Our Personal Epilepsy Journey

"Epilepsy not only affects the people or persons having the seizures , Epilepsy can affect the entire family."

You wonder why I ask you to help raise awareness when you , your loved one or friend doesn't have Epilepsy? At one point, my daughter didn't either .

My daughter ( age 8 ) one afternoon was sitting watching TV & all of a sudden her cheek started to shake & a bit of drool started coming out of her mouth , I had never seen anything like this before so I asked her to get up ( my thought was parental instinct , get her to bathroom before she throws up ) . I called 911 as I was very unsure of what I was dealing with , the dispatcher said they were sending an ambulance with no lights or sirens & if she was to have another episode to call back, it seemed to take forever ( my thoughts during any type of emergency) .

We went to Burnaby hospital , they told me she had had a seizure , I had never heard of this before but they also said that because it was her very first seizure they were sending her home & I was to monitor her . Imagine being told all this and trying to register it in your head , something you know absolutely nothing about .

Oh did I mention I was 6 months pregnant with daughter #2 at the time ?

So now we are back home , the next morning I get up & something in my mind says , have a shower something is going to happen, not soon after the shower , my daughter has a second seizure , now I'm scared, absolutely no clue what to think , 911 call , ambulance comes , back to hospital we go , this time Melody is admitted for 3 days to have a series of tests done, it is then after an EEG it's determined she has Epilepsy ( my thought , wth is that?) . Any questions I asked noone couid give me an answer only add to the stress I was already feeling ontop of being in my 3rd trimester of pregnancy almost . My biggest fear was not for me but for Melody because if I'm worried & scared , how much more must she be experiencing whatever this thing called Epilepsy was ?

June 23 came , and the birth of Melody's sister , excitement & other thoughts , the birth was 2 & 1/2 hours , the contractions were so fast I couldn't concentrate so much on my mind .I am very grateful both daughters were natural birth , I really do believe angels were watching over us & still are to this day .

Two weeks after the birth of Melody's sister we were sent to BC Children's Hospital for Melody to meet a neurologist named Dr. Kevin Farrell , he was Melody's neurologist over the next few years , Many tests including EEG's , medication experiments to find which drug was best suitable to help control her seizures , Melody was an outpatient.

I do remember faintly a time ( day before Halloween) where Melody had a seizure longer than 5 minutes , we took her to children's hospital in Vancouver ER , after a bit she had a 2nd seizure while in Emergency room the neurologist was able to witness , as a parent while worried about Melody , my thought was " finally they see what I see " . Melody was admitted to the pediatric neurology area of hospital for 6 days ( series of tests EEGs etc .) . The next day ( Halloween) we were invited to help with decorations while at the hospital , I asked if anything special was going on as Melody missed out on trick or treating in the hospital the day she was admitted ( oct. 30th ) . I remember the nurse saying just decorating but nothing really was happening Halloween night, I looked up & saw a bald guy he looked really blue , turns out the Adams Family was filming in Vancouver & they came to the hospital to visit families on Halloween , they were so very kind & funny , it sure made us forget even for a little while why we were at the hospital . Melody missed going out trick or treating that year , a couple people in the neighborhood unexpectedly collected Halloween candy for her & gave it to her when we arrived home from hospital 6 days later . This was a very stressful time as a parent ( being away from Melodys sister ) , staying at hospital for 6 days , trying to take in all this info & feeling helpless watching my daughter have seizures , the highs & lows of watching my daughter being put on & being taken off meds ( doctors experimenting to see which one would work ) . It wasn't until we went to see a Dr. Karen Bateman ( neurologist #4 ) in New Westminster Canada that she suggested a new med , Keppra for Melody to try , ( Melody was in her teens then ) . It seemed to take a while adjusting to this one, Melody & the neurologist came quite close ( almost like friends ) , Melody would make dr . Bateman art work & Melody felt comfortable talking to dr. Bateman about anything , sadly , Dr. Bateman left her practice in BC Canada & moved to the USA , Melody was heartbroken . Dr. Bateman will never know the positive impact she had on Melody, for that I will be truly grateful.

Melody went seizure free for approximately 3 years . We felt it was okay for her to attend a school dance , well there were strobe lights , the lights caught her eye the wrong way & Melody had a seizure , Melody was able to tell her friend & the friend plus the parent made sure Melody got home safely . Melodys seizures had returned , sadly .

