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Thread: infantile spasms

  1. #1

    Default infantile spasms

    Is there anyone out there who has dealt with IS?

  2. #2
    Distinguished Community Member
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    Tyler has Ohtahara Syndrome which has infantile spasms as a symptom for many of our children. You may want to look for a board with West Syndrome (another word for Infantile Spasms). There are several on Yahoo and also on Facebook.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

  3. #3
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((memaw))))))

    Welcome to Child Neurology!

    I don't have any experience with infantile spasms, so I'm not of much help to you there. But I can certainly lend support in other regards, so please feel free to share anything with us.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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