Member Comments are provided by individuals and reflect their personal opinions only. Under NO circumstances should you act on any advice or opinion posted in this forum. ALWAYS check with your personal physician before taking any action regarding your health! MedHelp International and our partners, sponsors and affiliates have no obligation to monitor any comments posted on this site, or the content and/or accuracy of such exchanges. MedHelp International does not endorse the views of any user.
Neurology (Expert Forum)
Can we stop LGS from developing?
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury
Can we stop LGS from developing?
by jasonsmom, Apr 18, 2004 12:00AM
My son Jason had tonic/clonic seizures on day 2 of life (seizures controlled with Phenobarb; no known cause found), a large bilateral bleed at 5 weeks, survived with 80% of brain damaged, developed hydrocephalus (resolved with Third Ventriculostomy), develop Infantile Spasms (controlled with Vigabatrin), developed MISF (controlled with Topamax). He is currently 14.5 months old, has severe GDD, cannot sit, talk, hold toys, has complete CVI from the bleed or the IS or both.
He currently get PT three times a week, craniosacral therapy, and lots of love and attention. He is happy and content, sleeps well, and eats well (battling a bit with appetite suppression from Topamax but he has a g-tube so we use that to top up if he isn't drinking enough).
His prognosis is poor, especially in developing Lennox-Gastaut. Are we doing everything we can to prevent this? Does the fact that he responds so well to the AEDs mean he may be more likely not to develop LGS? Does stimulating the brain via therapy help to heal it and keep it busy so seizures are reduced?
Any help you can give us would be appreciated, thanks.
He currently get PT three times a week, craniosacral therapy, and lots of love and attention. He is happy and content, sleeps well, and eats well (battling a bit with appetite suppression from Topamax but he has a g-tube so we use that to top up if he isn't drinking enough).
His prognosis is poor, especially in developing Lennox-Gastaut. Are we doing everything we can to prevent this? Does the fact that he responds so well to the AEDs mean he may be more likely not to develop LGS? Does stimulating the brain via therapy help to heal it and keep it busy so seizures are reduced?
Any help you can give us would be appreciated, thanks.
Doctor's Answer
by CCF-Neuro-M.D.-CS, Apr 20, 2004 12:00AM
Lennox-Gestaut syndrome describes a group of children who have similar development, seizures, and EEG changes. However, what most doctors do not like about the term is that it does not describe what the underlying problem is. It seems to me that you are doing all of the appropriate things to maximize your sons future. One of the most beneficial things you can do is provide a nuturing, loving and stimulating environment. This does not help to heal the areas which have been injured, but encourages or attempts to develop the remaining areas to their maximum.
The therapy will have no impact on his seizures. If he is having frequent seizures on medication, I would recommend having a second opinion at a large academic pediatric epilepsy program. He should be evaluated for epilepsy surgery, which in certain cases, can have a dramatic impact on a childs life. We have 4 excellent and well respected pediatric epileptologists in our department who perform consults like this weekly. Good luck.
The therapy will have no impact on his seizures. If he is having frequent seizures on medication, I would recommend having a second opinion at a large academic pediatric epilepsy program. He should be evaluated for epilepsy surgery, which in certain cases, can have a dramatic impact on a childs life. We have 4 excellent and well respected pediatric epileptologists in our department who perform consults like this weekly. Good luck.
He is on 50mg Topamax and we are weaning from Vigabatrin - went from 1500mg to 600mg then saw some myoclonics and unexplained startles so stopped weaning for a bit. Now were going slower - 25mg a week vs. 250mg a week reduction.
I am desperate to stop him from getting LGS - he has developed so little and for him to regress seems like an impossibility. He has CP and is a spastic quad, but he has started to show some head/trunk control, tolerates tummy time and even looks like he is trying to crawl - moves boths legs, lifts bum off floor, occaisionally lifes head, can clear his nose.
I'm rambling, sorry. Thanks for any help ...
He did a 360 on his tummy today, and almost rolled over yesterday, so he is progressing.
Thanks again,
Sharon, Jason's mom.