Jump to content
ACN Latitudes Forums

lulu4

Members
  • Posts

    45
  • Joined

  • Last visited

  • Days Won

    1

Reputation Activity

  1. Like
    lulu4 reacted to qannie47 in new article on PANS from Stanford Medicine   
    I am just so pleased to see that the medical community is starting to accept the idea that the autoimmune system can be connected to neuropsychiatric symptoms.....
     
    I am optimistic that as the medical community moves forward, how we treat neuropsychiatric symptoms will be forever changed in many positive ways.
  2. Like
    lulu4 reacted to searching_for_help in Pandas Physicians Network website - who knew?   
    I contacted NIMH for info on PANDAS for our doc. They suggested this website:
     
    https://www.pandasppn.org/
     
    I research PANDAS daily, and never ran across this site before. Was anyone else aware of this?
  3. Like
    lulu4 got a reaction from Ginah in First ivig next week   
    Matter of fact attitude and calm reassurance helped our daughter (12 yo) through her fear. Lots and lots of liquid is critical. Yes, start that liquid a day or so before, and keep pushing liquids for days afterwards! Our daughter wasn't crazy about Gatorade, but did drink a few, but drank a lot of LifeWater. She probably had about 6 bottles per day during the 2 day procedure. The following day she slowed down a bit and ended up with a horrible headache. I don't really subscribe to the headache is a good sign thought. The dr. increased her pain meds for 24 hours and we went right back to pushing those fluids. She was on high fluids for a week. When she went back to school, I sent her with one or two drinks per day for a week and talked with her teachers about allowing her to have them to prevent headache. They were very cooperative and my daughter did not get any more bad headaches...Some initial signs following ivig that there was some progress included her willingness to go downstairs by herself (which previously she was scared to do) and some increased independence. However, there was not a lot of progress within the first four months. After that, the progress became rapid. We are 10 months post ivig and she is doing so well. Not 100%, but probably 95%. She and our family are so different than we were a year ago. We are so grateful. I wish you the best with your son! I hope the procedure goes smoothly and that ivig does for him what it did for my daughter. Blessings!
  4. Like
    lulu4 got a reaction from beeskneesmommy in "Killing a Fly with a Nuclear Bomb!   
    It can depend on what part of the country you live in as well. Some abx are more effective in certain geographical regions. Amazing stuff. I wonder how many docs know that. Our PANDAS specialist told us.
  5. Like
    lulu4 reacted to T_Anna in The Kvetching Ring - Interesting Article   
    So a family member pulled me aside during my son's celebration yesterday. He said his wife, a social worker, is really good and can "really" help with DS's OCD/issues. "Would it be OK, if she walks over to the house now?" I'm not close with this woman, AT ALL (think cold war), and had left my personal troubles at home with DS (unable to attend) so that I could concentrate and focus on being happy for my middle son. That was the plan and DS15 was the pone promoting the agenda (he texted "please spend time with DS13 and be there for his special day").
     
    It was an inappropriate offer and at an inappropriate time/day/place. I complained to a close friend who lost her husband to cancer a few years back and she told me about this theory of the "Kvetching Ring" I have printed it for all my whole family, and figured it might be helpful for fellow PANDAS sufferers.
    --------------------------------------------------------------------
    ttp://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407
     
    How not to say the wrong thing
    - April 07, 2013|Susan Silk and Barry Goldman

    It works in all kinds of crises – medical, legal, even existential. It's the 'Ring Theory' of kvetching. The first rule is comfort in, dump out.

    When Susan had breast cancer, we heard a lot of lame remarks, but our favorite came from one of Susan's colleagues. She wanted, she needed, to visit Susan after the surgery, but Susan didn't feel like having visitors, and she said so. Her colleague's response? "This isn't just about you."

    “It's not?" Susan wondered. "My breast cancer is not about me? It's about you?"

    The same theme came up again when our friend Katie had a brain aneurysm. She was in intensive care for a long time and finally got out and into a step-down unit. She was no longer covered with tubes and lines and monitors, but she was still in rough shape. A friend came and saw her and then stepped into the hall with Katie's husband, Pat. "I wasn't prepared for this," she told him. "I don't know if I can handle it."

    This woman loves Katie, and she said what she did because the sight of Katie in this condition moved her so deeply. But it was the wrong thing to say. And it was wrong in the same way Susan's colleague's remark was wrong.

    Susan has since developed a simple technique to help people avoid this mistake. It works for all kinds of crises: medical, legal, financial, romantic, even existential. She calls it the Ring Theory.

    Draw a circle. This is the center ring. In it, put the name of the person at the center of the current trauma. For Katie's aneurysm, that's Katie. Now draw a larger circle around the first one. In that ring put the name of the person next closest to the trauma. In the case of Katie's aneurysm, that was Katie's husband, Pat. Repeat the process as many times as you need to. In each larger ring put the next closest people. Parents and children before more distant relatives. Intimate friends in smaller rings, less intimate friends in larger ones. When you are done you have a Kvetching Order. One of Susan's patients found it useful to tape it to her refrigerator.

    Here are the rules. The person in the center ring can say anything she wants to anyone, anywhere. She can kvetch and complain and whine and moan and curse the heavens and say, "Life is unfair" and "Why me?" That's the one payoff for being in the center ring.

    Everyone else can say those things too, but only to people in larger rings.

    When you are talking to a person in a ring smaller than yours, someone closer to the center of the crisis, the goal is to help. Listening is often more helpful than talking. But if you're going to open your mouth, ask yourself if what you are about to say is likely to provide comfort and support. If it isn't, don't say it. Don't, for example, give advice. People who are suffering from trauma don't need advice. They need comfort and support. So say, "I'm sorry" or "This must really be hard for you" or "Can I bring you a pot roast?" Don't say, "You should hear what happened to me" or "Here's what I would do if I were you." And don't say, "This is really bringing me down."

    If you want to scream or cry or complain, if you want to tell someone how shocked you are or how icky you feel, or whine about how it reminds you of all the terrible things that have happened to you lately, that's fine. It's a perfectly normal response. Just do it to someone in a bigger ring.

    Comfort IN, dump OUT.

    There was nothing wrong with Katie's friend saying she was not prepared for how horrible Katie looked, or even that she didn't think she could handle it. The mistake was that she said those things to Pat. She dumped IN.

    Complaining to someone in a smaller ring than yours doesn't do either of you any good. On the other hand, being supportive to her principal caregiver may be the best thing you can do for the patient.

    Most of us know this. Almost nobody would complain to the patient about how rotten she looks. Almost no one would say that looking at her makes them think of the fragility of life and their own closeness to death. In other words, we know enough not to dump into the center ring. Ring Theory merely expands that intuition and makes it more concrete: Don't just avoid dumping into the center ring, avoid dumping into any ring smaller than your own.

    Remember, you can say whatever you want if you just wait until you're talking to someone in a larger ring than yours.
    And don't worry. You'll get your turn in the center ring. You can count on that.

    Susan Silk is a clinical psychologist. Barry Goldman is an arbitrator and mediator and the author of "The Science of Settlement: Ideas for Negotiators."
×
×
  • Create New...