my daughter has infantile spasms

Tia - posted on 04/22/2010 ( 11 moms have responded )

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Hi my daughter taylor is 8mths and has suffered from infantile spasms sinces 4 and a half mths. she is on nitzapam and carbamazipine which keeps them away but when she gets ill they come back. taylor has other probs to. such as diabetes insipidus and is adrenal supressant

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Stephanie - posted on 05/03/2010

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Yes I live in Texas. I have done research on the side effects and the worst one is 30% of patients can lose 10 degrees of their peripheral vision after they have been taking it for a long time. It was a good choice for us. I am now worried if the new meds will work or not. She has not taken her first dose yet because the pharmacy had to order it and she has 5 seizures today.

Tracy - posted on 05/03/2010

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I didn't want to try this because my daughters neurologist said that there is bad side effects to that drug. So we just went with the pheno, keppra and klonopin. Stephanie are you from the states??

Stephanie - posted on 05/03/2010

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No one has tried Vigabatrin/Sabril for IS? My daughter has had IS since she was 4 mos and is 15 mos now. It worked but just recently she has been having Partial Seizures and is now on the vigab. and trileptal.

Tia - posted on 05/01/2010

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Yeh she has had acth once it worked while she was on it but returned soon after but not as bad so she is on meds. xx

Tracy - posted on 04/29/2010

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My daughter had IS from the time she was 4 months until 12months. She was on ACTH twice but the second time it didn't really help. She was also on pheno for her complex-partial seizures but after they took her off the ACTH the second time they added keppra and klonopin. She is almost 16months now and her neurologist has said that she has epilepsy and due to the IS she may never walk or talk and that she will be fully disabled. I have to have faith that my little girl is going to beat this and that the Lord is going to heal her. Has anyone else been told this?? She still can't sit by herself with out help and she is not talking. She does have physical therapy every week and we work with her all the time.

Katie - posted on 04/23/2010

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My son was diagnosed with IS at 8 months and was put on ACTH and have been seizure free for 4 weeks! He also has neonatal diabetes diagnosed at 2 months. I haven't met anyone else who has been diagnosed with both

Katie - posted on 04/23/2010

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My son was diagnosed with IS at 8 months and was put on ACTH and have been seizure free for 4 weeks! He also has neonatal diabetes diagnosed at 2 months. I haven't met anyone else who has been diagnosed with both

Katie - posted on 04/23/2010

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My son was diagnosed with IS at 8 months and was put on ACTH and have been seizure free for 4 weeks! He also has neonatal diabetes diagnosed at 2 months. I haven't met anyone else who has been diagnosed with both

Katie - posted on 04/23/2010

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My son was diagnosed with IS at 8 months and was put on ACTH and have been seizure free for 4 weeks! He also has neonatal diabetes diagnosed at 2 months. I haven't met anyone else who has been diagnosed with both

Katie - posted on 04/23/2010

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My son was diagnosed with IS at 8 months and was put on ACTH and have been seizure free for 4 weeks! He also has neonatal diabetes diagnosed at 2 months. I haven't met anyone else who has been diagnosed with both

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