Lennox Gastaut Syndrome???? - Epilepsy Message Board

Richael · 11-11-2004, 12:12 PM

My son was diagnosed with Lennox Gastaut Syndrome when he was 4 yrs old.
He was having up to 30 seizures a day at the time. We were very blessed that a combination of medications were finally able to control the seizures which is very rare for Lennox. The impact of the sydrome was learning disabilities, that for him, thankfully were mild. He has a 78 IQ. My son is now 21 and healthy, but we are finding that his behavioral and social difficulties are severly impacting his ability to achieve adult independance. Since this condition is rare to begin with, and people with the level of recovery my son has been blessed with is even more rare, I am finding it impossible to find anyone who is able to contribute from shared experiance. IF YOU ARE OUT THERE, I can't tell you how much it would mean to me to find you!

kayakmom · 11-12-2004, 07:50 AM

I am thrilled to see that your son was able to achieve control and has beat odds on LG...You are right, it is very rare for this to occur. I am sorry this also means it is harder to find support from others with the same experience....

Is there a group near you who works with developemental disabilities to work on independent living skills and job placements? This might be a way to help him learn to function, even in limited amounts?

Hang in there...

Richael · 11-16-2004, 01:21 PM

Thank you so much for responding!!!!! My son is currently working with Vocation Rehabilitation services receiving job coaching. I had requested assistance from a neropych, and they were very willing to approve testing and future visits. He has his first appointment 12/1 so that is good news. I know how blessed I am that he is well. But I find he is a mystery, I don't understand why he is not able to achieve independance, and he is at a very crucial age where I feel that if I am not unable to unravel the mystery he will be stuck in a cycle of dependance and miss the fullness of life he is capable of. I know it must sound greedy, considering there are so many in a more difficult situation than myself. And yet my heart breaks for him, and I sometimes feel as though I am the blame for his situation because I have been so over protective of him his entire life!
Did you have an experiance with LG?

Thank you for listening!

kayakmom · 11-16-2004, 03:47 PM

Never discount what you are going through because others may be "worse".....While it is true that others have more seizures, harsher circumstances etc, your trials are just as real.

I certainly understand your feelings of needing to get him independent soon or fail to do so. I have those concerns for my son, who does not have LG. He has learning disabilities as well as being very bright. He does have challenges sometimes in understanding how to interact and in processing. His mind is on its own beat, for sure. While this is not all bad, it does present challenges in seeing him on his own. Time will tell.

I hope the neuropsych appointment goes well on the 1st! How is he doing with the Voc Rehab? Is this helping any? I have thought of a type of internship for my son. He can be a good worker if someone will take time in explaining, and re explaining things.

I only know what I have read about LG, but have many friends who have kids in different syndromes and spectrums...

Best wishes!