Normal EEG yet treating w/seizure meds??!

Shauna - posted on 09/14/2011 ( 4 moms have responded )

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My son is 11 months old & started having seizure LIKE episodes around 3 months old. We have yet to be diagnosed. After a 24 hour EEG, 3 hour eeg's & an MRI the neurologist is stumped. all EEG's were normal even with the episodes occurring. We were first diagnosed with benign myoclonic spasms, then sandifers syndrome (although he had been tested for reflux & it was negative) but recently that has changed...new diagnosis is some sort of rare genetic stiffening disorder. strange since no one else in the family has this yet doctor is going with this for now..we have been on tegratol for 4 days and the spasms havent changed as far as frequency but they are only lasting about 2-4 minutes where as before they were 20-30 minutes. Also, his MRI came back sligltly abnormal & they were unable to rule out PVL so we have another schedule in 6 months to follow up. he does have development delay..unable to sit unsupported, not crawling, walking or holding anything so we receive PT & OT but we can not get any steady answers...anyone else go through anything similar?

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Jessica - posted on 01/19/2012

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My son was just diagnosed with epilepsy after 2 years of febrile seizures, and I'm still uncomfortable treating him daily for something that (so far) only happens when he is sick/running a fever. It is a very scary thing to put your child on medication every single day, when they all have potentially horrible side effects and we have to watch our kids get tired so much more easily, not want to eat, exhibit new behavioral changes, etc; however, we as moms all know how hard it is to judge when a fever/episode/seizure is coming on to treat it before it happens. The proactive method does seem extreme, but the meds they use to treat epileptic seizures are pretty standard across many different seizure types and it definately can't hurt to have a little extra protection....I would get a second, third, or fourth opinion if you are uncomfortable, but the fact that the doctors want to start treatment and find a medication that will work before they know the true cause doesn't really surprise me. Seizures are a serious thing. Good luck!

Michelle - posted on 12/08/2011

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My son is going to be eleven and thank god we have not seen seizures in him for over three years now and we went for four year without a formal diagnoses so do what the doctor's want and if you feel it is not right go get the second opinion while the first doctor is treating him because my sons first two EEGs were normal and at first he was diagnosed with bening rolandic epilepsy but now it was switched to cluster seizures. Also on January 30th my baby will have an EEG done to see if he is having seizures also because he has been waking up in the middle of the night and we can't get him to calm down for about an hour or more. So Good luck and god be with you in your journey to find answers and don't give up you are his voice. I will check back for more posts on how your journey is going or you my email me personally.

Rachel - posted on 11/30/2011

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my son is now nearly 10months, he started having seizures at 5 months. he had an MRI, Many EEG's,bloods, urine, they couldn't diagnose. (he had a silent reflux like problem from about a month old) They put him on tegratol and he continued to have seizures however not as long. When he reached about 7 months i decided to change him to soya milk as he had bad eczema (I have this and no i should avoid dairy) he has been on this since and no siezures? it was almost like turning a switch off, i couldnt beilve it he doesnt even have his meds any more. I also think he has issues with fruits. He has had more bloods and his genetic came back abnormal which is still getting investigated. hope you find out whats wrong soon, i definitely understand it so frustrating not knowing what is causing it.

Misty-Lynn - posted on 09/16/2011

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My son's EEG came back showing that he in fact did have abnormal electrolyte activity in his left lobe so I would have no idea on that, but I would feel uneasy about putting him on medication without a formal diagnoses, maybe you should hold off on the meds and look into a second or even third opinion first to make sure there won't be more damage done in the long run - a lot of seizure medication can cause liver damage and you won't want to live with that on you if it turns out it was unnecessary...good luck in finding out what is really happening with the little guy. My thoughts are with you and your family.

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