Special Needs

Infantile spasms

I'm asking for a friend who has an 8 month old with Down Syndrome who was just dx'd with infantile spasms.... I think West Syndrome b/c they are going to put her on Sabirl. Does anyone have experience with this? If so, can you email me at [email protected] so I can put you in touch with her? She has some questions about the side effects this med can have on vision. Thanks!

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Re: Infantile spasms

  • Sarah has two daughters who have infantile spasms.  I'll facebook her and tell her to check.
  • I treat someone on that med.  The family just has to get eeg's on the eyes to get a baseline and it's monitored every few months.  It's been effective for this child.  I don't want to get too specific for Hippa reasons, and I'm definately no expert on Sabril.  I hope she finds the info she's looking for.  Has she tried the epilepsy foundation boards for someone going through similiar.  They are a good resource.
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  • My son was Dx w/ IS at 2 months old (seizures started at 1mo).  He was put on Sabril a couple of weeks after his diagnosis.  It worked in controlling his IS for almost 3 months before he bagan having breakthrough seizures.  Despite increasing dosages we never regained control, and we took him completely off of Sabril when he turned 1year old.  He is still having IS to this day.  As for the side effects, he has seen an opthamologist every 6 months since his diagnosis (TSC) and we have never seen any changes in his vision. 

    If she has any more questions you can put her in touch with me...tinablatchford at hotmail dot com.

    imageimageimageimageimage 9/07 m/c baby boy @ 18wks, 4/09 m/c @ 4.5wks
  • Yep.  Both of my girls have/had Infantile Spasms (aka West Syndrome). 

    She can check out my blog--if she's brave enough-- or email me anytime [email protected]

    Ayva, my middle daughter was on Sabril for 6 months. 

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