Tag Archives: Seizures Suck

Neurology Update

29 Jan

I’m going to keep this post short and sweet, and will work on a more generalized update in the coming week or two. Life is a bit chaotic right now, as I’m sure many of you can relate. 
 
On Tuesday Ladybug and I made the snowy trek to the London Children’s Hospital. It was a very long, but necessary day. 
 
Ladybug had been having an increase in tonic clonic seizures over these past two years, and thankfully, they now seem to be somewhat under control with medication. She still has them if she hasn’t slept well or is fighting off a virus, although they are pretty quick and don’t require *rescue meds. 

We have, however, noticed that watching her favourite musicals on the TV or lights turning on/off have been triggering something.  Tuesdays EEG confirmed what we were worried about. 
 
Ladybug is now having strong photosensitive/photoparoxysmal response (PPR) myoclonic seizures. When visual stimulation such as flashes of light, provokes an epileptic seizure, it is called a photic-induced seizure.
 
The general triggers are usually flashing lights (like strobe lights, camera flashes) or flickering images, even sunlight flickering between trees or on the water, television (TV), video games, and environmental lighting. This information all passes through the eye into a part of the brain called the visual cortex. The visual cortex then sorts out the images received by the eye. Flashing, flickering and repetitive patterns cause the visual cortex to be overloaded with images and this can cause a seizure in people who are sensitive to this trigger.
 
While we can certainly reduce the amount of triggers, it is simply impossible to remove them from Ladybugs life entirely. They are very difficult to treat, and because of the rate at which she has them and how quickly they are caused, we need to try and get them under control as soon as possible. She will be starting an additional medication immediately, with the hopes that it will help. The alternative is not something I wish to share or think about at this point. 
 
God willing it will work. If there is one thing I’ve learned in the past 11 years of being Ladybugs mama, it’s that she is one heck of a fighter. 
 
“And though she be but little, she is fierce.” Shakespeare
 
 
 
Our Princess - 4 weeks old
 
*Rescue Meds are generally fast-acting, which means they will start to work quickly to stop a seizure once they get into the bloodstream. 

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Just be Kind

13 Aug

Friday March 13, 2020 was the last semi “normal” day I can remember. The kids were still in school, and I was preparing for the 2 weeks off due to the Coronavirus.

As everyone is well aware, 2 weeks turned into 5 months. The longest March break EVER!!!

It was hard on all of us, the kids especially.  Ladybug really missed her school routine and her friends, the boys were loving it at first until we entered full lockdown and they couldn’t see their cousins. It was and is physically and emotionally draining.

On a positive note – having a child who is medically complex put us at a slight advantage over the average person in Canada.

  1. We always have a stockpile of hand sanitizer, disinfectant wipes, and diapers.
  2. Coughing or sneezing into the “crook” of the arm was taught before the boys could speak their first words.
  3. Our hand washing protocol is very strict here.
  4. The complex care team at the children’s hospital is on speed dial and scheduled a “what to do if” virtual appointment right away to make sure we had all the meds we would need.
  5. We are used to socially distancing during cold and flu season.

Now that it’s nearly September, we are facing a new set of challenges – preparing for back to school during a pandemic. I never in my wildest dreams imagined that face masks would be a part of our back to school supplies, n’or did I ever imagine having to decide if or when to send my kiddos back.

Every parent has the right to make this choice based on what is best for their family. As of now, we have chosen to send the boys back to school on September 8th, and I’m still waiting to hear what the plan is for Ladybugs school. I’m contemplating driving them back and forth, which means that my plans for when the kids return to school, will have to be put on hold again. It kinda sucks! It’s frustrating! However,  it’s our life now, and as crappy as it may seem at times, it could always be worse. Like I’ve written about before, it’s all about perspective.

Please remember to always be kind to one another, and try not to attack parents for their choice on sending or not sending their kiddos to school.   Whichever path they decide is the RIGHT one.

Just be kind.

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