shopping for Kids of All Abilities

By: Kim Nye – Mom to four great kids, ages 6 to 15.

The holidays are here!  It can feel difficult to shop for a child with developmental delays.  My friends and family are always asking for gift ideas, especially for Tessa (15) and Colton (6) who have SLC13A5 Deficiency.  To make it a little easier for your friends and families, I thought I would share some links to toys and products that work well for our family.

I am always tempted to buy educational toys to help Tessa and Colton “catch up,” but I try to remember that they are kids first and developmentally delayed second.  The goal should be to have fun!  If you have favorite toys that are not listed here, I would love for you to share them in the comments or in the replies!


1. American Girl Dolls and Accessories

American Girl Dolls are expensive, no question, but I love that the company makes everything for their dolls, from braces to wheelchairs to diabetes kits to service dogs.  Kids can have a doll that is just like them.  Tessa has had a Bitty Baby American Girl Doll, named Alison, since she was a little baby herself.  She loved to dress her, feed her, and put her to bed.  Added bonus: When Tessa has an EEG or a blood test, we bring Alison along so that she can get an EEG or blood test as well.  Sometimes, we just need a buddy to go through it with us.

Tessa and Alison, getting EEGs together.


2. Pipsticks Sticker Club

Our family is sticker obsessed, so it’s great when Pipsticks sends cute stickers straight to our house each month.  My middle-schooler decorates her school notebooks with stickers, Colton likes stickers as rewards, and Tessa sticks them indiscriminately on everything (😂). When I’m really knocking it out of the park (which is rare), I decorate little notes with stickers, and then slip the notes into my kids’ lunchboxes.


3. Custom Name Stamp

Colton cannot write his name yet, so he likes to use a self-inking “Colton” name stamp.  He is so proud when he sees his name on paper!


4. Highlights Magazine

Kids love to receive mail!  Highlights makes magazines for different ages and levels of understanding.  Tessa likes Highlights’ High Five magazine.  She also likes People Magazine, but I feel like more of a responsible parent by suggesting Highlights (hah!).


5. Play-Doh, Putty, Slime, and More

Sensory toys are a big hit with my kids. (Warning: sensory toys are often messy toys!)  Homemade slime was all the rage about a year ago, so you should be able to enlist your local elementary or middle school kids to help create this present.  For Play-Doh, I would recommend checking out their fun kits.

When it comes to Putty, you can buy therapy putty or Aaron’s Thinking putty. My kids prefer Aaron’s because it comes in all sorts of colors (including glow in the dark).

Kinetic sand is so fun to touch and squish! Even I find myself playing with it when the kids bring it out.


6. Kiwi Co Crates

Kiwi Co Crates are another subscription that arrives in the mail.  Kiwi Co makes different craft kits for different interests and ability levels.  Colton really enjoys the Panda Crate and the Koala Crate. In the picture below, Colton’s sisters helped him make a dino visor from the Koala Crate.


7. Magna Tiles

Magna Tiles are blocks that stick together with the help of magnets.  There were a few years when my girls were all obsessed with Magna Tiles.  I used to find Magna Tile houses and towers in their rooms all the time.


8. Stomp Rockets

Stomp Rockets are fun for kids of all ages.  Even when Colton was too young to stomp, he loved watching the rockets fly through the air.


9. Full Support Swing

Colton had trouble keeping his head up in a bucket swing, so we bought him one with a high back and plenty of support. With this, he could feel the joy of swinging without having to work so hard.

 


10. Mozart Magic Cube

This musical cube was one of Colton’s favorite toys when he was learning to sit upright.


11. Boogie Board Writing Tablet

Tessa loves to color.  The Boogie Board is a good option for when you don’t want the mess.  It comes with a stylus, and the entire board erases with the single push of a button.


12. Books

My girls are avid bookworms; Colton, not so much.  However, books that have real pictures and story-lines about real life topics are the easiest for him to grasp.  We like this series about Lola the Dog:

Colton also likes books by Mo Willems because his sister Maggie reads them to him, and she does all the voices 🙂


Happy Shopping!

-❤️ Kim

P.S.  This is not a sponsored post, just a list of some of our family’s favorites.

