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Has anyone had a child grow out of having IS?
Mon, 01/30/2006 - 09:30Topic: Parents & Caregivers
My son has infantile spasms. He is on Topamax and Kolopin right now. We were told that there is still a chance that he may grow out of this condition. Could that be true? Has anyone ever "beaten" the seizures? Hoping for a brighter tomorrow.
Comments
Re: Re: Has anyone had a child grow out of having IS?
Submitted by guitarmomma on Sun, 2006-02-26 - 12:59
I do not know about her kind of seizures she has. I am assuming the eeg was abnormal?
They could be partial, if that is what the eeg shows and just generalize to tonics very fast.
Have any of the doctors looked into Anoxic seizures? I have not heard of urinating causing them but I know pushing to poop can for some.
I am so sorry the medications are not stopping these!
Did they do an MRI to see if there is a structural cause?
Gin
Re: Has anyone had a child grow out of having IS?
Submitted by elaine on Wed, 2006-05-31 - 01:34
My daughter was recently diagnosed with infantile spasms. I'm looking for happy endings also with not much luck. My daughter has been on ACTH for 20 days and her seizures are getting worse. She is having more clusters each day. I am so scared!!! There are so many unknowns out there. The neurologist says we just need to focus on stopping the seizures for now. After that, who knows?!?! It seems like a lot of babies with infantile spasms end up having some kind of developmental delays and learning disabilities. It breaks my heart everytime I helplessly watch her have a seizure. How is your son doing? I hope he beats the odds. Please share any success stories that you have heard. Hopefully, your son is one of those success stories!!!
Re: Has anyone had a child grow out of having IS?
Submitted by MaMom on Fri, 2006-02-24 - 16:11
I'm sorry, I've been through this and there's a 20% of children that have a happy ending. The goal is to stop tehe seizures and when this happen your baby can have a great chance of developing normally an also outgrow the situation. You can read a lot of stories in www.kidsepilepsy.com, there you can find some happy endings. I'm also living through tihs. It took 1 1/2 month to control my baby's seizures, that he presented since he was only 15 days old. Now he is 14 months and is developing slowly I think most because of the medication. Till now he had 3 different diagnosis, made by 3 differente neuropeds: IS, Generalized and Partial. Finally the diagnosis is not so important, the most important is that he has 1 year seizure free now. I hope your story can have also a happy ending and god bless you and your baby. Be strong and keep on praying for all our babies that have to live this hard time.