i have a 6month old daughter who started having the same spasm like yours. i am desperate for some answers, her doc has given her topomax and for a week she was spasm free but then it started again. so the doc wants to just increase the med and increase it some more. however, each time i increase the med it seems like she is getting worse. from having 5 or 6 wave per episode to 17-22 waves per episode. now the doc wants her to take vigabatrin. should we go get a second opinion?
Just wanted to advise everyone about Emily's status. She started the ACTH on April 27th. As of today (May 10th), she has gone a full week without spasms! Her neurologist says that if she goes another week without showing any signs of spasms, she'll gradually be weaned off the medication. Emily's doing great, sitting up well, smiling and watching everything going on around her, vocalizing and just generally looking healthy and happy. Thanks to everyone for your support and well wishes.
@mudslinger90010@gregfl hey hi my daughter also have same thing infantile spasam and we looking what we should best so she get of out this. our dr gave topiramate for 2 week but it seem it is not helping her so if you can help me out my email is
To the parents: Just wanted to let you know that my daughter experienced the same "startle reflex" IS & was also idiopathic. She was on ACTH for six weeks (she was dx in January) & it normalized her brainwaves, so there is hope! We still watch her like a hawk & our playing the catch up game with her development, but all in all she is doing well (it's always in the back of our minds though). Yahoo has a great IS support group to bounce questions around is you need. I'm tkhertlein on the site.
Hey parents. This is Gregfl...the guy you contacted when you first went on youtube seeking answers. My and my wife's thoughts are with you and your beautiful daughter. My baby came thru this scary disorder and is doing well at almost two years old ...so have lots of hope and let me know if I can help!
@gregfl hey hi my daughter also have same thing infantile spasam and we looking what we should best so she get of out this. our dr gave topiramate for 2 week but it seem it is not helping her so if you can help me out my email is nicky4212010@yahoo.com please if you can help if out
@gregfl Kindly help me my boy yousuf is diagonose as infantile spasm patient however he is given sodium valproate and emsolone now there is no more seizure but he cudn't hold his head and has cortical blindness, doctors are not giving much hope to me could you tell me he cud see or what would be the case.
my name is emily joy
emilyexorcismzombie 3 months ago
Aw... look at that big baby gurl.. she's big<3 and adorable
GoHealthyGreens 4 months ago
i have a 6month old daughter who started having the same spasm like yours. i am desperate for some answers, her doc has given her topomax and for a week she was spasm free but then it started again. so the doc wants to just increase the med and increase it some more. however, each time i increase the med it seems like she is getting worse. from having 5 or 6 wave per episode to 17-22 waves per episode. now the doc wants her to take vigabatrin. should we go get a second opinion?
mawomacks 1 year ago
Just wanted to advise everyone about Emily's status. She started the ACTH on April 27th. As of today (May 10th), she has gone a full week without spasms! Her neurologist says that if she goes another week without showing any signs of spasms, she'll gradually be weaned off the medication. Emily's doing great, sitting up well, smiling and watching everything going on around her, vocalizing and just generally looking healthy and happy. Thanks to everyone for your support and well wishes.
mudslinger90010 2 years ago 2
@mudslinger90010 @gregfl hey hi my daughter also have same thing infantile spasam and we looking what we should best so she get of out this. our dr gave topiramate for 2 week but it seem it is not helping her so if you can help me out my email is
ndp11378 1 year ago
To the parents: Just wanted to let you know that my daughter experienced the same "startle reflex" IS & was also idiopathic. She was on ACTH for six weeks (she was dx in January) & it normalized her brainwaves, so there is hope! We still watch her like a hawk & our playing the catch up game with her development, but all in all she is doing well (it's always in the back of our minds though). Yahoo has a great IS support group to bounce questions around is you need. I'm tkhertlein on the site.
tkhert99 2 years ago
Hey parents. This is Gregfl...the guy you contacted when you first went on youtube seeking answers. My and my wife's thoughts are with you and your beautiful daughter. My baby came thru this scary disorder and is doing well at almost two years old ...so have lots of hope and let me know if I can help!
gregfl 2 years ago
Thanks, we really do appreciate it. We'll let you know her status. She's been on ACTH for 4 days now, still too early to tell if it's working.
mudslinger90010 2 years ago
@gregfl hey hi my daughter also have same thing infantile spasam and we looking what we should best so she get of out this. our dr gave topiramate for 2 week but it seem it is not helping her so if you can help me out my email is nicky4212010@yahoo.com please if you can help if out
ndp11378 1 year ago
@gregfl Kindly help me my boy yousuf is diagonose as infantile spasm patient however he is given sodium valproate and emsolone now there is no more seizure but he cudn't hold his head and has cortical blindness, doctors are not giving much hope to me could you tell me he cud see or what would be the case.
savera777 11 months ago