Bennett Infantile Spasms 05-25-09

The opening section of one of Bennett's clusters of seizures, otherwise known as Infantile Spasms, as they are manifesting themselves as of today, Memorial Day, 2009. Wanted to get some uploadable video of his seizures as they are looking this week. We are at max dose of Topamax and Keppra, and it seems to, as evidenced in the video, be having little effect in controlling the seizures. ACTH already been tried and failed. Next step is consultation about possible surgical candidacy and also an appointment separate from that to discuss other medicines to try to stop this thing.

The intensity of the actual spasms on this cluster were more severe than they have been, though the amount of spasms within the cluster was smaller than average, he only had around 32 'seizures' total for this cluster.

For more information about Bennett and his condition, feel free to visit http://blogzilly.blogspot.com/.

Category:

Education

Tags:

• Infantile Spasms
• Epilepsy
• Seizures

[3121camille]

Your son is an absolutely beautiful boy and it broke my heart to watch him going through this. I truly wish him every good wish for the future. You're right he is lucky to be alive and I know that every thing he will be able to achieve will be a joyous miracle for you all. Best of wishes from Scotland x

[residentlilly]

@3121camille Thanks very much. Although with surgical removal of the tumor that we discovered was inside his head, the seizures stopped, he has never been the same boy again. Developmentally delayed, severely, and with a world of behavioral problems. But, he is still as cute as can be, and we work every day to try to understand how to communicate better with him.

[sexibunni619]

my son has infantile spasms and is taking zonicimide and I think it really helps, but he's on 3 pills per day, so...I'm hoping they bump him up to 4 because he's right on the edge of having them controlled

[residentlilly]

@sexibunni619 Don't hope they do. INSIST. Forgive my bluntness...but with IS, you absolutely just can't wait for any doctor to make a decision, most of them know less than most of us parents do about the condition. They just do not see it very often. Have them bump it if you want them to. If it is not working, do some research on the drug and its standard time frame on the net and then move on according to YOUR schedule, not your neurologist's schedule. You have to be the one in control.

[mightynaing]

Oh man .. such a cute baby, broke my heart to pieces ..

[residentlilly]

@mightynaing Well, be sure to check out my newer videos too. Yes it is heartbreaking and yes he is delayed and I talk about his journey in my blog called Blogzilly, but a brain tumor was causing these seizures, we found it, got it out and he hasn't had a seizure since. Will he struggle in life? Yes. But he's alive, he's happy and he's progressing, even if it is very slowly.

[hakunamakarla]

caused by the immunizations. plain and simple. we also went through this, they lied and named it this and that. but it happens when you get the shots. it does not go away, sorry but the pills you have them take, will slowly debilitate them more and more as the seizures complete its work. very sad.

[misswilline]

cute little boy!! i have a boy on my group with little kids with an handicap and he looks like him so much!! (sorry for my terrible English)

[3121camille]

Hi, thank you so much for replying to my message. I realise you are on a life journey with your beautiful son Bennett. I am so glad that the seizures have stopped as I know from first hand experience how damaging Infantile Spasms and subsequent epileptic seizures can be. I will follow your blog to see how Bennett is doing. Stay strong and forever positive x

[brynniekay]

I've watched this and a few of your other videos... Such a beautiful little boy! It's so sad to wach this :( God bless you and your family for staying so strong through all of this, I know it'd be much harder for me.