GRRRRRRR! Update on Jessie

Discussion in 'General Parenting' started by susiestar, Oct 23, 2009.

  1. susiestar

    susiestar Roll With It

    I am putting this update here after the last post was moved here. If it should be in watercooler please move it.

    Jessie's shaking is not better. The neurologist finally rx'd lorazepam (ativan) to be taken ever 4-6 hours.

    NO WHERE does it say that she should only take 2 tablets a day. No. Where.

    I called to get a refill for a month's worth because it is helping. Got a HUGE rant from the doctor about people wanting their kids to get addicted.

    I stood up and said "Wait a minute here! The ONLY reason I said that 30 pills are not enough is because YOU told me, and wrote on the prescription, that she should take it every 4-6 hours. NOWHERE did YOU put that she should only take 1-2 doses a day.

    I am NOT a doctor. I ASKED you about medications. I did NOT tell you what to prescribe. This medication HELPS. It is the first one we have used that seems to lessen the intensity of the shaking."

    He did not want to listen. He is actually being a real jerk about it. HE didn't find a quick answer so he doesn't want to handle it.

    We have added a banana a day to her diet. Mandatory. She isn't fond of bananas but they are helping some. They seem to have stopped having every muscle that even her clothes touch turn to iron. Late at night several times she has had her muscles just turn to iron anywhere seh was touched. I felt it happen when I lightly touched her arm with my hand. The kind of touch she would not have normally registered.

    At least the bananas are working for that, for now.

    She sees the endocrinologist on Nov 18. I have no idea how we will make it that long. We may end up with emergency room trips, I just don't know.

    I wish her docs would worry more about getting the pain under control than about addiction. While I do NOT want her to be addicted, I do think the docs are not aware enough of how painful this is.

    The Superintendent of teh school district that oversees her administrative stuff (absences, etc...) has given her a semester off. No problems, very understanding. I started crying when seh offered it with-o wanting me to send doctor reports, lab work, etc...

    There is no way she can do schoolwork right now. Constant pain can turn your brain to mush.

    Thank you all for the continuing prayers and good wishes for Jessie.
  2. mstang67chic

    mstang67chic Going Green

    I'm sorry the doctor is being such a donkey (no offense to Star's donkey). The only thing I would say is document, document, document. Make copies of the rx's before you get them filled, save the bottles, make a log of calls....who/what/when/regarding/results....the whole shebang. If anything comes back on you, you've got proof of whatever. If you end up filing complaints...again, you've got proof.

    I'm glad you've found something that works though, even if it's a little. It still hoovers but it's better than nothing.
  3. KTMom91

    KTMom91 Well-Known Member

    Are there other potassium-rich foods Jessie likes better? Glad you found something that helps her.
  4. gcvmom

    gcvmom Here we go again!

    The American Heart Association lists these as high-potassium foods:

    • Dried fruits: raisins, prunes, apricots, dates
    • Fresh fruits: bananas, strawberries, watermelon, cantaloupe, oranges
    • Fresh vegetables: beets, greens, spinach, peas, tomatoes, mushrooms
    • Dried vegetables: beans, peas
    • Fresh meats: turkey, fish, beef
    • Fresh juices: orange
    • Canned juices: grapefruit, prune, apricot
  5. Shari

    Shari IsItFridayYet?

    For crying out loud, she's a young girl in SEVERE pain. Worry about the addiction later!

    I am so sorry you are still fighting this. Are you on the cancellation list at the neuro?
  6. GoingNorth

    GoingNorth Crazy Cat Lady

    Susie, is there anyway you can get Jessie into a Pain Clinic? They are very good at differentiated people who need management of severe pain and those who are seeking drugs.

    The downside to pain clinics that you have sign a commitment to only get your medications through them. They are concerned about doctor shopping by addicts.

    One other thing is that if you are prescribed a specific doseage of medications, you have to use that doseage even you feel fine. Ramdom drug tests to insure drug compliance is the norm.

    I remember husband getting in trouble with his pain mgmt team when a urinalysis indicated that he was not taking his medications as surprised. Not abusing them, but rather not taking them to schedule so that when he took them they didn't work as well as they should'
  7. timer lady

    timer lady Queen of Hearts

    Susie, doctor's are notorious worriers about addiction to medications ~ especially pain medications.

    My neuro doctor explained that if my body is truly in pain it will utilize the medication with very little concern about addiction. He's not worried, nor are my GP, PTs, therapist, etc.

    I know the FDA worries about these types of things AND all federally controlled substances prescibed have to be reported monthly. If a doctor has a patient in pain & prescibes regularly there needs to be an explanation attached with the report.

    I like GVC moms list of potassium filled foods; I eat lots of dried fruits, love mushrooms & tomatoes.

    Hope J is feeling better soon & you find an answer quickly.
  8. JJJ

    JJJ Active Member

    I hope she is feeling better soon. I can't imagine constant pain at her age. I hope the docs figure it out soon.
  9. ML

    ML Guest

    I think it is unconscienable to allow a child to suffer this way. And how offensive to suggest you WANT your child to become addicted just becaues you are seeking ways to stop her pain. I don't understand it at all. Please tell Jess how proud of her we are and that we are all praying for answers. Love to both of you.
  10. rlsnights

    rlsnights New Member

    In your earlier thread you said that your daughter's symptoms looked a lot like dystonia. Did you do any research into the types and causes of dystonia? If not, here's a link to a very thorough and comprehensive website about the many forms of dystonia that may be helpful to you.