Special Needs

LOs with Seizures?

When was your LO diagnosed? Was it through long term monitoring? A standard EEG?

I have been battling with several neurologists over several months to get my 13 month old daughter diagnosed.  I believe she has been having seizures from birth, but it wasn't until I caught an episode on video in addition to an abnormal MRI that they finally "believed" me.  Several episodes of long term monitoring did not show any abnormalities.

I'm just seeing how many other LOs are battling this issue, and what types of treatments you are seeking.

Tori 10.10.09 / Callie 9.14.10 / Callie's Epilespy Journey

Re: LOs with Seizures?

  • DS had one at 15 months.  By the time he was at the hospital he was fine.  They didn't diagnose him until his 3rd episode I believe.  I was hoping the first 2 were a fluke.  The 3rd was a cluster and they observed it.  That's when we started medication.  He was about 26 months.  We didn't see one on eeg until he was 4 1/2.  I'm pretty sure they believed us he was having them from the start though.  His are REALLY obvious.
  • I am so sorry you are going through this. We were similar to LazySusan, the first time we took DS to the ER he had one in the exam room. So it was pretty obvious.

    We have been on meds (Keppra) since then, and under control except when he outgrew the dose.

    Have you had a 3-day EEG done? We had one during the time period when DS had outgrown his dosage, so they captured a ton of seizures. It would be great if one of the neuros you are dealing with would agree to setting that up when she has a week where they are happening more frequently, so you can up the odds of capturing them during an EEG. DS' was done spur of the moment-- he was in for an hour-long EEG and had a biggie during that EEG. The tech (whom I will forever be grateful for) grabbed his epileptologist who happened to be on the floor, and they admitted him for the 3-day.

    Hang in there. That has got to be nervewracking! 

  • Loading the player...
  • DS was having "episodes" where he'd get relatively unresponsive and very hot and sweaty, his lips would turn blue, then he'd snap out of it and be fine. They did a 30min EEG, a quick picture MRI and a fully sedated long MRI. Every result was normal, until he had a 24 hour video EEG. They saw he had seizure activity in the left hemisphere of his brain. This was when he was 7mo, he's now 14mo and we're going back for another 24 hour EEG because the medication has lost effectiveness and he's been having seizures again. Definitely push for more testing! We kept a VERY detailed log of everything that happened when he had a seizures - his location, what he was doing, who he was with, what he had eaten, when he last napped, etc. Also, try and take more videos - our neurologist loves when we have videos to show her!
    Wedding Countdown Ticker Baby Birthday Ticker Ticker
  • I second the videos and logs. DD1 had no seizures on her first eeg and on the second one the tech kept her going for about 20 minutes longer than she was scheduled for because she had a gut feeling about it. Thank goodness, it was at the very end of that extra 20 minutes that DD1 had 3 myoclonic seizures. Over the next few months she had a sedated MRI, multiple 30 minute eegs, an extended eeg/B6 challenge and then a 24 hour video eeg to confirm the diagnosis.

    Even with all the eegs and that information our neuro still found it helpful to actually see a few seizures on video to get an idea of the bigger picture.

  • DD started having seizures before we were even out of the hospital when she was born. we told the nursery staff that certain things she was doing looked funny to us but they insisted that it was normal baby behavior. we ended up taking her to the children's hospital the day after we came home because she had probably four in a day and the last one lasted about five minutes. the only reason they believed us about the seizures is she had one in the triage, and thank god we were there was they clocked it at nine minutes long :( we spent nearly two weeks in the hospital, she had a 48 hour video EEG and multiple cscans and MRIs. she has an appointment with her neurologist in january and they said they'll most likely do another short 20 minute EEG then. right now her seizures are under control with keppra, phenobarbital, and vitamin B6.  

    definitely video tape them when you can. even while in the hospital some doctors still didn't believe us when we said she's having seizures so our video helped just so we could prove to them that we weren't lying/stupid.  

    image image
    Baby Birthday Ticker Ticker
  • My little one was diagnosed at 2 days old.  She was given a car seat study to make sure they could send her home as she was a mere 4 weeks premature.  She had an "apnic" event, which they later determined was the second of many many more seizures...as she actually had a similar event with me before she went for the study.  


    We control with Keppra and Topamax and Maura is currently 2 months and 6 days seizure free... 

    Warning No formatter is installed for the format bbhtml
This discussion has been closed.
Choose Another Board
Search Boards