Thank you for all your concern about d…



Since Wednesday’s incident, we Marrtians  have been adjusting. 

Reading statistics.  

And researching papers. 

And taking practical measures for when the next seizure hits. 

So the research ~~

Tonic-clonic seizures. Commonly called “grand mal” seizures, this type of seizure causes loss of consciousness, as well as violent shaking and body stiffening. 
The clinical decision as to whether an epileptic seizure has occurred should be based on the combination of the description of the attack and different symptoms. 

Many people presenting with a dramatic first generalised tonic-clonic grand-mal seizure have had previous, undiagnosed simple focal seizures or focal dyscognitive seizures, absence seizures or epileptic myoclonus.
Generally there’s a 50 percent chance of the seizure recurring, Kossoff said, most often within six months of the first seizure. But certain flags, like an abnormal EEG or MRI changes, may raise the risk of recurrence to as high as 90 percent. 
For most people, once they started having seizures they continued more or less frequently. For a few, after one initial seizure, everything went quiet and seemingly back to normal, only for the seizures to come back months, or even years later.


There are few things more terrifying for parents than witnessing their child having a seizure. Clinicians who work with these families can attest to the fact that one of the most commonly heard fears following a seizure is, “I thought my child stopped breathing and was going to die.” In many cases, these children are transported emergently to the hospital, have a computed tomography (CT) scan of the brain, have blood drawn, are observed for a few hours, and are then discharged home with instructions to follow up with their pediatrician. 

1 in 26 people in the United States will develop epilepsy at some point in their lifetime.


About half of the people who have one seizure without a clear cause will have another one, usually within 6 months.


If you have two seizures, there’s about an 80% chance that you’ll have more

All good info. 

But there’s no telling what it means to us. 

We have an appointment with a neurologist in Wednesday to check in after our massive seizure last week and hopefully discuss how we are going to test to rule out a parents’ worst nightmare. 

And then I think we wait. 

To see if it happens again. 

There have been some changes to Marrs. One of the most apparent is a “cheat sheet” in all of ds spaces outlining what to do should he have another seizure and a list of meds, allergies, how he’s not going to respond to strangers, and a “go bag” packed by the door….

And then there’s the watch with a second hand that both I and Ds peeps will wear to time any seizure that may happen moving forward. (Because even though all our phones have a stop watch it is difficult to time and call me and by God you better call me in case we have to roll).  

I haven’t worn a watch in almost 30 years. 

It’s a bigger adjustment than it would appear to the outside population but totally worth it if it saves me fumbling when d (or any not so short anymore Marrtian) needs me. 

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