Juvenile Epilepsy Awareness

Gettin There- With Fingers Crossed

Good morning. As many of you know… JEA is an acronym for Juvenile Epilepsy Awareness. Our mission has evolved as our journey has evolved. It mirrors the ebb and flow of what an Epilepsy diagnosis brings to the entire family. Ups, downs, unpredictablility, advocacy, perseverance, channeling shitty bumps in the road into positive outlets and finding your purpose. Changing courses on a dime when needed and reestablishing your “new normal” many MANY TIMES OVER!  Even if you never knew your purpose until you had no choice. I am speaking from a mom perspective today. Bella is approaching 20 months seizure freedom.  I can’t explain in words the rollercoaster we have been on for 7 years.. but We can celebrate and choose to share hope for others.(not to sound cheesy)  The 2 pictures below have so much meaning behind them to me. You see. The little things you took for granted before, become the big things. Every swim, bath, car ride, every independent move she made brought extreme anxiety to a mom of a child with an unpredictable illness.  But you keep going and you never give up…. And you support THEIR INDEPENDENCE in every way “safely.”   You may have to change courses or look at life differently but I now know it was always leading to something greater..   a TRUE AUTHENTIC grounded PATH.  We all have a way we think our lives will go. That’s not always the case when you are given a situation that you MUST ACCEPT AND NAVIGATE. Well that in itself is the biggest life skill there is.  Acceptance and navigation.      I wasn’t sure I would ever be able to write a post about reducing medications but here we go… I hope it can help others or if you know anyone in the mix of a medication trial please let them know we are here to lend advice or help in any way.  We are not medical professionals but do have an amazing care community to direct you to.   

    Medication Reduction-

    Bella has always accepted her Epilepsy Diagnosis and persevered. She never wanted pity in any way and literally didn’t miss a beat when accepting it….  It was the medications that really had an impact on her.   You see, medications to treat Epilepsy are the real puzzle. No 2 people are alike and it’s literally a time consuming game to figure out what works.  Try one, adjust dosing until it’s maxed out…. And if it doesn’t work then you go back to square one… start over…. Repeat…  Each individual medication trial can take up to 9+months to navigate.   Tracking vital signs and reactions.  Weighing side effects with also stopping seizures.  Life saving vs. quality of life.   I can confidently say that this IS THE HARDEST PART OF finding a treatment plan.    The word PATIENCE has a whole new meaning to an Epilepsy family.   Bella’s medication side effects took a major toll on her personality, her relationships with friends, family, etc.  they drain you and also change your mood, energy level, and brain chemical make up and processing speed.  When you have a medication that is slowing the brain electrical functions to prevent seizures…. You are also slowing normal functions down.  It’s a delicate dance to still advocate for a balance.    Bella is blessed with no cognitive disabilities from her brain birth mark… intact she has high functioning intellect in some area, but the medication side effects really took a toll on so many areas of “life.”    The main questions we get from our followers are….What medications have you tried? (12 different ones) How long did you try it?  Did you see mood changes? What toll does it take in overall health? Ex. Liver functions, heart rate, etc.  NOW HERE WE ARE TODAY LOOKING AT A POSSIBLE REDUCTION.
    Bella has an implanted RNS device.  Essentially a brain pacemaker.  She was one of 1400 people to qualify in the USA.  It’s amazing and you can find a previous blog post to explain it thoroughly.  It also acts as a 24 hour EEG and we can track her brain activity every second of the day.  Her neuro team can make adjustments every 3 months to perfect its impact.   We hope in time she will only need this as treatment but only time will tell us that.   Now onto the purpose of this post.  She is on 3 heavy duty medications that are working… (and her mood, personality, and functions are AMAZING).  They have not always been.  Some of the medications in the beginning caused extreme side effects. (Medically- rash, heart rate increases and decreases, etc….  And MOOD/personality- loss of affect, horrible dreams, change in personality) but in combination with her RNS Device they have been working for 20 months.   Her neuro team has recommended that we try and reduce medications.  VERY SLOWLY.  her current meds are onfi, Vimpat, and xcopri.   She has not had a seizure since incorporating xcopri.   So we are hopeful that we can reduce to get her on this mediation ONLY in time.    We will slowly reduce onfi…and then Vimpat.  We are all so nervous but hopeful.  With all that being said. She is the strongest and most hopeful she has ever been….   Honor student in college, planning wonderful next steps for her career path, and appreciating every second of each day.    I watch her as she helps others with wisdom beyond her years.  “Life” Insight far greater than most almost 21 year olds.   Sometimes life’s BS can mold you into being unshakably grounded and solid in who you are and what you want out of life.   The 2 pictures attached may seem like nothing special to most.. nice family vacation pictures.   But to this mama….  It’s everything:.. a sense of less worry and anxiety as your child jet skis and swims in the ocean…. 2 things that brought extreme anxiety to me before.  WE WANT HER TO BE INDEPENDENT AND GET EVER OUNCE OF AMAZING OUT OF LIFE. She had to give up a lot during her teen years while navigating.  But it’s all good to see the person she is becoming/.     Impactful moments as I took those pictures.  Simple yet REAL.    I have no doubt Bella will do big things on her terms, with the most real and grounded foundation and people surrounded her every step.     Fingers crossed for medication reduction success!!!!!!    Hit us up if you or anyone you know needs a support community.  Much love to all of you!!!     Finger crossed, love Court 


    Leave a comment