Lennox-Gastaut syndrome
Every day is different. Every moment is different. And, the gift that comes with that is that he has forced us to focus in on every single moment. Every little thing is a celebration - Karen, mother of adult son Dan
image by: Emma Faisal
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7 Things I Wish I Knew After My Child's Lennox-Gastaut Syndrome Diagnosis
As the mother of a child with Lennox-Gastaut syndrome (LGS), there are many things I wish I had known after the diagnosis. I hope this list will help other parents who are starting out on their LGS journey alongside their children.
1. You are not alone. When my daughter Isabela was diagnosed with LGS, it was very overwhelming and scary. It’s not everyday your world is shattered into pieces when you learn your loved one has a condition with no cure. Finding others going through this can be a big help! When I found the LGS Foundation, I felt like a part of a family– a family that was able to understand my struggles. Knowing you’re not alone helps cushion the roller coaster…
Resources
CBD Reduces Seizures Associated With Rare Form Of Epilepsy
So frustrating for physicians and parents alike, these children and adults are in desperate need of a therapy to help improve their lives. However, one potential approach using cannabidiol (CBD), a non-THC and thus non-hallucinogenic form of cannabis--in combination with standard AED--is showing promise.
Minute by Minute
Minute by Minute is intended to raise awareness of Lennox-Gastaut syndrome, a rare and severe form of epilepsy that accounts for as few as 1%-4% of cases of childhood epilepsy. LGS is one of the most complex epileptic disorders to treat and manage. The video features two families living with LGS and offers perspectives from physician experts and patient advocates.
Some Fear Changes to State Laws as US Weighs Pot Medicine
Some American parents who for years have used cannabis to treat severe forms of epilepsy in their children are feeling more cautious than celebratory as U.S. regulators near a decision on whether to approve the first drug derived from the marijuana plant.
Expert Opinion on the Management of Lennox–Gastaut Syndrome: Treatment Algorithms and Practical Considerations
Lennox–Gastaut syndrome is a complex epileptic and developmental encephalopathy, with an extremely poor prognosis for long-term seizure control and cognitive outcome. Even with current and new pharmacological agents, seizure freedom is highly unlikely to be achieved.
Accepting the ‘New Norm’ for My Child With a Life-Limiting Illness
The past few months I have had to once again readjust my idea of what my son’s “norm” is. The last time such a big change in his health occurred was about three years ago when he began having more intense seizures. Not only did these seizures last longer, he also stopping breathing during them.
Expert Panel Says FDA Should Approve the First Marijuana-Based Drug
The medication, called Epidiolex, is used to treat two severe forms of epilepsy in children. The 13-member panel voted unanimously in favor of its approval.
7 Things I Wish I Knew After My Child's Lennox-Gastaut Syndrome Diagnosis
As the mother of a child with Lennox-Gastaut syndrome (LGS), there are many things I wish I had known after the diagnosis. I hope this list will help other parents who are starting out on their LGS journey alongside their children.
Lennox-Gastaut syndrome: A Guide for Caregivers
The cause of LGS is unknown in about 30% of people diagnosed with LGS—that's about 1 out of 3 diagnosed cases. You may have heard of these cases being referred to as "idiopathic" or "cryptogenic." However, in the remaining 70% of cases, LGS has an identified cause.
LGS Foundation
The LGS Foundation's mission is to improve the lives of individuals affected by Lennox-Gastaut Syndrome through research, family support programs, and education.
LGS Together
LGS Together connects the epilepsy community, particularly those affected by Lennox-Gastaut Syndrome (LGS).
Living with LGS
This Eisai community provides you with practical and educational information to help you better care for your loved one with Lennox-Gastaut syndrome.
NINDS
Treatment for Lennox-Gastaut syndrome includes clobazam and anti-epileptic medications such as valproate, lamotrigine, felbamate, or topiramate. There is usually no single antiepileptic medication that will control seizures. Children who improve initially may later show tolerance to a drug or have uncontrollable seizures.
NORD
There is no consensus in the medical literature on the exact definition of Lennox-Gastaut syndrome. Generally, three findings are necessary for the diagnosis: multiple generalized seizure types; a slow spike-and-wave pattern (less than 2.5 Hz) on EEG; and cognitive dysfunction.
Patient
The Lennox-Gastaut syndrome is characterised by multiple types of epileptic seizures, a characteristic electroencephalogram (EEG) with generalised slow spike-and-wave discharges, psychomotor delay and behavioural disorders. The onset is usually before the age of 8, with a peak between the ages of 3 and 5 years. Late cases occurring in adolescence and early adulthood have rarely been reported.
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