Can we stop LGS from developing?

[jasonsmom]

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.

[CCF-Neuro-M.D.-CS]

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.

[jasonsmom]

More about Jason - I guess what I really want to know is are there other forms of therapy and supplements that may help him and/or reduce how much AED he takes. There are so many things out there that people say help their children - like B6, magnesium, calcium (how much, he weighs 11kg), homeopathic "smart drugs" (which scare me because aren't we supposed to be calming his brain, not stimulating it), brushing therapy, breathing therapy etc. etc.

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 ...

[jasonsmom]

Thanks for your reply. Jason is a patient at Toronto's Hospital for Sick Children, and I do believe they are doing what they need to do and that it is a good place, just was looking for some reassurance. His visible seizures are controlled, and he has an EEG May 13th so we'll see what is happening subclinically. I believe the subclinical seizures are affecting his sight, so we'll have to pursue other options (meds) if they aren't resolving. His lack of sight is a big conributor to his slow development I believe.

He did a 360 on his tummy today, and almost rolled over yesterday, so he is progressing.

Thanks again,
Sharon, Jason's mom.

[kwag]

Hi.  I am sorry to hear that your son has had to go through so mych in his little life.  I now say a prayer for you and your family that you be given the strength and the knowledge to do what God would have you to do.  I pray that God gives you peace that everything will be okay because He is God and ALL things are possible for Him.  When I read your questions about the alternative ways of treatment I was encouraged.  God made us all with the ability to heal.  Your body and mine and your sons are fearfully and wonderfully made.  I believe in using nutrients to help ourselves heal.  Please continue to look further into it.  Check out www.mercola.com and www.gardenoflifeusa.com.  I also have a son who has endured and incredible load and he is such a blessing.  We have turned to nutrition and Garden of Life products and with lots of prayer, our little boy is progressing.  Somedays he looks lots better.  I thank God in heaven for that.  Keep on believing.  Sounds like you're on the right track.  God Bless.