Month: May 2014

Ashleigh’s Story

Ashleigh’s Story

I was a healthy active person; during school I played touch and hockey and was good at running long distances. I had my first seizure when I was 16 and at that time didn’t realize how much it was going to affect my life. Living with a chronic illness has impacted  me in ways a healthy person can’t even comprehend.

1624513_10151833852101886_728237568_n

 

When the seizure first happened I was taken to hospital and  drugs were used to knock me out for a while. Then I woke up  feeling very confused. Doctors came and went and spoke in terms I didn’t really understand. At that point in life I was under a lot of stress with home life. The doctors thought I was suffering from psychological seizures and suggested that a bit of counseling would stop them from happening.

But this wasn’t the case, over the next few months, the seizures just kept getting worse and worse. I was put on different medicines to try to control them which eventually worked but I personally felt I was fighting the medical world to be heard. I was back to my old self and picked up my life where it had been put on hold for awhile. I continued to go to school and work and took up break dancing, I was happy.  For the next couple of years I was dancing nearly 4 times a week and life was looking pretty great. You wouldn’t even have been able to tell I had epilepsy! I didn’t even feel like I was sick except for the fact I was taking tablets each morning and night.

I was doing so well that the doctors decided to reduce my medicine, I didn’t even think about the ifs and buts of doing this. After all they’re the professionals in medicine why not listen to them, right?

Three days after the change in my medication I decided  to take my adventurous self and  go tubing on a friend’s boat. I remember it being an awesome day! But things turned wrong very quickly. I suffered a tonic clonic seizure on the tube, fortunately the people around me were strong enough to keep me above the water. I was taken to hospital to where my friends and family were told I would be fine to go home in a while. Unfortunately my body went into status epilepticus and to protect my brain I was placed in an induced coma and taken to the intensive care unit.  I went from being an active, fun and carefree person to a person now fighting for their life on life support that day.

So many complications occurred during the ICU admission including: kidney failure, heart troubles and rhabdomyolysis (all my muscles were wasting away) and when I had finally woke up and got my head around everything I was scared and in shock and in a little bit of denial that something so big has just happened to me. I thought of the why me saga a lot and what I had done wrong in  life to deserve this outcome. After all I was only 20 years old and the thought of learning to walk again was taking its toll on me.

The loss of independence of a once capable healthy body saw me feeling like a burden to everyone which, in turn, led me to withdraw and isolate myself away from nurses, family and friends. The adjustment of daily life which now consisted of needing help to do basic things, needles and painful physio everyday got too much for me. And being stuck in an elderly rehab facility where there is no one else your age to talk to or lean on for support made it a lot harder. I knew that dwelling on what had happened to me was going to be hard to stop, but with the help of a psychologist and a leisure therapist each day I was able to  think positive and see how much improvement I had made from the day before.

 10364070_10152031864781886_84908052_n

No one can ever be prepared for the tremendous impact, disruption  and despair that a life threatening experience can bring to one’s life. But if you can find strength, courage and determination to maintain a fighting spirit and a belief within yourself it can help you  get through another day.

Since the accident in 2011 I have regained my life and independence back. I’m back to being happy and living my life the way it should be lived! 🙂 I always get asked if I’m scared it will happen again? In the back of my mind I’m terrified at the possibility it could happen again and what if I’m not as lucky this time. But I can’t live my life thinking that way so I tend to live in the moment and make the most of what I have got 🙂

The next big journey in my life  is happening this year with the arrival of my baby girl in September and I’m ready to embrace motherhood and enjoy life. I’ll always have epilepsy but I will refuse to let epilepsy have me. We can do anything we put our minds to and don’t ever let anyone tell you otherwise. My life is just as normal as anyone else because I make it that way and don’t let epilepsy be the focus.  I’m ready to continue my life and take all the experiences I’ve learnt in recovery and turn it into something great ! I’m not one to give up and I know great things are waiting for me.

Isaiah’s Story

Meet Isaiah, he is 21 months old and has a twin brother, Preston.

IMAG3668
At 4 months old Isaiah started to act out of character and became very ill. He had his first seizure 19 days after getting sick. That seizure sent us to the hospital in an ambulance where we spent the next 3 weeks searching for answers. After 3 weeks of being hospitalized, the seizures were finally under control and he was discharged. He was ultimately diagnosed with meningoencephalitis & underlying epilepsy related to the Influenza A virus.

IMG_139074939549918

Isaiah’s neurosurgeon and neurologist believe his seizures were brought on by an undiagnosed illness (Influenza A) which led to meningitis and seizures.

