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Thread: Happy 4th - and a big long ugly VENT from me

  1. #11
    pepperlc is offline INCIIDer - A Community Creator
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    I agree you need to tape it so he can see what you are going through. So many hugs.

    k

  2. #12
    trek is offline INCIIDer - A Community Creator
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    Definitely tape her-great advice and what has helped professionals see things when either of boys are not presenting certain behaviors during Dr. appts.

    Have you had EEG and blood work done on Ella recently I forget. That would be something reg.Pedi can order while you are waiting to rule out any medical issues.

  3. #13
    angeleena is offline INCIIDer - A Community Creator
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    The pandas stuff is so fitting with Ella except that we cannot remember this all coming on suddenly. It has just grown worse and worse over the years.

    she is in behavioral therapy. Today she was at the therapist's office and the therapist threw her hands up in desperation at one point because it is so difficult to deal with ella's button pushing and opposition.

    She told me point blank privately, we might just have to bribe this kid for results.

    But, she is trying to work on things with her. We have a plan sort of for inspiring ella to not attack us.

    but, still the fact remains...she needs a better (for her) mood stabilizer.

    Angi

  4. #14
    sugarsue is offline INCIIDer - A Community Creator
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    Quote Originally Posted by angeleena View Post
    The pandas stuff is so fitting with Ella except that we cannot remember this all coming on suddenly. It has just grown worse and worse over the years.

    she is in behavioral therapy. Today she was at the therapist's office and the therapist threw her hands up in desperation at one point because it is so difficult to deal with ella's button pushing and opposition.

    She told me point blank privately, we might just have to bribe this kid for results.

    But, she is trying to work on things with her. We have a plan sort of for inspiring ella to not attack us.

    but, still the fact remains...she needs a better (for her) mood stabilizer.

    Angi
    It does not have to be sudden onset. If it happened when she was a baby or toddler you might not notice. This was the case with my girls. Anyway, I'm not trying to push the pandas, I just keep going back there, like you say, so much of it fits.

    I know with my kids, I've tried bribery and it doesn't work for very long because they just can't control their actions.

    HUGS!

    Susan

  5. #15
    angeleena is offline INCIIDer - A Community Creator
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    Susan,
    I know totally....she cannot control it...and the therapist/doc both think she can control it. Very frustrating. And the doc will not test for pandas. Sooo annoying.

    Thanks for all of the info.

    I would love for it to be pandas!

    Keep reminding me!

    Angi

  6. #16
    sugarsue is offline INCIIDer - A Community Creator
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    Angie, will you remind me where you live?

    Susan

    PS... thank you for permission to keep reminding you

  7. #17
    angeleena is offline INCIIDer - A Community Creator
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    hehe.
    We are in Eugene, Oregon.

  8. #18
    PPeanut is offline INCIIDer - A Community Creator
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    forgive me for barging in.

    are there tests for PANDAS? From what I read on line it didn't seem there were any tests and that it was more of a rule out kind of diagnosis.

    We have been dealing with rage here a lot too and its so hard to take!

    Thanks!

  9. #19
    sugarsue is offline INCIIDer - A Community Creator
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    Oh yeah Angi, how could I forget?! With my parents in Corvallis so close. I know I already sent you the docs that might be useful in the area. If you are ever planning a trip to Chicago, NY, