Epilepsy: beyond medication.

 Today is PURPLE DAY!  Are you wearing your purple?

Purple Day is a Worldwide epilepsy awareness day that was founded by Cassidy Megan, and is celebrated every year on March 26th. Visit www.purpleday.org to learn more!

Today I will share information about alternatives to medication.

For about a third of the population, medication does not control seizures.  This condition is referred to as having “refractory” seizures or “intractable” seizures.  For these people, one option is neurosurgery. 

 Seizures have a specific focus in the brain from which they originate, and if this focus can be identified it may be possible to remove it surgically.  The trick is to be able to remove the seizure focus while preserving function from that area of the brain.

 Around 70% of people who have temporal lobe surgery actually become seizure-free, and approximately 20% have a reduction in the number of seizures they have.

 Amanda began advocating for neurosurgery for herself when she was in the 8^th grade.  

We knew that her seizures began in the left occipital lobe, the area responsible for vision.  This is actually a rare type of epilepsy.  Amanda would see flashing lights or colours, and she often lost her vision for several minutes.  She continues to have periods of temporary blindness today.

Once extensive pre-surgical testing was complete, we knew that she also had a second focus in the right parietal lobe.  Parietal lobe seizures are also very uncommon.  Seizures in this area of the brain can occur in clusters, happening frequently throughout the day.  They can “cause sensory disturbances such as heat, numbness or electrical sensations, weakness, dizziness, hallucinations, distortions of space and other symptoms.” (https://www.hopkinsmedicine.org/health/conditions-and-diseases/epilepsy/focal-epilepsy)  They can also result in “Todd’s Paralysis” which is a temporary paralysis during the post-ictal stage of the seizure.

 Given this information, Amanda chose to go ahead with the surgery, understanding that she would never be able to drive as she would lose a significant amount of vision.  Her feeling was that she already had visual anomalies caused by her seizures, and that it would be worth it just to have a day with no seizures at all.

 Amanda’s surgery was performed at The Hospital for Sick Children with an amazing medical  staff.

 During the 6 hour procedure they discovered that her frontal lobe also had extensive foci, too large an area to consider removing as this is the area of the brain that involves executive functioning and decision making. 

 The doctors decided to make small cuts along the frontal cortex to sever connections and hopefully stop the seizure activity from traveling across the lobe.  These cuts are known as sub pial transections.

 Seizures in the frontal lobe present in different ways; there can be movement of the eyes and the head to one side, difficulty speaking, or unresponsiveness. Symptoms include depression, impaired memory and a dramatic change in cognitive function affecting executive processing, language, attention, and behavior. (https://www.epilepsy.com/living-epilepsy/epilepsy-and/professional-health-care-providers/resource-library/epilepsy-behavior)

 

In many cases, surgeons are able to isolate the focus causing the seizures and remove it completely, allowing the patient seizure-freedom. 

 

In Amanda’s situation, they discovered that the first focus in the occipital lobe went far deeper than anticipated and they could not remove it entirely without leaving her completely blind.  Her surgery drastically reduced her generalized seizures.  Unfortunately, the partial seizures remained uncontrolled.

 

If you are interested in the brain, there is a picture attached that shows Amanda’s brain with the occipital and parietal lobes outlined for the planned surgery.  If you are squeamish, scroll past!  Disturbing photos are marked "Warning:  Graphic Image."

 

Medical knowledge and skills for epilepsy surgery are constantly improving.  Technology has made a huge impact on what can be done.

 

This article focuses on the areas of the brain affected in Amanda’s situation. Seizures can originate in any part of the brain.  To learn more about epilepsy brain surgery you could investigate these links:

https://epilepsytoronto.org/about-epilepsy/learn-about-epilepsy/epilepsy-surgery/

https://www.uhn.ca/Krembil/Pages/epilepsy.aspx#Services

https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgery/types-epilepsy-surgery

Warning Graphic Image:

This was an image taken of Amanda's brain during the grid mapping.  The yellow outlines indicate the areas the surgeon planned to resect.  He found more than he bargained for when he got inside.  Dr. Rutka was her amazing neurosurgeon. She told him she loved his surgical cap so he gave it to her!

Her brother shaved his head in solidarity when Amanda was preparing for surgery.

Her stuffed bear went into surgery with her, and came out with the same bandages.  Bless the nursing staff at Sick Kids.  They are so good!

Receiving her medal of bravery.

Warning:  Graphic Image

Just a few staples and stitches to close up...

Sporting the pirate look to cope with double vision after surgery.

And best of all, a visit from the PAWS Therapy dog, Blue.

There's nothing like a dog to raise your spirits!

Cute photo of Cable, just because.  

Celebrations!

 It's been a busy week and I wanted to share some reasons to celebrate!

We have had some wonderful contributions to Cable's Calling recently and our total raised to date is $17, 700!  If that isn't a reason to celebrate, I don't know what is!  Pluto would be howling in his Plutoverse. :)

Thank you to everyone who continues to donate, share our pages and like our posts.  We love it when you spread the word!

St. Patrick's Day was a great day to celebrate, and was my birthday, as well.  John chose to celebrate it at Toronto General Hospital having a heart procedure.  It was very successful, so a good choice of a way to celebrate apparently!!

Cable knows how to dress for St. Patrick's Day!

Cable has decided the Leafs are her favourite team!

