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Thread: infantile spasms

  1. #1
    Distinguished Community Member
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    Default infantile spasms

    I have a friend who has a 6month old boy who was born with Down syndrome. He is presently in the hospital and diagnosed with infantile spasms. they are suggesting ACTH steriod shots. Of course she has been online researching and is frightened by the side effects of this drug. I told her I'd come here to the "experts" for any information I could get on this drug and infantile spasms. Thank you in advance for anything you can offer.
    Mary Grace

  2. #2

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    Hi Mary grace, At least you and I have found our way back. All of us on this forum are experts about our strokes and how we got better but I for one, would never presume to be an expert over a physician--and I'm a nurse with 30 years experience. Your friend should ask the physician questions she has as well as concerns. Corticosteroids are scary drugs but ultimately she has to trust the doc. I'm not clear on what these spasms are. I do know that steroids are the standard of care for swelling of the brain. That is really all I can tell you without more info. Kathy

  3. #3
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    Tyler had two rounds of ACTH as an infant. Not necessarily for infantile spasms, though it was thought he might be having them. It was more to try and calm his constant tonic seizures. It didn't work for him and he developed an allergy to the med. It is a harsh drug and having to administer it wasn't fun either. It is very thick in consistency and is painful, and being a steriod, it lowers the child's immunity. However, I have spoken to many families dealing with infantile spasms (West syndrome) that had great success using ACTH. For some, it was their miracle drug, and it brought back their babies to them.
    I know of a family now using it for their 11 year old daughter and it has worked well for her too. We were willing to try anything to try and stop Tyler's
    hellish seizures and don't regret trying ACTH. Just wish it would have worked.
    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."

  4. #4

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    Thanks for that insight because my only experience with ACTH has been as a remedy if a metabolic problem is suspected rather than neurological. That's actually why I signed on this evening to tell Mary Grace but I'm sure your first hand experience gives her more info.

  5. #5
    Distinguished Community Member
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    Hi Mary Grace.

    I agree with what has been suggested and that is that you follow the doctor's advice.

    With these drugs, the side effects of ACTH can be puffiness of the face and there are other side efffects also.

    I understand that the drug can be beneficial.

    Grant who is now 23 never had ACTH, so we can't give any personal observations.

    Best wishes to you and hopefully your friends son will improve.

    Best wishes and seeya,

    Paul, Alison and Grant the champ.
    Grant's story in pictures and music. A must see :)
    http://www.youtube.com/watch?v=fiZGlwj6VCQ
    Seeya there :)

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