Back to the drawing board .

EEGs , more tests , experimental drugs .

One weekend Melody had 6 seizures , so the family doctor upped the dose of the medication to get the seizures under control , Melody had a massive weight drop & went as low as 79lbs , her health & schooling was affected to the point that we were told she may not graduate in 2009 .Our family doctor moved , so we were able to find a great new one ( family doctor), within 15 minutes he was ordering her Ensure plus ( protein drink ) & giving us both advice on what to do, more tests & EEGs . He ( doctor ) was genuinely concerned about her ( as was I) We had a teacher come to the house until Melody was strong enough to attend school so she could catch up & graduate grade 12 . Each day we walked to the school Melody & I , she would take part in 1 class for an hour then we would walk back home , Melodys sister was in Elementary school by this time ( lots of walking for this single mom but worth it for my girls) . In 2008 , i happened to see something on Facebook about this young lady ( Cassidy Megan of Nova Scotia Canada ) & a cause called "Purple Day , supporting Epilepsy around the world " , something our family could relate to , I asked my girls what they thought & if it was something they want to be involved in here in BC ? After doing more research, the answer was yes ! That's how we found out about the Epilepsy Awareness campaign .

Melody defied the odds she was given by doctors , school & others attended Emily Carr summer art program ( summer ) as part of her graduation program she chose and graduated grade 12 in June ( Melody 1 , Epilepsy 0 ) . She attempted to take part in early Childhood education course with me but she found it too fast for her , so at Christmas time she resigned from the course , opening the spot foranother . No one seemed to understand why she stopped , but I knew & she knew the doctors knew, as much as we tried to explain, they just didnt seem to understand .

We were introduced to a new Neurologist #5 at Vancouver General Hospital , the first meeting with him was very long as he was gathering family info etc . At the end of the first visit he told Melody , I believe you , you have Epilepsy .

In 2015 after an EEG , Melody was rediagnosed with Generalized Genetic Epilepsy & photosensitive seizures, Melody was kept on the same medication as prescribed by Neurologist Karen Bateman , #4 neurologist for Melody before she moved to the US .

Her medication dose with the newest neurologist was increased to 2000 mg a day , Melody still takes the medication twice daily to this day & for the foreseeable future.

Update : it is now 2019 , neurologist #5 has retired ( Dr. Javidan ) so we are back to family doctor for prescriptions etc . , Until they can find neurologist #6 that specializes in Melodys type of seizures .

Melody sometimes has a problem with her memory so to help her out , I wake each morning & put her daytime meds n a tiny cup beside her bed so she can take it before noon each day , nighttime routine is a bit different , I just need to remind her to take it before bed . It was suggested to get a daily pill container but we found if I didn't remind her or set it out the daily reminder container wasn't really helpful for us in this case . My daughter is not a burden & I am happy to help her if it protects her even a bit ( memory ) .

Melody also wears special lenses in her glasses to protect her eyes ( transition lenses ) .

Photosensitivity is tricky, it affects each person differently ( between 3-5% of people are photosensitive I'm told) , I guess that puts photosensitive seizures in the "rare" spotlight? I'm truly not sure tbh .

Melody since being diagnosed has stayed away from events that have lazer , flashing , strobe, pyrotechnic displays such as concerts , fireworks, dances , sporting events , also if emergency vehicle lights catch her the wrong way a seizure is possible . Also we no longer attend movie theatres as flickering movie screens can & have caused her to have a seizure . ( I stay away from those type of events to support her , I find this a challenge for me personally as i want to be there for both daughters , having to choose is very difficult as a single parent , you want to support both without playing favorites , I think I screwed up in this area a lot over the years .)

Melody has been told by Neurologists absolutely NO driving until you are 1 year seizure free , then she must undergo a series of tests with neurologist before given permission , we are hoping one day she will get the chance but for now we work with what we are given .

Melodys younger sister attends movies, concerts , etc & when I ask Melody how she feels when she sees that her sister can do what she can't, Melody says it hurts but she has learned to accept it .

As a mom that hurts me ( parenting thoughts ) & I worry about Melodys mental health .

All that being said , Melody is a very quiet , shy , talented painter, tiny clay figure artist , very kind to others.

