Monday, June 26, 2017

Creativity and Epilepsy: Educating Children Who Witness Seizures

This post is part of the Epilepsy Blog Relay which will run from June 1 through June 30. Follow along and add comments to posts that inspire you!

Seeing a seizure no matter how many times they occur and no matter the age of the bystander, can be extremely traumatic depending on the type of seizure a person may be experiencing.  It is a delicate situation to tend to the person who is experiencing the epileptic event as well as comfort those who are witnessing everything unfold, especially when there are children involved.  As a parent, when you have a child with epilepsy who has young siblings you have to be very creative in how you handle all things related to seizures.  This includes conversations regarding seizures as well as when/if it comes to watching the episodes themselves.  

Being that Sonya began having seizures within one month of her life, they were less noticeable to others, however, Sonya is 5 years, 3.5 years, and 21 months younger than her older siblings, which means they were extremely young the first time they were exposed to seeing a seizure.  At the beginning they honestly did not notice one was occurring, but eventually as the seizures got longer and more intense, her siblings became more aware.  As parents, Sam and I did not want to scare our older children, but it was important they be aware of what a seizure looked like so if necessary they could inform us if they saw it occurring first.  For example, Sonya's car seat faced our then 5-year-olds and so while driving she would occasionally tell us "Sonzee is having a seizure".  There have been false reports, however, more often than not, the reporting is accurate and a huge help in beginning to comfort Sonya, both verbally, and for her sister who sits right beside her, physically.

There have been times when the seizures are just too overwhelming for us to want our older children to be around, regardless of how helpful they can be, and so we have to be creative in how we distract them.  Sonya went through a time when she required oxygen during the end of her seizures and for some time following the episode.  When she would begin her seizure typically another person (unless we were alone) would go and grab her oxygen and begin too hook it up to her.  For the majority of the time we were able to distract our older children by having them go and play in another room or go have a dance party, but once or twice our oldest would stop in her tracks and look at us placing the oxygen cannula on Sonya and ask if she was going to be alright.  We could tell she was scared and so we explained that Sonya was having a seizure and it was alright, but that sometimes extra air is needed to help people breathe.

Children in general can "make light" of many situations, and this includes seizures.  They can see someone making funny, weird, awkward, dramatic, and fast movements with their bodies and can think this is something to imitate.  At a young age it was extremely important for us to emphasize to our children that seizures are never anything to be made fun of and what is occurring to a person who having one is not pleasant, is not funny, is not weird, is not comfortable, and is by no means a joke.  It is also extremely important to balance sharing this information with young children in a manner that does not scare them, but does emphasize this is a high magnitude situation that should never involve laughing.

While Sam nor I are perfect in the ways we have chosen to be creative with our older children in regards to educating them on seizures, here are some ways we found helpful with our older children and their exposure to epilepsy.  We are not expressing that every parent should follow these ideas nor is every parent going to want their child to see a seizure, however in a lot of family situations it is simply impossible to prevent a child from witnessing a seizure, so it is always better to be as prepared as possible.

1. Talk and explain to a child who is watching the seizure what is happening to the person experiencing a seizure-reassure them that even though it looks extremely scary the person is going to be alright
2. Answer questions that a child may ask regarding watching the seizure
3. In general keep the lines of communication open between the child watching the seizure and the adult supervising
4. Be aware of the child who is watching a person have a seizure-are they are uncomfortable? are they scared? do they need to be distracted?
5. If another adult is present have them take other children in another room in a calm manner asking them to show them where an item is, or to go read a book, or have a dance party
6. Have older children help time a seizure or feel like they are helping you or the person having a seizure
7. The priority is on the person seizing, however, if seizures are routine and the person is stable, make sure to remain calm (always good regardless) and try not to scare the other children who are around

NEXT UP: Be sure to check out the next post tomorrow by Sarah Collard at for more on epilepsy awareness. For the full schedule of bloggers visit

Don’t miss your chance to connect with bloggers on the #LivingWellChat on June 30 at 7PM ET.

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Sunday, June 25, 2017 with CDKL5

It has been 13 days since my last blog post.  It is not that I have not wanted to write anything, it is more I just do not feel like I have anything new and/or worthwhile to share.  Things are what they are.  Neither great, nor bad, just what they are.  I suppose overall that is a good thing, but it does not support writing a blog post.  I feel like in the two years I have been blogging, I have already written about most of the same topics that are now on my mind.  The same things happen repeatedly.  There is not much new in the world of CDKL5 and how it has affected Sonzee, and so I feel like I have no new insights to share.  

