Long Long LONG Day!

Discussion in 'The Watercooler' started by susiestar, Sep 1, 2009.

  1. susiestar

    susiestar Roll With It

    Jessie had to go get a video EEG done. Apparently this is the new trend in EEGs. They use a digital camera to see what the patient is doing as they measure brain activity.

    We were hoping to see a shaking episode so the docs could see how it is different than her other seizures. husband was going to take her with-o me but she asked me to PLEASE PLEASE not make her go with just her dad. No matter how hard it was I couldn't stay home.

    We went for eye exams before teh test. thank you included. Then ordered glasses for the 3 of them. I will wait a while until we are sure my medications are stable because they do change things sometimes.

    Then we went to Jessie's test. We were told it would be a 24hour video EEG by the pediatrician. The lab said that it would be no more than an hour including placing the leads. I made them call the doctor to check. The shorter one is all the insurance would pay for first. IF it shows enough problems then they will do a longer one.

    The first few minutes she was just laying down. Then they put a bright light in front of her and it flashed on and off very quickly. I had to close my eyes because it was so bright. Jess was supposed to keep her eyes shut for it.

    Then they gave her a pinwheel and she had to blow on it for a full five mins. I snuck out to the potty and she was in full shaking when I came back. It was really bad and lasted almost ten minutes. It truly shakes every part of her body. She got cold just before it happened, then they put a sheet over her and she started shaking just seconds later. I am not sure if that happens before all of the episodes but it is something new to watch for.

    I am glad that they were able to catch it. Now we just need to hope they can STOP it.

    Thanks for keeping us in your prayers. I so much want my little girl to stop hurting.

    I got my first haircut in 18 months while husband and thank you were getting their eyes examined!! My hair was almost to my tushie and now it is just below my shoulders. I can pull it into a ponytail but otherwise do not have to fuss with it.

    I wish one of the locks of love programs took gray hair. I contacted three and NONE of them would take it because it was greying. Over 13 inches of thick thick hair - trashed.

    But I feel like I lost ten pounds!!!
  2. gcvmom

    gcvmom Here we go again!

    The lights and hyperventilation are known to be triggers for some kinds of seizures. I'm glad they were able to set her off so that they could record what they need. As you know, it's not uncommon to totally MISS seizure activity on these EEGs. I wish husband's could be triggered reliably so we could capture them for analysis.

    Hopefully they will be able to tailor a treatment plan for her now! I know how upsetting husband's seizures, and they are VERY mild compared to the kind you are describing. I can appreciate your longing for a "cure" or at least a treatment that will control things better. It's so hard to watch them suffer.

    Congrats on the hair cut! I bet your head feels MUCH lighter :D
  3. ML

    ML Guest

    I sure hope they figure something out that will Imake a difference.

    I'm so glad you got your hair cut.
  4. mrscatinthehat

    mrscatinthehat Seussical

    That does sound like a long day. Hope they can help Jess soon. I know when I have gotten my hair cut it feels amazing. Enjoy the new do.
  5. Andy

    Andy Active Member

    I can imagine how hard it was to watch your daughter shake even though that was what needed to happen to catch the seizure.

    My difficult child is scheduled for a 48 hour EEG in two weeks. It was hard to watch the normal EEG being done.

    I hope they diagnose the results of Jessie's tests correctly and get her on a treatment plan to eliminate or diminish the problem.
  6. witzend

    witzend Well-Known Member

    Wow! Hopefully this will help them figure out how to help Jess!