Tag Archives: Epilepsy

Purple Day

26 Mar

Today, March 26 2013 marks the 1st official PURPLE DAY in Canada.

Purple Day 2013

Purple Day was first recognized as the official day for epilepsy awareness in Canada on June 28, 2012, in an Act of Parliament put forward by the Hon. Geoff Regan, M.P. for Halifax West. Bill C-278 met with resounding all-party support and became the only legislation of its kind in Canada. The Act demonstrates meaningful support to the 300,000 Canadians living with epilepsy and helps to reduce the stigma and discrimination that is often associated with the disorder.

You can read more about this amazing day in Canada here at the Canadian Epilepsy Alliance website.

For those of you who aren’t familiar with Purple Day, it was created by a young girl – Cassidy Megan from Nova Scotia, Canada in 2008.  Cassidy created the idea of Purple Day to share her own struggles with seizures and to get people talking about epilepsy.

Epilepsy affects over 300,000 Canadians and over 50 million people worldwide. My little ladybug is one of those people.

I’ve not really written much about her seizures, but couldn’t think of a better day than Purple Day to begin.  One of the characteristics of many children with Congenital Disorders of Glycosylation CDG is epilepsy. When most think of seizures they tend to think of what is known as a Tonic Clonic or Grand Mal seizure which is often depicted on tv and in the movies. Truth is there are dozens upon dozens of types of seizures.

Ladybug has what are known as Myoclonic Seizures. (myo meaning “muscle”, clonic meaning “jerk”) These result in an increase in muscle tone.   Those suffering from myoclonic seizures typically react as if hit by a single jolt of electricity.  Usually in Ladybugs case her arm or arm and legs stiffen up and go straight out and her eyes are wide open and look up and to the left side.  These “episodes” happen anywhere from 1 to 10+ times a day, every day.  As each person is different it is a big gamble as to which medication will work.  Initially the doctors tried one called Vigabatrin. We were told it would make her a little groggy.  That was a huge understatement.  Thank heavens she was in the hospital because after 2 doses she went into a coma like state and we were unable to wake her up for several hours. She has since been taking Keppra (Levetiracetam) and the dosage has been slowly increased over the past year and a half. Up until this past month I hadn’t really noticed a difference in the quantity or length of the episodes, I say this because with this last itty bitty med increase she is down to under 3 noticeable seizures a day.

Myoclonic seizures are often only one manifestation of a mixed seizure disorder, and they can be very serious. For this reason we see Ladybugs Neurology team every 4-6 months and monitor and record her seizure activity daily.

Along with the decrease in noticeable seizures, Ladybug is also healing very nicely following her port removal and Mic-Key insertion two weeks ago. I must also add, that as of today she is  a whopping 20 pounds and 28 inches in length!!!!  Even though her little princess diva attitude is becoming more prominent as days go by, I’m so happy for each and every one of these little milestones.

Ladybug in all her glory wearing a purple dress for Purple Day.

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More Denial Than Shock

31 Mar

I’ve heard many talk about the 7 stages of grief not only when it comes to a loved one passing, but also when you receive news that is life changing.

For 15 months I’ve been concerned about my daughter having potential seizures. She has always had abnormal eye movements, and gazing periods. This past summer we had a video EEG done which showed a Hypsarrhythmia (abnormal spikes in the brainwaves). The first thought was that it was Infantile Spasms so she was put on a med called Vigabatrin. All I remember of that moment was my sweet little girls heart rate dropping quite low, and being in an almost comatose state. A second EEG showed that the Hypsarrhythmia hadn’t improved and I told the docs I want my ladybug off those drugs.

Fast forward to our current stay at the hospital. I wanted to get neurology on board right away. Especially considering the “episodes” that ladybug is having seemed to be more and more frequent. After speaking with neurology the first time it brought me back to when we were waiting for the CDG diagnosis. Part of me hoped that the test would come back positive so at least we would know what was going on.  Then the other part hoped that they wouldn’t find anything.

Today we got an answer – my sweet little ladybug is having seizures. Any CDG parent will tell you that seizures are one of the main things you pray your child will be spared of. Because they are more common in type 1, I never really thought that we would have to worry about this.

I find myself, strangely enough, in denial. It’s crazy considering I’ve been pushing for over a year to see if these “episodes” were seizures. I keep thinking to myself, maybe they are wrong. Maybe it’s just a quirky little eye movement thing that she’ll have going on. Maybe it’s a new form of super hyper nystagmus and we’re the first case ever. It can’t be seizures, she’s still a baby, she already has so much going on with her little body.

Tomorrow we speak with the neurology nurse who will explain the new medication called Topamax that ladybug will likely start mid morning.

So now we wait and hope that these meds will help, and won’t keep my happy baby girl captive under a sedated spell – but release her from the one that the seizures have held over her for the past 15 months.

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