Tag Archive for epilepsy

We’ve had a Hiccup, It’s Time for a Reset

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Epilepsy has been consuming us for the past few months.  Or should I say momentarily consuming us.  Our daughter Hilary had a grand mal seizure at our home the day after Thanksgiving. This was her 4th seizure in the past twelve months, and only the second time she’s had an injury that required stitches/staples. Oh my!  She injured the top of her head when she fell, and probably hit it on a small step.  Hilary has had a history with epilepsy since she was 4 years old.  You can read about her journey here.

When your kids have chronic conditions that require medication management, and doctor visits for maintenance of those meds, you expect to have a few bumps in the road on occasion.  However,  with Hilary, her bumps in the road have caught us off guard and thrown a wrench in the matrix of our world that was completely unexpected.

Before February of 2013 Hilary had gone 10, count them 10 years seizure free.  That means her meds were working, doing their job, and keeping her seizures at bay.  The seizure the day after Thanksgiving put Hilary on a 4-6 month no-driving restriction. That one fact alone has turned her world upside down and inside out.  The no-driving restriction has taken a big bite from her independence.  And to Hilary’s credit she has handled that fact like a trooper. Staying positive, taking the help where she needs to, and just getting through one day at a time.

The other hiccup Hilary had shortly after her seizure was the medications that were being added to her regimen started to give her problems.  One med made her get the uncontrollable chills, and then the next one a terrible allergic reaction.  Hilary got a fever and then broke out in hives within 12 hours.  This prompted a second visit to the ER in less than two weeks.  Not the way Hilly had been planning to start her holiday season. The allergic reaction was quickly brought under control, and she was able to come back home.

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As of this writing Hilary is coming up on four months seizure free.  Can you see me doing my best cheer-leading impression?  She is hoping to get back to driving soon, and then she will not have to have her parentals carting her everywhere.  We have had a lot of bonding time recently.

There are so many things we are thankful for through this hiccup of life-

> Hilary was getting ready for work the morning of her seizure. Thankfully she hadn’t gone out the door yet.

> Her employer is gracious and flexible with her job assignment and duties.

> The care and compassion from family and friends helping Hilary deal with her seizure, and the changes to her meds.

>The never-ending love and selfless-ness of her family and friends surrounding her and getting her where she needs to be everyday.

> The love of her very special grandparents and great-grandparents.  She’s a lucky girl to be blessed with their presence in her life.

It is times like these when life gives you a friendly reminder to never take things for granted. Be thankful for each and every moment that is good, that brings you happiness, and allows you to tell your loved ones how important they are in your world.

Hilary’s journey with epilepsy is ongoing, and not always smooth sailing.  But, if our story touches one person or family dealing with epilepsy and lets them know that they are not alone, then our story is 100% worth sharing.

Photo credits: T.Spindle

A Humbling Reminder

My sweet baby girl with her niece.
My sweet baby girl with her niece.

Almost a month ago now,  The Party House had an emergency.  Not the worst emergency ever, but an emergency none the less.  Our daughter, Hilary, is epileptic, and she had a seizure right here at home.  She had been running a few miles on the treadmill in our game room, and Travel Man and I heard this loud clunk, and bang, and we knew something was wrong.  We bolted to the game room simultaneously and found Hilary on the floor in a full on tonic-clonic (grand mal) seizure.    Travel Man quickly got her away from the end of the treadmill, I ran to grab the phone to call 9-1-1, and got the treadmill powered off.  Her convulsions probably lasted for 1-2 minutes, but it seemed like forever and a day before they stopped.  At this moment in time a wave of emotions washed over me like a ton of bricks.  The memories of all of the medical procedures and emergencies that we have been through with the kids over the years played like a short, quick movie in my mind.  And I’m thinking, this can’t be happening again. I wrote a few posts about our family’s life story last year, and about how I stopped sweating the small things in life.

This is the first time Hilary had a seizure where she got injured.  She was bleeding a little and we had to locate the source, which was actually her lip. (Required 3 stitches at the ER). We did call 9-1-1 for the paramedics to help us out with getting her vital signs checked out, and transporting her to the Emergency Room.  And I have to tell you all that the 9-1-1 operator who was talking to me was a saint.  She calmly and patiently talked me through what we needed to be checking on Hilary.  The biggest concern was with her breathing and making sure she did not vomit.  This was Hilary’s first seizure in almost 8 years.  It had been such a long time since her last seizure we did not want to take any chances with her having another one on the way to the hospital.

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My sweet baby girl with her boo-boo lip.

Now fast forward to our hospital visit.  My daughter is sitting in the ER bed, her lip swollen and stitched up and all I am thinking is I am ever so thankful she was not in her car when this all happened.  I am  so thankful I am sitting here talking to her, and her only injury is a fat lip,  I can deal with that.  Of course your mind wanders to the “What If’s”, and “What Could Have Happened’s”.  But mine and Travel Man’s thoughts were resting on the fact that Hilary was going to be ok, and we were taking her back home.

All of Hilary’s seizures (I believe she has had 4) have occurred at home.  Ironic isn’t it?  We have been right there to take care of her, and get her through all of them, except one.  The first seizure she had we think happened while she was in the bathroom, and we had no idea anything had happened to her.  She did not take any big falls, and did not remember anything afterward.  She thought she had passed out from being dehydrated or having the flu or something.  The other three seizures were all very sudden, with big falls,  and with no warning whatsoever.  That’s the scariest part of Hilary’s seizures.  She has never had any physical warning that they are about to happen.

So, Hilary has had a very humbling reminder that her meds are ever so important to her well-being.  After this seizure we promptly got her a new med reminder box, and she is diligently back on her med routine.  She realizes now more than ever that the daily meds she takes will not go away anytime soon, and that she will need to take them from here to eternity.

