Infantile spasm

Kelly stared having an infantile spasm AKA seizure while her OT was here and she suggested i tape it so Gracie got the camera and we did. This is one of her worst ones she would have these "episodes" multiple times a day, each "flinch" is a seizure she would have hundreds of these"flinches" in a day before we started medicine. It breaks my heart so I'm hoping this will help others as well as let others know that the doctors didn't listen to us even thought we had told them time and time again EXACTLY what she was doing, but until they saw the video they did nothing, she was put on medication that afternoon and we have tried many in these last six months.
so whether it's seizures or anything that you think the Dr. should be concerned about take a video and SHOW them, they soon learn that the parents really do know best.

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[gillian927]

Did the doctors ever diagnose this spasm as a seizure? Poor sweetheart. That seems scary. I hope she is okay now :)

[jegspillerpiano]

@JWRIGHT5638 Get it treated, VERY quickly. My son had seizures, not quite as bad as this video, but West Syndrome is ALWAYS serious. There's almost always an underlaying cause. My son has Downs, which can trigger it.

[nikkisanchez25]

poor baby :'(

[coyote70k]

Hope she gets better My daughter has IS also (((hugs)))

[afdanakita]

:(

[DudeLebowski2011]

makes me cry, cant watch. Hope all gets better, god bless



[opedza30]

I have a son who has IS too, he started like this but is doing better on Vigabatrin, can you please give an update on this precious angel,

[Oakleaf700]

How absolutely scary..poor you....the gasping for breath, the absent look in her eyes...hope she gets over these. good luck.

[misswilline]

poor kid!!

[lawofjude]

This is heartbreaking.....doctors need to trust more in the parents, we are the ones who are with our children all the time, we know when something just doesn't look right or feel right. How old is she now? Has she found any seizure relief? Do they know what caused her seizured...like Tuberous Sclerosis, a tumor, or some brain abnormality?