Tag Archives: Myoclonic Seizures

A long overdue update

29 May

To say this past month has been unbelievably hectic would truly be an understatement. Aside from preparing for the upcoming arrival of a new baby, I’ve been busy in meetings and setting up doctors appointments to complete an admissions package for Ladybugs school. The admissions process began early this past winter and is now finally out of my hands and into the hands of the admissions board. I’m confident that Ladybug will be accepted into this fabulous school, however we should know for certain in the next week or so.

Health wise Ladybug has been holding her own. Her cold quota has dropped significantly since the preschool year began. She still catches bugs quite easily but is also able to fight them off faster and I’ve found the last couple didn’t result in bronchitis or pneumonia which is a fantastic sign.  The Myoclonic seizures are pretty much under control, however we’ve found when she is very tired or sick they increase in frequency. Once she recovers they subside again. So I certainly can’t complain at all about them. We met with her fabulous orthopedic surgeon a few weeks ago who informed us that from the looks of the latest x-ray Ladybug will not at this time require hip surgery.  YAY!!! Over the past few months Ladybug has gone through a huge growth spurt. Well huge in comparison to what we are used to seeing. At 4 1/2 years old she is now 25 lbs. Which is pretty gosh darn good.  Not only did she need some new summer outfits to fit her growing body she also required new AFO’s. (Ankle Foot Orthosis) While the new AFO’s were noticeably larger than her first pair they were still the second smallest set that had ever been made at that facility. The first smallest were Ladybugs original AFO’s. I’ll be sure to post some pictures soon.

I almost forgot to mention that to celebrate the end of an amazing year at Preschool and the *fingers crossed* start at a big girl school in September, it was time to retire those adorable hot pink glasses that Ladybug rocked so adorably. Not only had she outgrown them but they saw their final battle with a parking lot and a car a couple of months ago. Once I wiped the tears away (yes I bawled like a baby at the fact they were at the time lost and had most likely been run over – I blame it on all the baby hormones.)  I knew that it was time to begin the search for the perfect new pair.  This was also made easier by the fact that Daddy-O went to comb the parking lot after work and found the pieces of the glasses. At least they hadn’t vanished for good. Now Pembe Bear rocks them!

I can’t get over how grown up my sweet little Ladybug looks now.

New Specs

 

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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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