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infantile spasms

  • 05-12-2015 7:14pm
    #1
    73trix
    Registered Users, Registered Users 2 Posts: 1,190 ✭✭✭


    My little 14 month old has just been diagnosed. Anyone here have experience of same where baby had had good outcomes /grown out of it? Thanks.


Comments

  • #2
    rockwell
    Registered Users, Registered Users 2 Posts: 103 ✭✭rockwell


    Hi 73trix, yes my son was diagnosed at 9 months with infantile spasms as part of a wider condition know as Tuberous Sclerosis. He was put on medication to control the spasms which worked extremely well and one year later after having no spasms he was taken off it. He is now a very happy 6 yr old with no issues. So there are good news stories out there. i think early intervention is key so hopefully you have a good medical team looking after him. Any further questions drop me a note.


  • #3
    73trix
    Registered Users, Registered Users 2 Posts: 1,190 ✭✭✭73trix


    rockwell wrote: »
    Hi 73trix, yes my son was diagnosed at 9 months with infantile spasms as part of a wider condition know as Tuberous Sclerosis. He was put on medication to control the spasms which worked extremely well and one year later after having no spasms he was taken off it. He is now a very happy 6 yr old with no issues. So there are good news stories out there. i think early intervention is key so hopefully you have a good medical team looking after him. Any further questions drop me a note.

    Hi. we are now a year down the road and my son was put on steroids and his spasms stopped within weeks and never returned, thank goodness. he was discharged from temple st in recent weeks. It's so good to hear your son has no issues. My guy has devel delay but is making strides all the time, speech is his biggest issue. I was so worried about cognitive problems. Hoping he will be one who has "normal" cognitive development in time.


  • #4
    Kurooi
    Registered Users, Registered Users 2 Posts: 746 ✭✭✭Kurooi


    Can I revive the thread ? I thought I might actually get valuable feedback here.

    My son is 11 mo. I have today concluded that his "ticks" are indeed most likely infantile spasms, at first I wrote them off as straining but then reading about this illness I see the the relative schedule and clusters of the same facial expression are not just him playing faces. I'm seeing a GP and pediatrician (2 separate for now) immediately but any tips or perhaps ideas of what I should be doing in meantime? I've decided to try record him as much as possible get a few cases on video for the doctors but so far not great luck they're normally short , 2-3 few seconds each by time I pull a camera out he's back to normal.



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