“Epilepsy Awareness Month is over, but today kicks off Infantile Spasms Awareness Week.
What an ironic twist, just when you think Epilepsy Awareness Month is done, BAM, more epilepsy.
So I guess it’s fitting.
Infantile Spasms; we’re actually approaching our one-year mark with this diagnosis.
It sounds so nonchalant… if you don’t know what it is.
A more appropriate name would be ‘Brain Damaging Baby Seizures’ or ‘Good Luck Controlling These Evil Spasms.’
Infantile spasms can sometimes seemingly come out of nowhere.
It can take a typically developing baby and cause them to regress, causing permanent damage.
For some, if they’re caught in time and treated appropriately, the hypsarrhythmia (chaotic and disorganized brain activity) and spasms just go away.
Wilson does not fall into that category.
Unfortunately, many children diagnosed with infantile spasms are not saved by the front-line treatments.
We try med after med, feeling like we’re racing a clock, trying to control these spasms so our child has a chance at developing.
We endure high-dose steroids, we sign papers stating we acknowledge another front line med may cause permanent vision loss, we change diets, we stack drug upon drug, we weigh the pros and cons between seizures and side effects…
All for a chance at keeping these damaging seizures and the chaotic brain waves at bay.
I’m gradually watching Wilson slip further into the intractable epilepsy hole.
As the episodes get larger, we’ve stopped calling them ‘spasms’ and instead call them brief tonic seizures.
The Lennox-Gastaut Syndrome diagnosis might still be a couple of years away, but I see it looming closer much faster than I would like.
I’m gradually realizing that seizure freedom will be unlikely for Wilson.
Instead of focusing my energy on what will give seizure freedom, I find myself searching for what is going to make Wilson the most comfortable.
What med-cocktail is going to give him the best quality of life?
The diagnosis of infantile spasms a year ago, I didn’t fully understand.
Infantile Spasms are terrifying— to those who may have just received a diagnosis, you’re not alone.
If it remains uncontrollable, you’re still not alone.”
This story was submitted to Love What Matters by Heather. Follow her journey on Instagram. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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‘Your son has the worst epilepsy I’ve ever seen.’ It’s insane to have doctors ask how to treat your child.’: Mom shares son’s journey with Epilepsy through misdiagnoses, mistreatment to 3 years seizure free
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