Hilary and I chatted about me writing this post.  She is quite protective of her emotions and feelings, and I would never share this story with all of you without her permission.  Hilary had this to say about her seizure, “I was too forgetful about my meds.  It had been so long since my last seizure that I did not really think about the possibilities.  My epilepsy had been on the back burner.  So, if I forgot my meds I would just shrug it off and take them the next time.  This time, with this seizure was just one too many times.  This was a wake up call that this is for life.”

When I Stopped Sweating the Small Stuff – Finale

2001 was unequivocally the most emotional and challenging year for my family.  I turned 40 in April of that year, and looking back it was such a tumultuous year.  By December of that year we were preparing for the holidays,  trying to get through the emotion of the year so far, and then our life path  was thrown on a whole new curve- Again!

Hilary at 3 yrs. old

  My daughter Hilary, was 14 in 2001.  Hilary was in high school, I was working full-time, Bryan was in 7th grade, and Naomi was staying at home with Zach during the day.  On this typical weekday we were all getting ready for school and work at the same time to get out the door by 7am.  Hilary was in my bedroom heading into the shower, brushing out her hair, and them bam!  She fell to the floor and was having a full-blown grand mal, epileptic seizure.  I was able to get her on her side, and screamed for Naomi to dial 911.  I was panicked.  It seemed like Hil’s seizure lasted for 10 minutes, everything just seemed to be going in slow motion, and I thought the seizure would never end.  I remember being so worried that she would choke before the paramedics could get there.

During this whole scene Bryan is in his bedroom with Zach keeping him calm, and Naomi is on the phone with 911 while we wait for the paramedics to arrive.  Finally the firemen and paramedics arrive, and wheel the huge gurney down our hallway to get Hilary into the ambulance.  By the time she left the house in the ambulance for the hospital Hilary was awake, but not very alert.  And to this day she does not remember much about that morning, except bits and pieces of the ambulance ride to the hospital.  One other note here, Hilary had a few episodes of not feeling good, and not remembering things prior to this first seizure that we witnessed.  We’re fairly certain she had at least one other seizure while getting ready to go out somewhere and no one heard her fall in the bathroom.

Now for a little history on Hilary’s medical condition.  When Hilary was four years old she was diagnosed with petit mal epilepsy.  This type of epilepsy causes a person to loss complete awareness of their surroundings, kind of like a black out without passing out and falling to the ground.  We used to call them “fade outs”.   Hilary was medicated with depakote, and this took care of the “fade outs”.  At age nine she was backed off of the medication at my request and under the direction of her doctor, and we did not observe any additional “fade outs”.  One of my most vivid memories of this time was taking Hilary to the neurologists office for an EEG when she was four years old.  She had the curliest hair in the west, and when they put the sticky stuff in her hair to attach the electrodes I thought, “Oh no how will we ever get that mop of curls clean?”  Also, I was 8.75 months pregnant at the time with Zach.

So why would Hilary have a grand mal seizure at age 14?  The doctors could not answer that question, except to say that her brain activity is in overdrive 24/7.  Hilary was in the ER for a good part of the morning, and she was released to go home and rest.  They put her on depakote right away, and the levels of the medication in her system would be monitored every three months or so.  I was so devastated, upset, and emotional I couldn’t see straight.  I never, ever expected Hilary’s epilepsy to return.  Another one of my kids with a chronic condition, and she will now be on medication forever.

How could all of this be happening to one family?  Why?

My family and friends were so very supportive during this time.  They helped to give me the strength to make it from one day to the next.  I remember many phone conversations with my sister just telling me to breathe.  Quite frankly I just wanted this year to end, and get on to 2002.  I was definitely looking forward to the New Year.

Hilary had great success with the depakote and only suffered one other seizure,in July of 2003.  The second seizure did not require a hospital visit.  We knew what to do to help Hilary, and thankfully we were all at home with her when this one happened.  Knowing what we know now, Hilary believes this second seizure was triggered by the amount of intense physical activity from her volleyball training program.  She can tell now when she needs to back off a little bit when she is working out.

Hilary’s main challenges with her epilepsy have been; getting her license (she had to have the doctors ok), and trying to remain “normal” even though her livelihood now depends on a daily medication.  She has had her fair share of ups and downs emotionally staying on her meds, and going to the doctor as directed.  It has taken a long time for her and Zach to commiserate with each other on what they go through on a daily basis to stay active and healthy.  I think they didn’t want to burden each other.  But as they are now both in their 20’s they are starting to realize they have their own little support network at home.

Zach’s 20th Birthday!

Finally 2001 was coming to a close.   I know for myself at the time I just needed to keep looking forward, that’s how I stayed positive.  Of course there was some reflection on what we had gone through.   But by the end of December we were all doing ok.  Zach was getting the medical attention he needed.  Hilary was on her meds, and doing fine.   Emotionally we were all still suffering, but we just took one day at a time, and I had to be the cheerleader for the kids.  They needed positives everyday, otherwise how would they learn to survive.  That is probably the single, biggest lesson that the kids learned.

Zach & Hilly-Time to Party!

In life there are always, always obstacles thrown in your path.  How you choose to deal with those obstacles is what ultimately determines your survival.  You can choose the “poor me” route, or you can choose the “what’s the one thing I can do today” route, and forge ahead each and every day.  I, as you can probably tell, chose the latter.  I have always been a positive, upbeat person.  I would rather focus on the road that lies ahead of me, and not be looking back over my shoulder for the “what ifs”.  I’m so pleased to have finally shared the story of our 2001 Life Curves.  It is my hope and dream that our story will help other families push through any obstacles thrown in their path, and just forge on through for survival.

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