I learned about Sudden Unexpected Death in Epilepsy ( SUDEP) approximately 2 years ago ( 2016/2017 ) via a social media post on Twitter, we asked my daughters neurologist about it & were told even tho my daughter's risk was low there is always a chance, imagine if we had never had asked ? I really think SUDEP needs to be mentioned by Neurologists each visit , Awareness is key . I talk about SUDEP more on this site ( different page ) .

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I want to thank everyone who has supported us emotionally on this journey , it is not over yet & we are not giving up hope .

There is still much more awareness to do worldwide .

My daughter is 1 in 65 million people worldwide who fights Epilepsy daily , our family is in this fight together & i will continue to advocate for her & others .

I AM A VOICE FOR Epilepsy Awareness 365 days a year .

We are so very grateful for support from organizations such as :

- Vancouver Canucks Mascot Fin Orca

- Vancouver Canadians Organization , including mascots Bob Brownbear , Miss BC Springroll , Wasabi & more

- Vancouver Whitecaps , including Mascot Spike

- Canucks Family Education Center [ that info is on the " About Me " page on this site ]

- Easter Seals Camp Squamish

- Variety Club B.C. & Variety Boat For Hope

- Cinderella Project

- BC Children's Hospital - Neurology & EEG Clinic

- Burnaby Hospital - Neurology & EEG Clinic

- RCH in New Westminister - EEG Clinic

- Vancouver General Hospital Neurology & EEG Clinic

- All emergency responders whoever helped us in an emergency when dealing with Melody's seizures

- B.C. Epilepsy Society in Vancouver

- The Center for Seizure and Education in Abbotsford BC

- Our family doctors , pediatricians & neurologists who also have a very important role in caring for Melody & still do today

- Lions Society of BC

There are so many more people that have supported whether thru educating us , emotional support , i wish i could remember you all . My sincerest apologies if i forgot anyone .

SINCEREST THANK YOU TO YOU ALL , YOU ARE THE REAL MVP'S !

our story & journey is not over ....

* UPDATE July 23 , 2020 *

On July 22, 2020 , i was priviledged to be able to sit in along side my daughter on a Zoom Virtual meeting with my daughter's new Neurologist from the Epilepsy Clinic { Dr. Percy } , some things that were discussed :

- When was first seizure ?

- did she { daughter } have a normal birth ?

- daughter's age now

- right or left handed

- talked about " out of body experience " , Melody had these type of experiences in the past & explained to the neurologist ow she was able to bring herself back to reality by pressing her fingernail into her thumb & it seemed to work each time .

- talked about school ( most favorite , least favorite & struggles ) .

- when seizures changed after attending a halloween themed school dance , how she dealt with this situation > [rediagnosed Photosensitive - EEG determined } .

- facial twitching , a common type of seizure with her type of epilepsy { duration etc ) .

- How to help during a seizure ? lay person on "LEFT"side NOT right side { i did not know this } , move anything that may cause harm to person out of the way [ table , toys , make the surrounding safe } , NEVER put anything in a person's mouth .

More was discussed when i started asking questions :

1 . Medications my daughter has taken previously - Epival , Lamotrigine (they are checking Children's hospital file to see if there are more, also checking for any bad reactions to meds } .

2 . Medication refill - Keppra dose to remain the same { 1000 mg 2x a day } , folic acid reduced from 5 mg - 1 mg }

3 . Emergency meds - not unless seizures increase { daughter had emergency meds before , this question was for clarification } .

4 . SUDEP risk - Risk is low BUT there is always a chance , DO NOT MISS A DOSE OF SEIZURE MEDS !! { Sudep i also discussed with previous neurologist who since retired , it was never brought up before that , i learned about it on social media a few years ago }

5 . seizures in sleep - nothing currently on file

6 . How to reduce stress - take a walk outside , meditation & yoga Youtube videos , deep breathing 15 minutes a day , mindfulness , take breaks from video games

7 . Epi watch - one is currently not needed , this may change if seizures change

8 . Discussed New EEG test needed , also MRI - Daughter told neurologist she asks for a towel to protect { cover } eyes from laser , also knew bloodwork { to see how the meds are helping + other stuff } .

it was a lot of information covered in an hour long meeting , next meeting in 6 months unless any changes .

My final comment before meeting ended *YOU ARE A ROCKSTAR !! * { i said to my daughter , neurologist agreed } .

I can only say what i've seen through a parents eyes & a parents journey, my daughter's story is her own .

Thank you to everyone for your ongoing support <3

The Journey is far from over ...

- lorrie