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Raising Special Needs Kids Raising Special Needs Kids

infantile spasms

Posted by on Oct. 4, 2012 at 5:59 PM
  • 6 Replies

Anyone have a child with this?  My friend's child was just diagnosed with this and I'm looking for some guidance on how to offer support to her. 

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by on Oct. 4, 2012 at 5:59 PM
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Replies (1-6):
darbyakeep45
by Darby on Oct. 5, 2012 at 6:48 AM

I have no experience with this but know that others do:)  Hugs mama!

CameronsMommy23
by on Oct. 5, 2012 at 8:55 AM
My son had them when he was about 6 months old. He did ACTH injections for 8 wks and that stopped them. Another mom here, also named Amber like me coincidently, has a son with infantile spasms as well.
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Elyssa414
by Elyssa on Oct. 5, 2012 at 8:58 AM
My son had infantile spasms. He did two rounds of ACTH, many anti-epileptic drugs, VNS implant, ketogenic diet and brain surgeries.

You're welcome to send her to his website
www.caringbridge.org/visit/elijah414

It has my contact info on there!
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teach2358
by on Oct. 6, 2012 at 8:58 AM

In my experience,knowing my friends were there when I needed to vent was comforting.Its a learning process and we had a week or 2 when she wasn't feeling good due to a build-up of ACTH in her system.Helping out with the other children or around the house was also appreciated.Hugs to you and your friend!!!

mimi0884
by on Oct. 8, 2012 at 2:46 PM

Thank you guys!  I was able to visit them this weekend.  Yesterday was day 5 of ACTH and they haven't seen any changes. :(

natesmom1228
by on Oct. 9, 2012 at 9:12 AM

I am sorry I don't know anything about it.

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