Looking spiffy!

Amanda is celebrating her birthday today!  Her are some greetings her friends have sent;  thank you Kim Nelson, Anna-Marie Kristensen and Heather McLeod.

                     Happy Birthday from Kira, via Kim Nelson.

Happy Birthday from Forrest via Anna-Marie.

Happy Birthday from Cable sending virtual kisses with Heather.

Lots of fun!  Thanks for reading!  Please as always, feel free to share our links and like our posts!

https://www.facebook.com/pg/Cables-Calling-Born-to-be-a-Service-Dog-101555021631826/posts/

https://cablescalling.blogspot.com/

Donate here:  https://bit.ly/3fvYtxd

Throwback Thursday!

In healthier times we have been able to go out into the community (and beyond) to spread awareness about epilepsy.

Thank goodness for technology so that we can still share information even though we can't yet go out in public!

You are always able to access information about epilepsy from these websites:

EPILEPSY FACTS

https://epilepsyyork.org/

Epilepsy Facts from Epilepsy Canada site:

https://www.epilepsy.ca/epilepsy-facts.html....

Types of Seizures: (from Epilepsy Canada)

https://www.epilepsy.ca/seizures.html

Here are a few shots of our family helping to spread knowledge and awareness. Every time someone asks a question about Amanda's service dog it leads to sharing information about epilepsy.

Please share our links and this post to help education the community about epilepsy and service dogs. Thank you!

FACEBOOK

https://www.facebook.com/pg/Cables-Calling-Born-to-be-a-Service-Dog-101555021631826/posts/

BLOG

https://cablescalling.blogspot.com/

GO FUND ME

Donate here: https://bit.ly/3fvYtxd

https://www.gofundme.com/.../cables-calling-born-to-be-a...

HASHTAGS: #CablesCalling #servicedogtasks #workingdogs #seizureresponsedog #seizures #epilepsy

March is Epilepsy Awareness Month in Canada

 We are SO grateful to have received enough donations (both cash and through Go Fund Me) to cover another month of training for Cable!!  We had one incredibly large donation last week, which really helps our cause.  We still have around 20 months to fund-raise for.  If you can share our posts to spread the word, we would really appreciate it! 

Thank you to everyone for your continuing support.

As March is Epilepsy Awareness Month in Canada I thought I would share some information about Amanda's seizures.

There are many different types of seizures and they all present quite differently.

Amanda’s seizure types have changed throughout the years.  These are her current seizure types, and this is how a service-dog assists her.

Tonic clonic/generalized onset—This presents as the body jerking.  In Amanda’s case it usually begins with one arm convulsing, to eye and mouth twitching and eventually spreads to involve the whole body. In almost all cases she loses consciousness with these seizures, and requires emergency (“rescue”) medication to stop them.  Amanda’s dogs are trained to recognize the movements of this type of seizure as a signal to press the emergency button, summoning help.  As mentioned in a previous post, Amanda has a history of Status Epilepticus, a state in which the seizure will not stop unless rescue medication is administered, generally by means of IV.  Immediate action is necessary.  Since Amanda lives on her own, activation of the emergency button is a life-saving action her service dog can provide.

Cable is learning this task.  Recheck the January 14th post to watch the video of Cable learning the first steps to press the button!

Simple partial / focal aware—During these seizures Amanda becomes temporarily blind but remains aware.  These seizures may be brief but can appear in clusters.  They are her most common type of seizure, and occur daily. Amanda’s dogs respond to the cue, “Kisses,” to lick her hand.  This helps to shorten the seizure.  If the seizure is more than a few seconds and Amanda is walking at the time, she can cue her dog to find her a “seat” so that she can sit while she recovers from the seizure and regains her vision.  If she loses her sight while crossing the street her dog is trained to pull her quickly to the other side out of traffic.  The dog will also stop her from beginning to cross the road if Amanda’s seizure activity prevents her from giving the dog the command to enter the street.

Kira learning to give "kisses" when needed.

To the average onlooker, these focal aware seizures may not be apparent, yet they could potentially put her in danger.  Her seizure-response dogs keep her safe.

Simple partial/motor onset aware  Amanda often experiences this type of seizure upon waking.  Her hand and/or arm begins to twitch or shake.  She is conscious and aware during this type of seizure.  For the most part, these seizures subside on their own, but they are unsettling.  Amanda’s service dog will climb into bed with her to provide some comfort through deep pressure therapy, or to calm her anxiety by just snuggling with Amanda.

Complex partial/focal impaired awareness—When this type of seizure occurs, Amanda is conscious but may be confused, and not able to understand or respond appropriately.  She may have small repetitive movements and she may wander.  Her dog will remain with her, leashed around her waist, and will be able to prevent her from walking into dangerous situations.  When she comes out of the seizure and awareness returns, Amanda can cue the dog to take her “Home” or to a familiar spot, as she will often be in a confused state and will not recognize where she is.  Her dog knows the neighbourhood well, and will guide her home.

Stay tuned for more information about epilepsy and seizure-response dogs this month!

And please share our links.  

GO FUND ME:  https://bit.ly/3fvYtxd

BLOG:  https://cablescalling.blogspot.com/

FACEBOOK:  https://www.facebook.com/Cables-Calling-Born-to-be-a-Service-Dog-101555021631826/?view_public_for=101555021631826BLOG