Tykes with Spikes

Tykes with Spikes Join us in creating hope and providing compassion, comfort and resources for families affected by Infantile Spasms (IS).

Part 2 of the "Neuro Guard United" Series!This week, we’re shining a spotlight on the vital roles that dietitians, genet...
10/01/2025

Part 2 of the "Neuro Guard United" Series!
This week, we’re shining a spotlight on the vital roles that dietitians, geneticists, and psychologists play in caring for our Tykes who experience Spikes (and their families/caregivers too). Their combined expertise is essential to creating comprehensive, supportive care.

Thank you for reading, and for all of your continued support!

LOVE seeing sporting venues take photosensitive triggers seriously! Huge shoutout to the Rose Bowl for being so mindful ...
09/28/2025

LOVE seeing sporting venues take photosensitive triggers seriously! Huge shoutout to the Rose Bowl for being so mindful and inclusive!!!

Neuro Guard United Pert 1: Behind every child’s epilepsy journey is a multidisciplinary team, doctors (neurology, neuros...
09/27/2025

Neuro Guard United Pert 1:
Behind every child’s epilepsy journey is a multidisciplinary team, doctors (neurology, neurosurgery, epileptology, genetics), nurses, therapists, and specialists, all working together to bring brighter days. Multidisciplinary care means every angle of health is supported, so our tykes don’t just live with epilepsy, they thrive beyond it!

Blog Post 4: The Trials, Tribulations, and Small Triumphs of Having a Child Hospitalized🔗https://tykeswithspikes.org/the...
09/20/2025

Blog Post 4:

The Trials, Tribulations, and Small Triumphs of Having a Child Hospitalized

🔗https://tykeswithspikes.org/the-trials-tribulations-and-small-triumphs-of-having-a-child-hospitalized/

This week I spent more days in the hospital with Owen after new seizure activity. Hospital life brings safety and support, but also fear, wires, and trauma. Owen has been a true trooper, even as his EEG shows ongoing irregularities.

While there, I witnessed another family saying goodbye to their baby, a moment that broke me open and reminded me how fragile and precious these lives are.

We don’t have all the answers yet. We’re heading to a top epilepsy center soon, holding onto hope, and cherishing every smile, cuddle, and milestone.

To all parents of medically complex kids, to anyone who loves a child through life's ups and downs, , you are not alone. 💜

💜 One of the best parts of this community is learning something new every day, not just about epilepsy, but about the in...
09/08/2025

💜 One of the best parts of this community is learning something new every day, not just about epilepsy, but about the inspiring people and resources out there.

Yesterday’s Neuro Nugget Weekly led me to Cassandra, author of the brilliant children’s book My Shaky World. Her journey is so inspiring, and proceeds from her book, bracelets, and bookmarks all go toward supporting epilepsy.

Check out her story 👉 https://myshakyworld.com
A beautiful reminder that incredible humans are out there, making a difference!

Neuro Nugget Weekly: Feature on LiteracyThis week’s focus is on literacy, particularly children’s books written about ep...
09/07/2025

Neuro Nugget Weekly: Feature on Literacy

This week’s focus is on literacy, particularly children’s books written about epilepsy. These stories are powerful tools for fostering understanding and inclusivity among teachers, siblings, friends, classmates, and even the children themselves. I’ve highlighted a few titles that touch on areas I find especially important, each offering unique perspectives and messages.

I’m also excited to share a new initiative: reaching out to libraries, starting locally and then expanding further, to encourage the inclusion of children’s epilepsy literature in their collections. This effort will extend to public libraries, children’s libraries, and school libraries. If you know of libraries that could benefit from receiving donations of epilepsy-related books, please reach out! We’d love to collaborate with you in making this possible.

On an Owen note, I’m thrilled to announce that Owen is back in the groove with books! He loves being read to and fully engages with each page, it’s wonderful to see his passion for reading rekindled.

Thank you, as always, for reading and supporting these efforts. Wishing you a joyful and smooth back-to-school season!

'Tis the season for back to school! Its a time to remember that seizure safety saves lives.Every student deserves a scho...
09/07/2025

'Tis the season for back to school!

Its a time to remember that seizure safety saves lives.

Every student deserves a school community that knows how to recognize, respond, and support them during a seizure.

From action plans to staff training, safety measures and rescue meds to reducing stigma and promoting inclusivity, there’s so much we can do 💜

Got carried away and was feeling like I was back in NP school pharm class doing an assignment. Enjoy my “Little Dino, Bi...
08/31/2025

Got carried away and was feeling like I was back in NP school pharm class doing an assignment. Enjoy my “Little Dino, Big Roar” presentation on medications for infantile spasms.

From ACTH to Vigabatrin, these mighty meds help our tiniest hatchlings fight big battles.

A huge RAWR of thanks to everyone who took the time to read and learn, you’re all dino-mite!

Together, we can make these tough times and big meds a little less scary for our little Tykes with Spikes.

In this week’s overdue Neuro Nugget: Owen continues to inspire us with his courage through new challenges, we’re explori...
08/28/2025

In this week’s overdue Neuro Nugget: Owen continues to inspire us with his courage through new challenges, we’re exploring fundraising with CHLA (https://secure1.chla.org/site/TR/DIY/DIY_Fundraising?px=3256853&pg=personal&fr_id=1570), and gearing up for Epilepsy Day at Disney in Nov! We'd love to feature your creativity through our “Design-a-Tee” Challenge: anyone is welcome to submit t-shirt designs for Tykes with Spikes for Epilepsy Day at Disney, message ideas to us, vote online in Oct, and the winning shirt gets printed to raise funds.! 💜 Dino-sized thanks to our community for the constant love and support. And a special thanks to for your phenomenal care of Owen... and the Jr. Fireman's hat too!

The Regional Center is such a gift! The transition into services is seamless, and the best part; you don’t even need a p...
08/17/2025

The Regional Center is such a gift! The transition into services is seamless, and the best part; you don’t even need a provider referral to get started! We’ve been amazed by Owen’s progress with his therapies and the incredible support team behind him.

If you have any questions, please reach out, I’d be honored to help you get connected with your own local Regional Center! 🌟

Blog Post 3:Life with an infantile spasms diagnosis means living under a cloud of 'what ifs.' Last week, Owen had what I...
08/10/2025

Blog Post 3:

Life with an infantile spasms diagnosis means living under a cloud of 'what ifs.' Last week, Owen had what I’m sure was another seizure type. We may never have all the answers, but we’ll keep pushing for them, while still hiking, playing, swimming, and living each day to the fullest.

🔗 Links to website and blog in bio. Please give it a read. 💜

https://tykeswithspikes.org/when-the-cloud-never-clears-questions-after-infantile-spasms/

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Los Angeles, CA
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