Lennox-gastaut

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

J

Joseph's Grandma

New
Messages
5
Reaction score
0
Points
0
Six years after finding out my (now) 11-year-old grandson has epilepsy, we were just told he has Lennox-gastaut syndrome. Personal research had provided me with this diagnosis, but actually hearing it from his neurologist was devastating. I guess I'm looking for a glimmer of hope, and ideas for providing him as much quality of life as possible -- other than simply loving him and being there both for him and his parents.
 
Hi Joseph's Grandma, welcome to CWE.

My heart goes out you and your grandson, and his parents as well. "Loving him and being there for his parents" is a wonderful thing and will go a long way. And looking for information and support on places like CWE is a good step too. You might want to check out "The Nursery" forum here -- it's where parents of children with epilepsy have posted.

What sort of treatment is Joseph on now? How well is it working? There are some approaches like the ketogenic diet, or neurofeedback that can help reduce the incidence of seizures. If Joseph is a candidate for those treatments, they might be worth exploring to help with his seizure control.

Best,
Nakamova
 
Thank you

First, Thank you for responding! My grandson is on lamictal, currently being "switched" to depakote (in hospital by IV bolus). Since the original diagnosis, he has been on nearly every drug available (Carbitrol to Banzel), and combinations thereof. Some seem to work for a few weeks, some don't. Some have caused severe behavioral side effects, others cause sleep deprivation. We tried the ketogenic diet, and while it did help with weight control (weight is another adverse side effect of many meds) it didn't help with the seizures. He has been hospitalized for status several times (Versed bolus has so far worked to bring him out of status). IVIg was beneficial for about 6 months. He seems to rapidly build up an immunity to any "successful" treatment. He has deteriorated / regressed over the past year, most rapidly over the past 4 months.
Thanks for your care and concern!
 
Have the doctors considered a VNS implant or surgery?
 
Has the VNS helped? I know some folks here have had mixed results.
 
At first, it seemed to help some. At this point, it's possibly preventing some seizures. Currently set at 15 secs. @ 30 sec. intervals.
 
It does sound as if you and the docs are considering all the treatments and approaches. One more thing -- there are some patients with Lennox-Gastaut whose symptoms are connected to or exacerbated by IIH. One CWE member recently found out that IIH may be responsible for at least some of the symptoms that her neurologists had attributed to temporal lobe epilepsy. Relieving the pressure seems to help with those symptoms.
 
Again, thank you for providing another research option. Bilateral nodular heterotopias were found initially (2nd CAT).
 
Hi JG, welcome to the forum. :hello:

Sorry to hear about your grandson's diagnosis. Have you contacted Christina at the LGS Foundation? They have put together some resources for the LGS patient community.
 
You must log in or register to reply here.
Back
Top Bottom