Life with CDKL5 for me is a life on repeat.  There is the same heartache of CDKL5 sibling losses, lack of milestones achieved, and obstacles to overcome.  There is the same amount of joy felt for the Sonzee-stones accomplished and wishes for her future.  There is honestly a little less emphasis placed on hope, but that is probably due to me being a pessimistic/realist in general and not so much due to the events of the last two years.  Although the past two years have definitely stolen some positivity from my general outlook and beaten me to the core.  Sonzee's health is stable and so we are thankful for that, but that does not hide the pain she experiences daily or the seizures/spasms that come and go as they please.  

I have been spending a good majority of my time these past couple of weeks living in the land of denial and excuse making in terms of Sonzee's seizures and pain.  To be honest, sometimes that place is a comforting place to be.  I will probably do as I usually do when I enter this zone and hide out here until I enter the good old panic mode of desperation that this will inevitably lead to.  Until then I will just carry on, praying things remain calm while we are in New York, and praying for the families who have children with CDKL5 who are in the hospital, just being discharged, or who sadly just gained their wings...because this is life with CDKL5.

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Monday, June 12, 2017

Becoming aware

I prefer to do positive style posts because that is how it's best for me to deal with all things CDKL5.  The past week and a half I have spent each morning deciding which fact I would be sharing about life with CDKL5.  My goal is always trying to balance shedding light on some of our hardships while also putting a semi positive spin.  However, almost two weeks into this CDKL5 awareness month and it's safe to say it makes me more aware of just how tough life with CDKL5 is.

Over the weekend I wanted to share a fun fact or two about CDKL5.  I wanted to capture little bear completing some challenging task that requires her a bit more effort, or her sitting and being happy/content like a lot of other children with CDKL5 mutations.  I just wanted to share a picture of her adorable little smile, or maybe even capture a laugh...but none of those things happened.  So I skipped posting.  It's one thing to go on with our days experiencing each one of them as they come, but it's another to realize that things aren't so great.  I guess I don't give it much thought as a whole, but wanting to write a post makes me have to "accept" what exactly is going on.  

Sadly a typical day for Sonzee begins around 6:30am with her crying.  It takes Sam and I multiple guesses and attempts to calm her before she calms for a bit either in her bouncer, chair, or with some cuddles.  The calmness only last temporarily and then she's back to her cries and screams.  The rest of the day is a gamble of how much she will cry or be miserable.  The majority of days she spends clearly uncomfortable and so we spend the majority of our time trying to figure out what she is telling us so we can fix it.  We usually fail miserably and eventually we give up.  We change her position all day, give her cuddles, the kids attempt to play with her and entertain her- it's usually a major fail.  Eventually it's bedtime and thankfully she sleeps at night or occupies herself quietly in her crib.  Then we get to experience our own real life Groundhog Day on repeat...every day.

It's been challenging to adequately represent CDKL5 for Sonzee and be respectful of what I would think she would want me sharing as far as pictures and her day goes.  I guess this is the whole part of spreading awareness.  Letting others know they aren't alone if their child who has a CDKL5 mutation isn't always smiling and happy and reminding me that it's okay to be angry about the fact that this is the life of our two year old.

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Tuesday, June 6, 2017


In approximately 12 days we leave the oven we call Phoenix and head east for the summer.  I am pretty sure the timing couldn't be any better as I am beyond ready for a break.  It is different than needing a Starbucks run or getting a manicure or pedicure.  It isn't the same as wanting to go away from the kids for a night or two.  No matter what we would just be relocating to different scenery, we can't really escape the life we are living, and to be honest I don't want that either.  The way I look at our summer break is that we get to press the pause button.

I am ready to spend two months with limited distractions from the kids.  No (planned) doctors appointments, no therapy appointments, no waiting on hold to nag a distributor because we have been waiting a ridiculous amount of time to receive an item that we were assured we were getting weeks earlier.  I am ready to not have to sync calendars and organize a schedule.  I am ready to not have to wonder what creative rejection Aetna will send us in the mail for an item they have been covering for months on end, but randomly decided they just aren't in the mood to cover it any longer.  I am ready for an actual real life distraction.

I am ready to reconnect with those friends who I follow on facebook and see their adorable family pictures, but whom there wasn't enough time to actually talk to over the past 10ish moths. I am excited to see how our decision (okay, it was really just mine) to drive this year with four children seven and under pans out (this really should be some fantastic fun (sarcasm and honesty included).  I am ready to be surrounded by greenery, mountains, and farms that are tucked away from the hustle and bustle.  I am ready to not have time commitments other than times to drop off and pick the kids up from camp (which Sonzee and I can walk to to achieve and hopefully be on time too).

The last 10 months have been tiring, chaotic, daunting, and waring.  I am ready to get some renewed strength, some umph, and refill my energy tank to full to make it through the 10 months that will follow our homecoming in August.  I am so grateful that we are able to relocate for the summer and get away because I am so beyond ready to hit pause.

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