IMAG3406

Today Isaiah sees Neurology routinely for his EEG every 3 months. He is on 3 medications twice daily: Phenobarbitol, Keppra, B6 & has Diazapam for emergencies. They have just started to wean him off the phenobarb due to the long term side effects. He hasn’t had a seizure since September 2, 2013!!! Woo hoo!! He is my small soldier and my warrior.

IMAG2813

Brenden’s Story

Brenden’s Story

Brenden was “officially” diagnosed with Epilepsy in June of 2008.  He was only 14 months old. We noticed that his eyebrows would move rapidly up and down and he would stare off for minutes at a time sometimes. He was only 10 months old. Before that began to happen, he was thriving, meeting all his milestones, even had some words down. Mom, Dad, milk, food, hi and bye.
1148782_442684562497530_791637297_n
We began to log all his seizures in a notebook and we would record 60 or more a day. We knew we were not able to see all of them either.
10003877_568182069947778_8154201194165447989_n
Shortly after his diagnosis he was put on Depakene and he responded well to the meds. Seizures decreased to maybe 2 a day. After 6 months he still showed seizures and activity so he was added a small dose of Lemictal to go with the Depakene. Immediately after the first half dose he developed a rash on his chest that within a hour was covering his whole torso. He is highly allergic to the Lemictal and I never administered another dose.
1655853_523510131081639_1235220148_n
Fast forward to 2014. Brenden is now 7 years old. He has gone through 4 different meds and is currently on 500mg of Depakote sprinkles a day. Soon he will be in a clinical trial and will be taking CBD oil, too.  He has been seizure free for 5 months and his neurologist is confident that the CBD will cure him and help him regain his motor function and help his speech also. His last hospital stay for EEG monitoring was still showing a few “sparks” not strong enough to be called spikes and no seizures. The MRI, which just a year ago showed that the left side of the brain (towards the back) was bigger than the right, came back normal.
10298283_568182039947781_4972959245540534634_o
Brenden is thriving always & keeping a watchful eye constantly. Life has been rough for Brenden but he keeps smiling and loving unconditionally. He deserves every wish his little heart desires. Unfortunately we can just give him his needs and maybe some wants, once in a while.
1975248_532239113542074_402596129_n
You can follow Brenden’s ongoing journey with epilepsy on his Facebook page: Friends for Brenden.

Hayley’s Life With Epilepsy

Hayley’s Life with Epilepsy

DSCF0210

 

When Hayley was born 10 days before my 42 birthday, I had every expectation that she would be just as she seemed: a perfect, round, beautiful baby girl with slate-coloured eyes and a swath of dark curly hair. And she was. In fact as she grew, she became even more than my husband Paul and I could have wished for: bright, chatty, quick, smiley and loving. She was exceptional to us.

DSCF0012

At the age of 18 months Hayley had her first seizure. We were just about to sit down for Christmas dinner at about 5 pm on Christmas Day. I had cooked a turkey for my side of the family so there were about a dozen of us. I picked up Hayley to put her in her high chair when suddenly she just threw up and then slumped lifelessly in my arms. My brother in law and father both had first aid training and they took her from me and looked her over as I called for an ambulance. The fire department arrived first and checked her out as the ambulance arrived. We traveled to the hospital in the ambulance and spent several terrified hours in the emergency ward. They examined her, took blood and X-rayed her. To this day she is very afraid of needles.

DSCF0259

To date, Hayley has had over 60 seizures, most of them in the last 3 and a half years, most of them tonic clonic. She started antiepileptic medication 3 years ago last September with limited side effects.

DSCF0278

This is what Hayley, now 16 and a half, has to say about living with epilepsy:

It is very hard living with epilepsy because I have to take special medication to be sure that I don’t have a seizure at school. If I did have a seizure at school I could fall down the stairs. I could actually die. This makes me feel frightened at times. I have had a lot of seizures lately so I have had an EA go with me to all my classes. I don’t miss out on anything though. My life is the way it should be.

For Purple Day, I have spoken at my old elementary school as well as to my LSB class at high school. I tell people about seizures and it shows people that I am a strong person. I have a learning disorder on top of having epilepsy. I thought it would be nice to talk to my class because they have their own issues so they don’t judge me. They understand.

One thing that I would like people to know is that I’m Hayley and I have epilepsy and I do a fantastic job of living my life with epilepsy. Epilepsy hasn’t changed who I am.

DSCF0128