P.P.S.  If you are ordering through Amazon, we encourage you to go to smile.amazon.com and choose TESS Research Foundation as your charity. Amazon will donate 0.5% of every purchase to TESS, at no additional cost to you.

Three Fun Crafts For Everyone

By: Lily N.

Hi my name is Lily, and I am 12 years old. Two of my siblings have SLC13A5 Deficiency, which means they have seizures and a harder time learning.

Since my siblings all have different ability levels, we can have a hard time finding crafts to do that we all enjoy. Luckily, there are crafts that I’ve learned that we can all have fun doing together.

Just a friendly safety reminder – when handling scissors and hot glue make sure to be cautious. They can hurt you if you use them incorrectly, so have an adult help you when handling them.

Now, here are my three fun crafts:

1. Tape Painting:

While we all love to paint, we all enjoy different styles and variations of painting. This is because of our different ages and abilities.

Maggie and I love to do real acrylic painting, while Colton loves finger painting and Tessa loves watercolors. Here is a fun, new style of painting that we all loved!

Materials:

  • Washi Tape or Duct Tape
  • Canvas – any size
  • Paint
  • Paintbrush
  • Water Glass

Instructions:

Put washi tape or duct tape on a canvas in the desired shape. Colton put the tape in the shape of his name, and Maggie did flowers. They both turned out really cool. Then, you use any type of paint (we used watercolors) to paint the WHOLE canvas. In order for the shape to show up properly, you need to cover all the edges of the tape with the paint. Colton had so much fun, and unlike with some of the crafts that he does with me, he never got bored. His favorite part was dipping the paintbrush in the water, then on the paint, then on the canvas.

2. Bubble Canvas:

Maggie and I did this craft and we had a lot of fun! Tessa and Colton didn’t do the craft, but they sure loved playing with the bubbles!

Materials:

  • Bubbles (if you don’t have regular bubbles, you can make bubbles out of dish soap, but you have to be careful because dish soap can kill plants and grass)
  • Food dye
  • Straws
  • A canvas
  • Acrylic paint (the acrylic paint should be the same color as the food dye… or at least a similar color)

Instructions:

Take the dish soap and separate it into different bowls. The number of bowls you use depends on how many different colors you want. We wanted two colors so we separated the bubbles into two different bowls. Add the food dye and acrylic paint into the bowls (you can always add more, so only add a little at first). Then stir until the liquid is even. Dip your straw into the liquid and blow through the straw directly above the canvas. It was hard at first, but we got the hang of it.

The thing I love about this project is that it is mostly bubble liquid (which is mainly soap) so if we messed up, we could just use a baby wipe to rub off the bubbles and try again. This is a messy craft, so I would do it outside.

3. Rainbow Plates:

Tessa and I did this one morning while Maggie was at a friend’s house, and we had so much fun! This craft is great for two people because you can each use half of a plate, and then you’re not wasting the other half.

Materials:

  • One white paper plate
  • Cotton balls
  • Markers and crayons and dot art stampers
  • Hot glue gun
  • Hot glue stick(s)

Instructions:

Cut the white paper plate in half and then cut a semicircle out of the straight side. Your finished cut-out should look like an arch/rainbow. Then start coloring in the colors of the rainbow. Higher ability level kids can put the colors in order in straight, pretty lines or, like Tessa, you can scribble wherever you want. Once you finish coloring your rainbow, use hot glue to add the cotton balls on the ends of the arch. Then, your masterpiece is done! You can hang it up on the wall, use as room decor, or even give it to someone as a present! I loved making this craft with Tessa, and I can’t wait to do it with Maggie and Colton!

There you have it! Three easy crafts that I love doing with all my siblings. Thank you for reading this blog post! I had a lot of fun making it!

❤️ Lily

Introducing the TESS Research Foundation Blog! 

We are excited to bring you more voices from our TESS Community. Here we will feature blog posts from SLC13A5 Deficiency Family Members, Doctors, Researchers, Volunteers, and members of our Board of Directors. We hope this will help raise awareness about what it is like to live with SLC13A5 Deficiency and highlight the milestones on our path to a cure. Thank you for all that you continue to do to help our TESS community.