Infantile Spasms

buggywhips

My niece was diagnosed with infantile spasms today.  Does anyone have any experience with it?  Everything I have found with Dr. Google seems pretty grim.  She is getting a referral to a neurologist today, so we'll hopefully know more soon.

Sorry that this post is so scattered.  The hospital took a long time (like longer than a month) to get the EEG results back to the pediatrician, so we assumed everything was fine....no news is good news, you know?   That wasn't for a lack of trying on my sister or the Dr's offices' part, either.  The hospital actually never even sent the results-my sister had to pick them up and take them to the pediatrician herself. 

Anyways, if anyone has first hand experience they would be willing to share that would be great.  Thank you! 

Florak8

So the pediatrician diagnosed it and not a neurologist? A baby having seizures is not officially "infantile spasms". That is a frightening diagnosis to hear when you google it. My DS started having seizures at 3 months, but it is considered epilepsy. D

DougsBrideOct04

My daughter was diagnosed with infantile spasms on her first birthday.  I agree, google is terrifying with this diagnosis.  Luckily my daughter did not have any of the underlying genetic disorders that can go along with this.  She was ad

KevsLove

First off, hugs to you and your family...

Secondly, don't google, all it will do is scare the crap out of you.

Our DD was diagnosed with IS at 9 months and within a 2 weeks was put on Sabril (Vigabratin) which slowed down the spasms but

BUmama

My oldest child was diagnosed with infantile spasms when she was 7 months old. She tried a few meds and then her neuro, after another EEG, decided to put her in for a 24 hour video eeg because he no longer felt comfortable with the IS diagnosis.

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