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http://www.upgaze.org/

There is video there.. they thought the child had IS. This is not exactly what Sam does.. but close.

Our other friend another child with DS... does yet another thing. Hers too started at after 10 months. They think its upgaze also.

Steph

Re: [DownSyndromeInfoExchange] Ruby?

Hi Caroline,

Thank you for thinking of us. Sophia's pediatrician wasn't worried with what she saw. I have been "watching" her myself and am feeling less worried. I've read a lot about infantile spasms and I really feel she does not fit the description. She seems to be doing this when she is upset and so I feel at this point it's something she's doing on purpose. I will continue to watch her and if anything else makes me nervous I will be taking her to see a neurologist. I think I'm hypersensitive due to the heart problems we've dealt with up to this point.

Thank you to everyone for all of the feedback I received.

Ruby and Sophia 9 mos. (Ds)

Ruby,Any news on your daughter's strange head movements? I have been thinking about her and wondering if you found any answers? Praying all is well.Caroline=

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