Lennox-Gastaut syndrome (LGS) diagnosis

Hello @davesmo04,

Welcome to Connect. I'm sorry to hear about your son, and so glad you've joined this group. Here's some information about Lennox-Gastaut syndrome (LGS) from the National Organization for Rare Disorders (NORD): https://rarediseases.org/rare-diseases/lennox-gastaut-syndrome/
And, on this Mayo Clinic webpage, you can also read about a past clinical trial of cannabidiol (CBD) treatment for children with LGS: http://www.mayoclinic.org/medical-professionals/clinical-updates/neurosciences/clinical-trials-of-cannabidiol-for-epilepsy

In the meantime, I’d like to introduce you to other parents who have children living with seizures. Please meet@blath2000 @ketomom @hermsenk @inkdfrog @krd94 @punkin312 @sarahv @erinorb @jruza @sbruce @mikearons50 @grandma and @patrassi. You may also be interested in reading more about them in these discussions:

– https://connect.mayoclinic.org/webinar/askthemayomom-about-pediatric-epilepsy-surgery/
– https://connect.mayoclinic.org/newsfeed-post/webinar-pediatric-epilepsy/
– https://connect.mayoclinic.org/webinar/webinar-adult-epilepsy-common-clinical-issues-and-new-therapies/

@davesmo04, may I ask what led to this diagnosis? Has your son started any medication, or has the doctor suggested making any changes to his diet?

RN with 14 yr old pt. Wednesday 4 seizures in 10’ No meds per mom. 15’ later totally unresponsive, took 5’ to arrouse. Happened again yesterday. Comments please

Hi Kathy Ann,
Mayo Clinic Connect is an online community where people can share experiences, give and get support. Keep in mind that we do not provide medical consultation on Connect.
That being said, I moved your message to this existing discussion about Lennox-Gastaut syndrome (LGS) where you can meet @davesmo04 whose 12-year old has also been diagnosed with LGS.

Not looking for diagnosis at all, just wondered if this has happened to others

Why would a 44 year old man's diagnosis change to LGS? From regular epilepsy???

You haven’t given many details to go on but one reason may be all LGS symptoms weren’t present at the initial evaluation of Epilepsy. LGS usually has different types of seizures which require various types of medication. There are approximately 40 types of seizures and syndromes thereby making it a complex condition to both diagnose and treat. It would be helpful if you could provide more specific details of the condition.

Brain surgery in 2012 Resection infectious in bone flap found and removed most of the infection in 2015. A year after infection was removed eye pain headaches and increased seizures occurred. Had an eeg found that no seizure activity wasn't shown till Convulsions started. What triggered the break through seizure was the light flashing.

Having issues with onfi weigh gain 15 pounds inventor mussel spasms noise startle me and puffy lips. What do I do? Called dr. Two days ago still haven't heard back yet

My name is Pam and my 40-year-old son has Lennoix-Gesault Syndrome, diagnosed ten years ago on the basis of his "disorganized" EEG. The seizures started just before he turned 3, on Memorial Day. We were told he'd be fine because he was completely normal developmentally and physically, and his EEG was normal. But that isn't the way things turned out. He slowly lost all his abilities and now he can't walk, talk, feed himself, stand without much help, or toilet. He lives at home and attends a wonderful day program. He still has a few seizures every week, when he is asleep. He started on medical marijuana about 18 months ago. The seizures hav lessened slightly and he can bear weight with assistance (he couldn't before). His other meds are Dilantin and Celontin. He's tried all the newer meds as they appeared, but either they didn't help or, with Felbamate, he had continuous diarrhea as a side-effect. His neurologist says he is very "medication-sensitive." He has been on the ketogenic diet and many other diets (Macrobiotic, gluten-free, dairy-free, etc.) We have also tried just about every alternative treatment over the years. I wonder if anyone else in this discussion group is in our situation?

Hi, @pamelastewart5 - I have moved your post here to this discussion on Lennox-Gastaut syndrome so that you can connect with others familiar with this type of epilepsy. I'm so sorry to hear you were told your son would be fine and that is not the way things turned out. I can imagine it would be very hard to see your son slowly lose so many abilities.

I am glad to hear your son has a wonderful day program to attend. It does sound like you have been through a lot of treatments, which is challenging. I'm hoping some of the other members in this discussion like @briandungan @kathyann @davesmo04 will have some thoughts for you on whether they may have experienced some of the same things in their own or a loved one's journey with Lennox-Gastaut syndrome. @jakedduck1 @hermsenk and @patrassi may also have some thoughts for you.

Have the phenytoin (Dilantin) and methsuximide (Celontin) been helpful at all? How has your son tolerated them?