Families Walking Alongside Children With Epilepsy — Let's Connect

Posted by Chris Gautier, Volunteer Mentor @santosha, 2 days ago

Hi Everyone!
Over time, I've noticed how many of us here are family members navigating epilepsy alongside a child — carrying not only the practical weight of seizure management, medications, and medical appointments, but also the emotional weight that comes with watching a child struggle.
So, I thought it'd be lovely to have a dedicated thread where these families can find one another, share experiences, and offer mutual support.
Whether your child was diagnosed as a newborn, a young child, or as a teenager, whether you're just beginning this journey or have been on it for years — this is a place to share what’s helped, what's been hard, and what you wish you'd known earlier.
I'm tagging some of the members I've come to know in our group who are on this journey — @keeg1010 @ebrown78 @happyrivers9 @laurabeck @hattenburg5 @debra54 @jdebono @sg325 @adoptivemother @kymill @mphaddican @minajo @zeljmar @acpsulli @sb7 @melissa1234 @tchandos @terin82 @bearbayou @frandex @jemollica — and I warmly invite every parent, grandparent, sibling, or caregiver to join this conversation. If I haven't mentioned your username, please know that was memory, not intention. This space belongs to all of you.
What's been your greatest challenge? And what's helped you most — practically and/or emotionally?
Chris

View Translation

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

tchandos | @tchandos | 2 days ago

Thank you so much Chris! What a blessing this is.

Tracey

louissc | @louissc | 1 day ago

Hi,

I know this problem won’t be seem as a “job” but an act of love and even duty which will be subjected to stares from others who are not exposed or understanding enough the nature of this condition.

This will certainly help give support to everyone who is in similar situation.

Cheers,
Louis

keeg1010 | @keeg1010 | 1 day ago

Thanks Chris. I am going to try and post something I read a very long time ago that really touched me.
Kerry

Chris Gautier, Volunteer Mentor | @santosha | 8 hours ago

In reply to @tchandos "Thank you so much Chris! What a blessing this is. Tracey" + (show)

@tchandos
Hi Tracey!
Thank you for joining this discussion!
If I remember correctly, your son went through quite an intense period — 18 tonic-clonic seizures in just 5 months, before Mayo found the right medication regimen, keeping him seizure-free for a couple of years.
Would you feel comfortable sharing a little about what that journey looked like during the harder stretches — what helped your family navigate the uncertainty, the adjustments, the day-to-day weight of it all? I think it would mean so much to families who are still in the thick of it to hear from someone who has come through to the other side.
Looking forward to hearing how your son has been doing lately!
Chris

View Translation

Chris Gautier, Volunteer Mentor | @santosha | 7 hours ago

In reply to @keeg1010 "Thanks Chris. I am going to try and post something I read a very long time..." + (show)

@keeg1010
Thank you so much for sharing this, Kerry! "Welcome to Holland" is such a beautiful and moving piece. It captures so perfectly that feeling of having your plans changed in an instant — and the slow, tender process of learning to find beauty in the life you didn't expect. And I think it resonates with the way you have been facing your son's epilepsy journey.
You've walked this road with such resilience and with a positive spirit — something I've always admired and that's been a real inspiration to me. 💜 Would you feel comfortable sharing with the group some of what's helped you most along the way — practically and emotionally?
Thank you for being part of this conversation.
Chris

View Translation