infintile spasms help

Rosie - posted on 06/02/2011 ( 7 moms have responded )

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my daughter was just diagnosed with infintile spasms and is set to start on sabril does anyone know what i should expect while my daughters taking this medications.

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Rachelle - posted on 07/26/2011

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My daughter has had them for over a year now and is 2 1/2 and still has them. She has been on topimax and on prednisone and the helped but did not stop them. We stopped prednisone but have now added keppra which has helped. Be careful with some meds that make them drowsy because the spasms occur upon awakening and when drowsy they mentally go to sleep and when they awake from that they can occur. We had that happen with to high a dose of keppra. She has not had any in about a month and the hope is there. She is likely to develope Lennox Gastout Syndrome which can result from the infantile spasms if not stopped before 2 years old. She has already had one of them which was mild. Our Dr will not do the ACTH because she has extensive medical issues and death can occur from it and he does not think the benefit out weighs the risks for my daughter. Hope this helps you.

Carmen - posted on 06/08/2011

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Hi Rosie,
My baby Amy had infantile spasm when she was 9 months old, and her neurologist tried with Vigabatrin(sabril) because that works on most of the kids. They told me the vigabatrin can affect the vission, so we kept checking her eyesight for a while. Vigabatrin didn't work on Amy, so she was on ACTH for two months and God gave us the gift of see the infantile spasms gone! I hope the vigabatrin will work for your baby, I know what you are feeling, I have been there.... God bless you!

DawnMarie - posted on 06/07/2011

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My son Dominick is a twin six and a half weeks early. He was also diagnosed with infantile spasms by our neurologist. It was scary to watch him and his body jerk around but he never went on medicine. We observed him very closely and monitored with many neuro visits and he out grew them by two.
I am sorry I cant help you about the meds but I wanted to give you some encouragement that she may outgrow them. Dominick is 6 years old now. He does take meds for his adhd since he was four and has responded nicely to that.
Keep your chin up, I know its hard to see your child go through this and if you have doubts,, seek another opinion.

Karen - posted on 06/07/2011

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Hi Rosie. If you are on facebook, look up BAILEY RAE VESSY FOUNDATION. There little girl has infantile spasms. It only seems to occur in girls this condition . or look for carmen vessey who is the mom. They live near Hillcrest. They have been through a lot and can advise you. chat soon .

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Has anyone checked to see if she has vitamin deficiencies? Magnesium deficiency can cause spasms.

Ali - posted on 06/07/2011

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My daughter was on it for 6 months. After 3 days of being on sabril, she started smiling again and then within a week she started sitting up. After 6 months, they weaned her off of it and she didn't have the infantile spasms anymore. She did end up getting myoclonic seizures and had to be put on valproic acid for those. She had no side effects from the sabril at all. The valproic acid on the other hand was an issue.

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