Tag Archives: Purple Day


26 Mar

Purple Day 2013

Today, March 26th marks the international day for Epilepsy Awareness. My very first post about today was back in 2013. I always find it interesting to look back on my previous posts and see how far we have or haven’t come and what has changed.

The biggest change is that we’ve discovered Ladybug is seizure medication resistant. We have tried all medications that are safe for her to take and none have had any positive effects on her seizure activity, especially since she’s been diagnosed with Lennox Gastaut Syndrome. The other thing that made me chuckle, but in a bit of sad way, was how I was so excited that Ladybug was a whopping 20 pounds. 5 years later she is now only 23 pounds (10.5 kg). Although, she is taller so that is a big win – she has grown from 71cm to 84.5 cm (28″ to 33″). That is 1″ a year.

In 2015 we talked about starting her on a Ketogenic blenderized diet. This never came to fruition. Given Ladybugs reflux and tummy issues, in order for us to get her on a keto diet she would need a GJ feeding tube. This bypasses her tummy and goes strait into her intestines. It would also mean continuous feeds and would impact her school time, and could still potentially cause an increase in reflux. The cons far outweighed the pros at the time so we opted to put that idea on hold.

After quite a bit of research we were able to get Ladybugs neurologist on board with trying CBD oil. Although it was very helpful in her overall health and wellbeing, it had no impact on her eeg results and seizures.

So here we are March 26, 2018, a lot has changed in 5 years. I’m still very hopeful that there will be some kind of treatment we will come across that will help with Ladybugs seizures. Perhaps now more than ever as the type of seizures she is having is slowly increasing. Last week Ladybug had her first absence seizure. They should typically only last a few seconds but her lasted over 2 mins, then this morning what started as a typical auditory triggered myoclonic seizure turned into an almost clonic seizure where her arm started shaking. Thank heavens she returned to baseline quickly afterwards. I don’t know what we will try next treatment wise – maybe a different strength of CBD oil, or perhaps there is a new pharmaceutical that might show positive changes in kids with LGS. I do know that I will NEVER stop trying to find treatments to help my little bug live the best life she possibly can.

Here is the link to the 2013 post that gives more of a background on Purple Day.


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.