Monday, September 20, 2010

update- nystagmus

this is what was happening to arden in the video i posted. sorry for the poor quality, by the way, and the length.

here's the story: this morning, arden fell backwards three separate times while sitting. i don't know why she fell. seemed that she just lost her balance. anyways, the third time, i saw her start to fall. i went to her quickly and picked her up when she started to cry. i looked at her face and saw that her eyes were moving rapidly to the left. this was an uncontrolled action. this rapid uncontrolled eye movement is called nystagmus. most likely this episode was caused by the fall(s).

i just realized i never wrote about our ER visit when she was 6 months old. after our big trip to boise, we had to go to the ER for the same thing, minus the falling. i was sitting in the living room playing with arden when she started flopping her head into my chest. she stopped after 3-4 times. i thought to myself, "that was odd." we played for a little bit more. i raised her up in the air and brought her back down, then her eyes started moving. it freaked me out big time. i tried to snap her out of it (literally snapping in her face). when that did nothing, i rushed her into the bathroom to get anna out of the shower. then i called 911 because i had no idea what was going on. the eye movement probably lasted a minute. 911 said it could have been a seizure, but it was inconclusive. i called our nurse hotline for our pediatrician. they said to go to the hospital just to be safe. we went, and after a couple hours we were told it was probably nystagmus. again, inconclusive. they said if it happened again to try to get it on tape.

thus, the awful phone video i posted. you can see her eyes moving in the first minute. the rest of the video is just to record how she was acting afterwards. i was really trying to remain cool while in my head i was stressing. this time there seemed to be a reason for the nystagmus, but last time there wasn't. what is going on with my baby's head?

i sent the link to the video to our doctor. he said it did appear to be nystagmus and the pediatric neurologist at a local children's hospital agreed. that doctor wasn't too worried though. arden's episode seemed to be pretty minor. they did recommend having an EEG done, just in case. what they would do, because of her age, is stick a bunch of wire to her forehead and let her play. they would watch what was going on in her brain during this time. they would look for any evidence of a potential seizure hiding in her brain. the test seems to be pretty non-invasive. (but it still makes me want to crap my pants.) i'll talk to the doctor's office tomorrow to schedule the EEG. i'm hoping we can do it this week. i just want some answers. i want to know my baby is healthy.

i'm really trying to be ok with everything. nystagmus isn't serious, as far as i can tell from dr. google. but i still feel like crying. it's so frustrating to not know what is happening to arden. to not have definitive answers. i was hoping this was all behind us after the first time. i was starting to forget about it. i dislike not being in control of this. i want to put a helmet on her and put padding everywhere in the house. then, i also don't want to do this. i don't want my baby going around cautious all the time. i love how adventurous she is. she just tries things. she is so active. i don't want that to ever be stifled.

i gotta move away from this topic before i get sucked down. the doctors will have answers. this is not serious. my baby is wonderful.

so... you guys got a behind-the-scenes glimpse of my life :) baby in pjs and momma in a bathrobe, hair sticking up all over. toys strewn about the living room. using the couch as my desk. :) things i never intended to show my readers. oh well. that's what mommy-hood looks like sometimes (ok, most mornings). please tell me this is true for you guys too :)


  1. I can relate to your concern over Arden's heath. Our baby hasn't been born yet, but we've already had a few concerning episodes and I have found when there are still so many questions, you just want to know what is going on. I hope you're able to get in for an EEG soon so you can get some answers. Since the doctor didn't seem overly concerned, I would try to convince you not to worry too much either. Best of luck.

  2. first, i am sure she will be ok, its good that you are going to the doctor, and getting her that check up.

    second, your house is not messy, dont worry about that at all!

  3. So glad it isn't serious. Literally one of those times it looks worse than it is :) Thanks for sharing. I bet someone will come across this and it will help them cause their baby goes through the same thing and they have no clue what is wrong.

    Don't worry about the behind the scenes look. It literally looked like the happenings in our house!

  4. oh my goodness, im sure that was really scary the first time it happened. sounds like you are getting good medical attention (and comforting answers). still, i will keep that wonderful girl of yours in my thoughts until you are finished with all the testing.

    and yes, mommy-hood looks the same in our house! ;-)

  5. Oh man, that's scary. I'm sorry she has that, but hopefully that's all it is. I haven't read up on it...I wonder if she could grow out of it.

  6. Oh, Kat, what a scary thing to go through. It does sound like you're getting the right tests done, and are in good hands. You're in my thoughts.

    PS - my house is a disaster. :)

  7. How scary that this has happened twice. I hope the EEG happens soon and gives you all some answers. You're right that it's not a very invasive test, but they can be really informative, and I hope that is the case for Arden.

    As for the behind-the-scenes glimpse: substitute messy hair in a ponytail and athletic apparel with chunks of food deposited on it by baby, and you're at our house. :)