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KevsLove
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Infantile Spasms??
KevsLove
member
Hi ladies, So my DD was just given the diagnosis of having Infantile Spasms (a mild form). I don;t know if I belong on this board but I don;t really have anywhere else to go. We're keeping this info off Facebook and just family and some friends know but I feel so alone, scared. I know it's a mild case and even the neurologist is extremely optimistic but I can;t turn to the internet sites because it's almost all horrendously scary cases or medical jargon.
Has anyone ever dealt with this before?
~*~
Plumpynut loving on Baby Brother E
~*~
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Re: Infantile Spasms??
My daughter was diagnosed with infantile spasms on her first birthday. She is now a little over 2 and is catching up developmentally. What medication are they going to use to treat her? My daughter was on ACTH for a month and it cured the infantile spasms. I would suggest not googling too much. Infantile spasms can be so scary and the stories out there are terrifying. The day she was diagnosed I went on the computer for about an hour and I was a wreck. I decided to stay off and it was a good decision.
Where do you live? I am south of Boston, she was treated at Childrens Hospital.
I would be happy to answer any questions you have. If you want to you can email me janjanabelle@aol.com
Good luck!
My son has a more severe case of IS than you describe. The neurologist was not that optimistic because his IS started when he was only 1 month old. The IS were briefly controlled with Vigabatrin (Sabril), but then after a few months broke through again. We have not been able to get them completely controlled again in the past 3 years. Because of the uncontrolled nature of his seizures he is severely delayed developmentally. We were lucky that his IS did not cause regression in general, just delays in his development, especially speech. He can walk, though he is unstable for his age. But he does not have any words yet. Despite all of this, he is still the sweetest little boy I have ever met.
As a pp said, IS has a wide variety of outcomes, but getting them under control is the most important thing. So searching for answers from the internet will never tell you what you & your DD's road through seizure land will look like. But remember, no matter what happens from here on out, your DD is still the same little person that she has always been.
Welcome.
My DS has epilepsy that started at 3 months of age, but is not considered infantile spasms due to the type of seizure he has. I definitely recommend checking out the Epilepsy Foundation. You can "like" them on FB, too.
Each child will write his or her own story. Enjoy your adorable little girl.