Ray of Hope for Jess, and maybe even 2!!

Discussion in 'The Watercooler' started by susiestar, Dec 4, 2009.

  1. susiestar

    susiestar Roll With It

    I have been making calls and doing all sorts of searches to find docs who will be more effective in helping Jessie. She just keeps getting worse and our neuro has just decided it is not his problem. :mad:

    He DID finally get his act together and tell someone to do the referral to the pain clinic. A MONTH after our appointment when I called to follow up and see why we hadn't heard from them.

    Jessie sees the pain doctor on Tuesday. THIS Tuesday!!!!!!!!:surprise: I am just hoping we don't have to go to the ER before that with out of control pain. It is approaching that level.

    I also am getting our pediatrician to do the referral paperwork to have Jessica seen by another neuro - one who is active on the dystonia society boards as a doctor treating kids with them. It will be a couple of weeks before I know on tthat one. I will let you know how the doctor appointment goes.
  2. Lothlorien

    Lothlorien Active Member Staff Member

    Well, at least neuro's referred her to someone else (indeed, not his problem!)

    Keep us updated with the Tues. appointment. I hope she settles over the weekend and it's not bad enough to take her to the ER. Poor kid!
  3. witzend

    witzend Well-Known Member

    I hope that everything will stay calm until Tuesday, and that you will finally get some answers for Jess.
  4. susiestar

    susiestar Roll With It

    Neuro is NOT referring her except to the pain place after I was insistent that she NEEDS and has a RIGHT to have the pain be controlled.

    He will probably be a PITA about us seeing a new neuro. It will be a blow to his ego, but he won't do any research to see if he can figure this out, either. I have to push through to get the pediatrician to do the neuro referral, and that is also a battle at this point.
  5. Hound dog

    Hound dog Nana's are Beautiful

    Susie you know Jesse's always in my prayers. Holding good thoughts you can get her seen by someone who knows what the h*ll they're doing.

  6. timer lady

    timer lady Queen of Hearts

    Susie, neuro docs are some of the most arrogant ~ rarely admit that a case is beyond his/her expertise.

    I'm glad that you're finding other resoures for J. Please do not walk into a neuro doctor with a diagnosis & state it out right. You have to do these things gently & guide the neuro doctor along or they will not (on my experience) work with you.

    You know this, sweetie - it's the same with a psychiatrist.
  7. ML

    ML Guest

    I'm glad your rid of that useless (sorry) quack. I know I'm being harsh but this is our precious Jess! I sure hope this next person steps up and helps get to the bottom of all this. Love and hugs, ML