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Has anyone had a child grow out of having IS?
Mon, 01/30/2006 - 09:30Comments
Infantile Spasms Support Grou
Submitted by Keri Kennedy on Sat, 2008-01-12 - 16:11
Hi everyone. My daughter is a 2 1/2 year old, who was initally diagnosed with IS. I with I could tell you she has grown out of it. But alas, we have "progressed" to the diagnoses of Lennox-Gastaut. I wanted to make sure you were aware of http://www.infantilespasms.com/forum/index.php
this is a forum specifically for parents, family and friends of children affected by IS. I've been a member pretty much since Mike started the forum. Every time I see a post about IS on another epilepsy board I make sure to tell the parents about it, because they just may not get the support they really NEED on a general epilespy board (although I still love myepilepsy.com).
Best of luck to you. We are now at a stage where we are considering the Ketogenic diet for our daughter. She is doing amazing well considering how many seizures she has. She does not walk or talk, but she does cruise and crawl and she does babble. She is also otherwise a very happy child.
My Daughter may have seizures, but she is still perfect.
Hi everyone. My daughter is a 2 1/2 year old, who was initally diagnosed with IS. I with I could tell you she has grown out of it. But alas, we have "progressed" to the diagnoses of Lennox-Gastaut. I wanted to make sure you were aware of http://www.infantilespasms.com/forum/index.php
this is a forum specifically for parents, family and friends of children affected by IS. I've been a member pretty much since Mike started the forum. Every time I see a post about IS on another epilepsy board I make sure to tell the parents about it, because they just may not get the support they really NEED on a general epilespy board (although I still love myepilepsy.com).
Best of luck to you. We are now at a stage where we are considering the Ketogenic diet for our daughter. She is doing amazing well considering how many seizures she has. She does not walk or talk, but she does cruise and crawl and she does babble. She is also otherwise a very happy child.
My Daughter may have seizures, but she is still perfect.
My son was diagnosed with IS
Submitted by Elissa D. on Thu, 2018-07-19 - 00:07
My son was diagnosed with IS at 6 months old. He was put on topamax with no luck. We then started acthar gel (injections) and it worked. He has not had an episode since 9 months. He's had developmental delays, walked at 1 year and talked at 2 years. We continued therapy throughout school years. My son graduated from high school in 2016. He's a perfect young man, working and full of life. He's a miracle and I thank God every day. It is very possible to grow out of them. Be persistent in your medical care, therapy's, get 2nd/3rd opinions if ever doubtful. Do not give up!! Most of all pray! God is so faithful!! I've seen his healing power. I will pray for your baby!