Support Registry Update

Truth is stranger than fiction

In support of
Lewis/Laczko family
View Support Registry

The short story: Leo did not have neurosurgery today. We will need to make a third (and, god willing, final) trip to LA.

The long story: We've been here since Sunday, and it's hard to share that it isn't going according to plan. With the results of Leo's MRI and PET scan, the Neurology team feels confident he does not have hemimegalencephaly (HME), the diagnosis that's directed our efforts since last summer.

Ten months learning everything possible about HME. Now we set that to the side and quickly learn everything possible about this new diagnosis: polymicrogyria.

The goal now is to capture multiple seizures on EEG to learn where exactly they're originating, which informs the treatment plan. Leo — our sweet boy, who is absolutely bored out of his mind — has been hooked up to the EEG since Monday. They're weaning down his meds to try to provoke a seizure; he's had one so far. We need at least two more. Having been fearful of seizures for 10 months, we're now hoping for them.

Browse Current Support Options

View Options

Comments

Lanlew0225

Our hearts, love, and prayers are with you all..G-M
  • over 1 year ago

Annepilgrim2

So crazy! Hoping that you get the answers you need sooner than later. We are thinking of you all -keep posting updates. They are appreciated! XOXO
  • over 1 year ago

Kmgcats234

Prayers, hugs, and much love I’m sending your way for sweet Leo and ALL his family.
  • over 1 year ago