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Community Forum

Topic: Infantile Spasms & Tuberous Sclerosis

Created By: Catie-Marie | 06/2020 | 2 Comments

Hi everyone,

I am looking for some advice on this, as I have no idea if I am being too worried, or if I have good reason to be...

About 2 weeks ago my mother mentioned to me that my...

Created By: ETB | 02/2020 | 1 Comment

Hello,
My two month old had an abnormal EEG but the results didn't show signs of a seizure nor has he displayed any. Has anyone experienced this before and if so, what was the outcome...

Created By: Axay | 01/2020 | 1 Comment

My 1 mo baby boy started having seizures from 6th day of life. We went through every test possible and now awaiting genetics report.
His seizures are identified as tonic generalised seizures...

Created By: Nick359 | 08/2018 | 1 Comment

Not sure if I've already posted this. I tried to before but I don't think it worked, because I've only just registered. I have been using the epilepsy foundation seizure diary for a...

Created By: Sadaf_5af577e956a3c | 05/2018 | 2 Comments

HI, My husband and I are planning to settle in the US with our 1 1/2 year old son who has infantile spasms. We have previously had him treated at the NYU epilepsy center but are not sure about...

Created By: Zermlour | 01/2018 | 1 Comment

My son was diagnosed with infantile spasms at 4 months old, he was prescribed a steroid but it didn't seem to help so they switched him to vigabatrin; he is now 6 months, he still cannot...

Created By: MaddieB | 06/2017 | 2 Comments

My son is 2 and contracted encephalitis (Herpes Virus) when he was 9 months old in September 2015. He recovered well and seemed to regain his current skills which were sitting unaided, holding...

Created By: MayBabyParent | 07/2016 | 1 Comment

I know something is wrong with my daughter. She's 12 weeks old and has these spasms jerking movements. Multiple times a day, is there anyone I can text or email to get help and talk to who...

Created By: neverleavinsd | 02/2016 | 2 Comments

When my son Max was 4 months old he started having seizures. Hundreds every day. Infantile Spasms they were called. My husband and I were devastated! We had so many questions. We asked about his...

Created By: nicklsheridan74@gmail.com | 03/2015 | 1 Comment

My 6 month old daughter was diagnosed with Band heterotopia and has had multiple seizures since the diagnosis last week. They put her on Keppra but seizures increased. They increased the dose and...

Created By: Free Phoenix | 05/2014 | 0 Comments

My daughter was diagnosed with West Syndrome at 3 months in May 2013 and was given Sabril as the primary method of treatment.  We had tried the ACTH therapy but it was ineffective. In July 2013,...

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