My daughter, 2 years old, was diagnosed with infantil spasms and a seizure disorder

Jessee - posted on 09/13/2011

2 different Hospital Visits and serveral different people have said that it looked like our little guy was having Seizures... We have also noticed this over his 2 years of life.. he has had 2 EEG's but Normal.. we are frustrated.. is it possible to have seizures and it not show on the EEG? Thx, Jessee

Keri - posted on 01/22/2009

Rebecca was dx with infantile spasms when she was 4 months old.  No medication has worked on her so far.  But right now she is not having the same type of seizures anymore.  Her seizures have changed over the years (she is 3 1/2).   

There is another great infantile spasms board (specific to IS).  I've been a member and moderator there for several years. 

http://www.infantilespasms.com/forum/ind...

Right now we are trying to figure out the next step in Rebecca's epilepsy treatment.

Niki - posted on 11/15/2008

Hello Moms!

Just when you think you're alone with a child with TS and/or infantile spasms! Wow, how great is this to find you!!!



My son, Wyatt, was diagnosed at 5 mnths old. He is now 7 mnths, and at 5.5 mnths we noticed that there were other 'movements' that weren't typical of his original seizures.

We had him on Phenobarbital that took care of his initial seizures, but it did not work for his infantile spasms. We hesitantly tried Sabril (Vigabatrin), with no success.

We just got home from the hospital two weeks ago after trying the ACTH treatment.



No seizures as of yet but, I'm sure you can relate, we're holding our breath!

I'm noticing some infantile spasms type movements, but just praying I'm wrong.



Wyatt has tubers in his brain (approx 8), and two nodules in his right eye.



I would love to talk about this with anyone who needs an ear (or eye, lol) to talk to!

Take care!!!

Anita - posted on 11/13/2008

My daughter was put on a drug called Vigabatrin at 8 weeks of age. It's a drug that is not FDA-approved so it has to be ordered from Canada. And there's only one pharmacy in the country--in NYC--that has it. But it worked for our daughter. She's now off of it and so far (keeping fingers crossed) her spasms have not come back. She's on Keppra & Topamax for her partial seizures. Do your kids have developmental delays? If so, how are you both dealing?

Joann--my daughter is going to be having a right temporal resection. She went through various tests and they found that her seizures were originating from the right temporal lobe. There are tumors in this area which they assume are causing the seizures, so the hope is that by removing them, she'll be rendered seizure-free. We'll see.

Joann - posted on 11/13/2008

My daughter was on ACTH last year, it appeared to work but seizures came back within weeks. We are going to try Lamotrigine in combo with her current meds to see if this works. Ketogenic diet is the next step and I seem really nervous about this! I am raising 3 children on my own and I still work 40 hrs a week! Thanks for sharing Kerry!

Kerry - posted on 11/12/2008

My daughter had infantile spasms too but we did a steroid treatment (daily injections) and it did resolve those. She still seizes about 5 times a day even on the ketogenic diet and with a vagus nerve stimulator but they are getting better....

Joann - posted on 11/12/2008

Hi Anita,
My daughter was diagnosed with infantile spasms and intractable epilepsy. She started seizing at 6 weeks of age. She is now almost 28 months. What is your daughter having surgery on? Love to chat. My thoughts go out to you and your family. Please keep in touch!

Anita - posted on 11/12/2008

hi joann--

what seizure disorder was your daughter diagnosed with? my daughter was diagnosed with tuberous sclerosis at the age of 8 weeks. she started having infantile spasms at 5 weeks of age. she's now 16 months and is going to have surgery next week.

let me know if you'd like to chat---from one mom to another.