Jessie to the neurologist

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

  1. susiestar

    susiestar Roll With It

    husband and I are taking Jessie back to the neurologist tomorrow. I have coached her on how to express herself, show her pain and NOT stop her tremors.

    I hope that he can understand how awful this is for her and figure some way to HELP. It iwll probably be easier to get him to do something because we have her scheduled for a psychiatric evaluation. That will probably make him happy.

    Now we have to figure out how to get him to treat the pain. Cause he does NOT want to.


    Thanks for all the support - you are wonderful!
  2. Hound dog

    Hound dog Nana's are Beautiful

    saying a prayer and keeping body parts crossed.

  3. trinityroyal

    trinityroyal Well-Known Member

    Sending prayers
  4. gcvmom

    gcvmom Here we go again!

    Let us know how the appointment goes! I hope the doctor listens and does something to help her.
  5. Star*

    Star* call 911


    Any word yet?

  6. susiestar

    susiestar Roll With It

    Just back from the doctor. Our girl was AWESOME!!! No hiding it, no happy "I'm fine", very much like a kid with a painful problem that is pretty bad. He really SAW what was going on.

    He even commented on how much worse it has gotten (considering she was working hard to suppress almost all of it last time!) and how we need to figure out how to stop this. YES!

    The rest? Some good, some bad. Better than I really expected.

    Jessie is unhappy with him because she stayed on the exam table and the chairs were on the opposite side of the room. Jessie could have taken the chair next to me, but husband was with us. Even then she could have. BUT husband would then have taken the doctor's stool and tried to hack into his computer.

    NOT a good thing.

    He DID ask her a number of questions. But he asked me more. He also had a LOT of mis-information. We did a 20 minute video EEG. He kept saying it was an extended EEG.

    Then he thought we did 2 EEGs and he needed to order an MRI of her brain.

    FINALLY got that organized. It was a mess.

    He cannot see a neurological reason for this. Mentioned a psychiatric condition called "conversion disorder" where a trauma happens and the body handles it with strange physical symptoms. I think that he wants to give a psychiatric reason for things because he is also certified as a child psychiatrist.

    He said that since it started in early July, she would have to have had the trauma in May or June. No trauma we know of. But if we had gone in with-o having a psychiatric assessment scheduled he would have gotten stuck on that. whatever.

    He is switching her from ativan (lorazepam) 2 times a day no less than 4 hours between doses to klonopin .5mg twice a day. It should last longer and do more to help stop the shaking.

    He admits he has no idea what is going on. Has never seen this. Ever. At least he admits it.

    We are getting a referral to pain mgmt - the Children's hospital he is affiliated with has a pediatrician pain clinic!!! I am so thankful. I hate that she hurts and I hate that none of the docs seems to really want to treat the pain.

    He may order and extended EEG was very upset with the EEG place because the written orders for her EEG were for an extended one. Not mad at me though.

    We are also changing Jess from Keppra to lamictal. We have a starter pack with the melting tabs to begin with. Then he will rx the generic form. We will not step down with the keppra until the lamictal is near the level he wants.

    He was suprised when we blew off the blood work as no big deal. Even Jessie said "That's no problem."

    Anyway, that is where we stand now.

    Jess doesn't like that he had his back to her much of the time. MUCH of that time he was ordering rx's, making notes, and looking up some info. So he was looking near me, but not talking.

    We see thetdoc on the 5th and the endocrin doctor on the 18th. Not sure how many other appts we will have before then.

    Thank you all so much. I could feel you there supporting me when the doctor would give me that skeptical look that says "hysterical mommy blowing things up so a zit becomes huge and gangrenous and needs amputation of the nose".

    When I continued to ask questions and want full answers he finally settled down. Nyah nyah nyah!!! See if one piddly new doctor can hold out against the Power of the Board!!
  7. gcvmom

    gcvmom Here we go again!

    :D That's great to hear he his taking this seriously! Hope the klonopin works for her -- FWIW, our neuro rx'd it for difficult child 2's movement disorder, too. But it just zonked him too much so we stopped it and now he's mostly remitted so it's not a big issue anymore.

    Sounds like you are finally headed in the right direction and have people's attention. I'm SO happy and relieved for you and Jess. Tell her to hang in there -- she's doing an amazing job and is SUCH a trooper. The answers are out there, it's just going to take more time and persistence (and we KNOW how good you are at that!).

  8. KTMom91

    KTMom91 Well-Known Member

    So glad the doctor listened! Hugs to both you and Jessie.
  9. Steely

    Steely Active Member

    Hugs, I am glad he is taking this more seriously! Yay!!!!
    Sending you and Jessie much strength for the next couple of weeks. I know you will get to the bottom of this.

    (And what do you mean husband would have hacked into his computer? I am confused.?)
  10. mstang67chic

    mstang67chic Going Green

    Ok so now I don't think the doctor is a TOTAL moron. Did he finally give her the note for school?

    Glad things are progressing though. And it can't hurt to get the evaluation....the brain does some really strange things so you never know. I hope this gives her some relief from the pain. I would think that having the doctor really see what's going on has to be a little bit of an emotional relief for her.
  11. everywoman

    everywoman Active Member

    Yeah. I'm so glad he listened and was concerned this time. I hope ya'll find some answers soon.
  12. Wiped Out

    Wiped Out Well-Known Member Staff Member

    So glad he is taking things more seriously. Praying daily for Jessie. Hugs to you both.
  13. GoingNorth

    GoingNorth Crazy Cat Lady

    I tried Klonipine for tremor from my BiPolar (BP) medications. In my case I get muscle spasms along with that.

    Klonopin does work well for spasms and stuff, but it makes me walk into walls. I wound up on Cogentin, which though it blurs my vision, does work as a PRN (with Benadryl) when the movement stuff acts up.

    I mentioned Jessie's issues in passing to a friend of mine who has MS. She suffers from tonic/clonic spasticity in her leg due to the MS.

    She suggested asking the doctor about a muscle relaxant called "baclofen". It works for her much better than the usual Flexeril and beyond drowsiness doesn't seem to have other side effects. She takes it daily and before bed, and said that after the first couple of weeks the daytime wooziness wore off.
  14. Hound dog

    Hound dog Nana's are Beautiful

    YES!:D Way To Go Jess!!

    I don't know what they're teaching docs in medication school these days.......but like I said......I swear the stoic mentality will be shooting yourself in the foot everytime. Stupid.....but that's just the way it is.:tongue:

    Hope the new medications help some.......and you are on the path to some answers.

    Oh? And what is all this mix up now days with lab, radiology, ect reports and doctor orders? I know it's not just you guys, but LOTS of people. It's getting outragious! And more than a little scary. I mean how can a doctor adequately treat a patient when the reports he's getting aren't accurate (and sometimes not even the right patient) and orders he's writing aren't being followed by personel doing the testing ect.:mad:

    This trend is on a very steep upward swing. Disturbing when a patient has to do all the follow up to make sure everything is followed thru and done acurately.