Bennett's Infantile Spasms as of 6-27

We stopped the recording very fast, these were a bad set. His THIRD cluster of the day and it is only 1:19 PM as I write this. Something has changed in the last day or two. Could be the final wean off of Keppra, could be a mild fever he is running. But these are, while not the worst I have seen from him, in that ballpark of severity. Had about 46 of these when I taped, but as you can hear Jen in the BG, she wanted me to stop recording and just give him comfort. I agreed.

Category:

People & Blogs

Tags:

• Infantile Spasms
• Epilepsy
• Seizures

[mariahemmett]

I just wanted to tell you THANK YOU for writing your blog.... everything you describe as feeling and what you went through... i feel that exact same thing.. thank you for sharing your experiance with the world...

[residentlilly]

@mariahemmett No problem. He did have the surgery. It was for a brain tumor, so you were reading the correct blog if the blog was called blogzilly. Yesterday's blog was totally not about Bennett, it was about Football, and the one before that, on Monday, it was about Vaccines and their sometimes causality of Infantile Spasms. If you were reading that blog, you were reading the right one. You should have gone to the right and read the 'For First Time Visitors' section.

[mariahemmett]

i have so many questions for you... My daughter has been diagnosed with infantile spasms.. she started having them at 22 months... She is still having spasms although not as frequent or strong as they use to be. (she has had one round of ACTH.. Her EEGs showed hypsorithmia but the most recent one showed no hypsorithmia!! we are going in for another 24 hour EEG in jan. to confirm that the Hypsorithmia is gone.. my question to you is... did your son ever stop having siezures?

[residentlilly]

@mariahemmett

He did stop having seizures, but you'd have to check out his full story, and it is very long, too long to go over here. Go to google. Type in blogzilly.blogspot.com into the search field and that will lead you to my blog. That should tell you everything you need to know.

[lola2008lola]

Its so sad to watch ur beautiful baby have to go through this. How old is he? my son is 12 months and has spasms also except he does not sit up or walk or say any words. I pray for your baby.

[residentlilly]

He is 19 months old. His spasms started at 15 months.

[mariahemmett]

at first i was reading a blog about Austin not sure how I got to there... but i did find the blog about Bennett.. what a strong amazing boy you have.

[mariahemmett]

@mariahemmett OH MY GOSH I WAS READING THE WRONG BLOG!!! no wonder i was so confused.... ok i found the right blog ... sorry ..

[mariahemmett]

@residentlilly Im so glad that he is not having seizures.. but i have a question... I have been reading your blog.. it says that he is going in for surgery soon... why does he have to have surgery if the seizures have stopped? I am not trying to me nosey.. i am just wondering because i want to get as much info as possible about this so i can prepare myself for what could happen to my daughter...

[majaken4]

i just watched this and realize that it is nearly a year old, how is bennett doing? it just brings tears to my eyes. my granddaughter suffered from infantile spasms at four months of age. she was on the acth injection for seven months and is considered 'cured' for now. she is severely developmentally delayed and at nearly two years old cannot hold her head up. she is an angel of God and we love her. prayers to you and your family. lori