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Baby with seizures

meltycheeseburgermeltycheeseburger member
in Special Needs
Hi all! My ds has started having what we think are staring seizures. He started displaying symptoms a couple of weeks ago and he had his first EEG this afternoon. He did have a staring episode/tremor during it, so hopefully that helps in the diagnosis. What should have others experience in terms of testing of treatment after the EEG? He is not having any developmental, muscular or reflex issues, but he is having 5 to 10 a day and will become a safety issue as he gets more mobile. Thanks!
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Re: Baby with seizures

  • meltycheeseburgermeltycheeseburger member
    I just realized my question is a hot mess. Sorry I'm still winding down from the test.
    Here it is again: what have others experienced in terms of testing or treatment after the EEG?
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  • meldoo2002meldoo2002 member
    My boys both have seizures, but they are infrequent... once every 6-12 weeks and only when they sleep, but involve some other things besides just seizures (vomiting, incontinence, etc.).  That said their seizure activity showed up on EEG.  We also had an MRI following the EEG to rule out brain abnormalities.  MRIs were clean.  They were put on medication ... Trileptal at first based on the EEG, though after showing an allergic reaction 3 doses in, they were changed to Keppra.  One has been on Keppra for 8 months with dose increase every time he has a seizure (and now has been seizure free for 5 months... knock on wood).  The other has been on Keppra for 4 months.. .his seizures started later, and has been seizure free 8 weeks.  We'll keep them on these medications at least 2 years and then re-evaluate.    I hope you get the answers you need and his seizures are under control soon.

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  • meltycheeseburgermeltycheeseburger member
    Thanks! That helps a lot. My husband and I have been a mess because of the unknown, but this def helps us get an idea of what's next.
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  • Happy2bNappyHappy2bNappy member

    Hi ladies, haven't been on these boards in a while. I think you ladies should look into Benign Paroxysmal Torticolis (BPT). The symptoms that you both mention sound a lot like it (staring seizures, vomitting, clean MRI/EEG). Not saying thats the case with you ladies but u can read up on it and see. 

    It is a rare neurological condition that kids grow out of by the age 5. My DS has BPT he is 2 1/2, he didnt have the seizures but I know of other BPT moms who that was the case with their LO. 

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  • meldoo2002meldoo2002 member
    Thanks Happy... you're mentioning it caused me to google BPT, but I don't think that's what my guys have.  Their EEGs are not clean and show clear seizure activity even in a 1 hour EEG.  I had never heard of BPT before and work in EI so it's always interesting to me to hear new things... thanks.

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  • Happy2bNappyHappy2bNappy member
    Ur welcome, hope your boys will be ok. BPT is very rare and a lot of times it is misdiagnosed, I have heard a few cases where it is misdiagnosed for epilepsy. Because most kids outgrow the condition by age 5 not much research is done. The cause is not clear, but kids who have BPT have a family history of migraines. There is a FB group that is really helpful, I know there is at least one neurologist in that group who has joined so she can learn more from BPT parents.
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  • mopdop2000mopdop2000

    My 4 yr old had a EEG last week, which showed seizure activity. His neurologist has put him on Lamictal, an epilepsy drug that you have to wean on to very slowly. So he is still having seizures during the day that we see, and most likely more at night. We have to wait for about 8 weeks until he is up to a therapudic dose to see if this med will work.

    This was originally posted about a week ago, any results yet?

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