About Time!

Discussion in 'The Watercooler' started by susiestar, Aug 26, 2009.

  1. susiestar

    susiestar Roll With It

    Jessie started back with the extrapyramidal effects causing all over body shaking. She had this a few months ago and I had to take her to the City 75 miles away just to get someone to look at her and realize it is a problem.

    Well, about 10 days ago it started again. First we tried benadryl (for once it really IS the first treatment option the ER can give - our local hospital uses it for everything so I was very very skeptical of it!) and she was taking 4 tablets of it at a time with very little help.
    So we had no luck with the benadryl. Then we were told to try atarax. So we did. No improvement.

    husband took Jessie to the doctor and I sent a note with what was going on (husband will NOT talk at doctor appts - even his own! I end up going with him or sending detailed notes every time. Once I even drew on his back with a sharpie to point out moles that needed to be checked!).

    They sent her home with a stronger dose of atarax and said to come back tomorrow. They want to see her today and if the shaking is still there then they want to do a video EEG, possibly in-patient. I am glad they are getting a plan together.

    She just told me that they were leery of giving her a muscle relaxer and more pain medications. They are worried about addiction. I don't think it will be a problem but the caution is appropriate. But the sights I found all say valium or xanax and muscle relaxers are the way to go, plus pain medications as needed.

    She is now shaking for up to 2 hours at a time. It is scary to watch.

    If I can make it to the doctor then it will go well. Otherwise I will send a note. I may have them do a phone conference if husband doesn't mind.

    Sorry for the ramble. Please send some board juju to help my Jessie.


    As for what causes this, we have no clue. Theoretically it is caused by a medicine but she hasn't had a medication change in over 6 months.
    Last edited: Aug 26, 2009
  2. AnnieO

    AnnieO Shooting from the Hip

    Susie... What seems to trigger this? Onyxx does this when she has anxiety attacks from the hallucinations - but only if they're really, really bad. I only shake when I'm stressed out.

    I'm rattling, praying, etc. for Jessie. This has to be frightening for her. Lots of HUGS!!!!!
  3. Star*

    Star* call 911........call 911

    If this hospital/doctor does not find something and really help this child I know someone ELSE who is going to be shaking....until their teeth fall out. But it's okay - you can still give orders with gums. :mad:

    Sending hugs for our Jess to be well and better and stop shaking.

    Auntie Star
  4. susiestar

    susiestar Roll With It


    She saw the doctor. They called me because the doctor wasn't sure about giving her a muscle relaxer. It is NOT a permanent or chronic prescription, just something to help try to make her comfortable. These episodes (as Jess calls them) are incredibly painful.

    The neuro, who I LOVE, never sent a bill to us and refused to schedule because we had an outstanding balance. I paid that (the whole $25) and then they tell me that the doctor has dropped my insurance co because they are slow to pay.

    They won't even let me book an appointment to pay cash! So they won't see her at the neuro until we get onto the state kid's insurance (which the doctor DOES take).

    So I am working to try to get us onto soonercare. At least the kids, I won't qualify but that is OK.

    Thanks for the support and letting me vent. The pediatricians are really worried and are setting up a video EEG in the meantime.
  5. KTMom91

    KTMom91 Well-Known Member

    Sending good thoughts and some pain-free days for Jess.