quivers...or something of the sort?

Brandy - posted on 07/16/2010 ( 3 moms have responded )

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my son began having seizures when he was about 8 hours old. he was in the NICU for 13 days and has been on 1.5 mL of phenobarbital since he was 2 days old. he hasnt had a full blown seizure since he was 3 days old. we have been home for 4 weeks now, and i have recently been noticing some frequent quivers in his bottom lip. (almost like he is shivering, but much faster movement) and also some twitching just in his right arm and right foot.
when he began having seizures, he would stop breathing and he would appear to be very "dazed" and stare off. with these quivers and twitches he experiences now, he doesnt stare off or seem dazed, but im still concerned that these may be some seizure activity. ive spoken to his pediatrician about them and he told me not to worry.... but i cant help it.
do any other moms have these in their children and if so, what have you done for them, or what has your dr told you?

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Brandee - posted on 07/22/2010

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My sons seizures have always been a little "odd" so you can't always go by the basic signs. The last time my son was seizing it looked like cold chills. He would just shiver for a moment and go on. I ignored it too for awhile and found that that was a mistake in the end as he had hydrocephalus.
I certainly hope it is nothing but trust your senses. If you feel something is wrong get some answers. Know that not every doctor will have them and if you can try to record the episodes on film. We have always found it easier to explain to our neurologist if we have video in hand. Good Luck!!

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Virginia - posted on 07/26/2010

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Brandee, that's what my son's last seizure looked like, like he was just really cold but then he started whining mommy the way he does right before a grand mal, so I hurried up and gave him his rectal valium and he stopped shaking after one minute.

Tanza - posted on 07/19/2010

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Brandy- much love to you and your family. I hope you have a great support system there with you!

Obviously I am not there to see what you are seeing so part of it is going on the 'Mommy gut-instinct'. However, many newborns move/twitch their mouth while sleeping as well as a leg or arm whiel sleeping. I know with my 8yr old son who just started with lots of seizures this year, I would watch him while sleeping and be in tune to every little change in breathing, movement, etc. I think at times I became a bit too worried - simply because it's scary to watch your child go through this - muchless your tiny infant!

Spend some time with other moms who have infants, watch their kids while they sleep ( as you hang out together) or have them come over and just see your baby. Get a measure for does it look like normal sleeping or is it something you need to bring to the doctor to check out. Another idea, video tape it. At this age you see the pediatrician and prob neurologist often enough - then bring the video in to your next appt. They can see what you see and then let you know.

Good luck and lots of hugs!!!! Tanza

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