8/15/09 – Seizure

Renny had a  seizure – her first seizure –  2 mornings ago.  It was not a good experience.   I “happened” to have a meeting that morning and so was up earlier than normal, and I “happened” to go into her room to check in on her – I rarely do this – and when I walked in I heard some strange noises coming from her and when I looked in her crib she was seizing.  We had no idea how long this had been going on.  I immediately grabbed her and brought her in our room, where my husband quickly checked the Internet, which said if it was a first time seizure, to call 911.  In less than 3 minutes the First Responders came, followed shortly by the paramedics, which by this time the seizure had been going on for at least 10 minutes.  Once in the ambulance, they tried getting an IV in her to give her medicine, but they couldn’t get it in, so they gave her a shot instead, which I guess was the same medicine but took 10 minutes to work rather than the IV’s immediate effect.   She got a second shot halfway to the hospital, and once there they finally got an IV in.  The shots had slowed down the seizure activity, but even after the IV she was still doing some twitching somewhere between 7:30 and 8:00 (I can’t remember exactly).  SO, her seizure lasted at minimum of 90-120 minutes, possibly more, since we don’t know when it exactly started.  We find out later that a seizure of even just more than 5 minutes recommends emergency treatment (at least for the first time seizure), and even 30 minutes is seen as a prolonged seizure.  So, she had quite the lengthy seizure, and it was hard on her poor little body.

After a variety of tests,  to check for infection and whatnot, they also did a CAT scan to make sure there wasn’t a problem with her shunt.  None of these tests showed anything.  They talked about tapping her shunt to check the fluid to see if there might be an infection there, but since they saw no other signs pointing to an infection, they decided not to (to avoid other possible risks from taking the tap).   It was a long day – most of it is a blur actually.  She slept most of the time, due to recovering from the seizure and also from the medication in her.  She stayed the night for observation.  We learned that she is going to be on anti-seizure medication for 18 months.  They have no definite cause for the seizure, but they did find in her cultured urine sample a strain of bacteria she has never had before.  So, this means she did have an infection, but it only could have triggered the seizure if it had caused a fever first (which actually would have been the trigger), but we don’t know for sure if she had a fever beforehand or not.  She had cried 2 separate times during the night; I checked on her the first time, my husband the second time, and we both noted to ourselves that she felt warm, but we attributed it to  a warm room.  So, she very well may have had a fever from the infection and triggered the seizure…..but we don’t know that for sure.  It will most likely be ruled a prolonged seizure due to “unknown” cause.  Febrile seizures, which you may have heard of, happen with young children, triggered by a fever, but are usually less than 15 minutes long, so I do not think they will classify this as a mere febrile seizure.  Having spina bifida did put her at a slightly higher risk of having a seizure, but it is still not “common” for individuals with SB to have seizures.  There’s a lot more info on seizures, but too much for here.

For now, Renny is home, but she is very worn out.  The medicine is also making her feel very unsettled, restless, off balance, and tired.   Her body will supposedly adjust to the medicine in a few days to a week and she will no longer have those side effects.  We go in for a follow up check later in the week.  The pediatric neurologist was unavailable when we were in the hospital (we met with his PA/assistant and the adult neurologist while there), so we will be able to meet with him at this check up.

Please pray for Renny, that she will recover completely from this seizure, which was so long and hard on her body.  Pray there will be no long lasting consequences/effects, that she will quickly adjust to the medicine, that she will bounce back to her normal self, and that she will not have any more seizures.  (I know many people have a seizure disorder, but the length of her first is of concern.  It would not be good for her to experience another one, especially of that magnitude. )  I will update again after her check up next week.



One Response to “8/15/09 – Seizure”

  1. Gravatar of Sarah Sarah
    24. August 2009 at 19:27

    Wow – I just read this. I can’t imagine having to watch your child go through that. How scary. Renny and your family are in my prayers – that Renny will not suffer any damages from the seizure and that this will have been the first and last.

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