Possible diagnosis of LGS in 2 yr old male

Posted by caitieg86 @caitieg86, 5 days ago

Hello. I’m new here. From Canada. I guess I’m just looking for support,
experiences and guidance as this is all new to us. Yesterday my son (2yr old male) had a possible diagnosis of LGS (based off his most recent EEG, resistance to medications (Valporic Acid and Keppra) and types of seizures) the MRI and genetic testing will give a definitive answer we hope. He was previously diagnosed with Focal Epilepsy. My husband and I are very scared and sad. It’s a lot of information to digest. His seizures began in October. It’s all been very sudden and fast. I’ve barely had time to comprehend any of it. We begin to taper off Keppra today and begin Clobazam while continuing VPA. Otherwise he’s still continuing to hit milestones and we haven’t seen any regression yet. He’s still very happy, very active and otherwise healthy.
Thanks for reading.

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

Chris Gautier OR Santosha | @santosha | 4 days ago

Hi @caitieg86
Be very welcome!
I am very sorry to hear your story.
Have you heard of the keto diet? It is the only treatment that can cure a child from epilepsy (I do not know if all types of epilepsy). There is a movie called "First Do No Harm" with Meryl Streep on the true story of the Charlie Foundation. It is worthwhile seeing this movie (available for free on YouTube - https://www.youtube.com/watch?v=tHZnuhqVTgY&t=3644s) and also looking upon the Charlie Foundation.

The Charlie Foundation for Ketogenic Therapies was established in 1994 by Jim Abrahams, a Hollywood producer, after his son Charlie developed severe epilepsy that was difficult to control. The foundation was created to promote the use of ketogenic diets as a treatment for epilepsy and other neurological disorders. The ketogenic diet, which is high in fats and low in carbohydrates, has been shown to help manage seizures in some individuals, including children with epilepsy
https://charliefoundation.org/
All the best to your son!
Chris (@santosha)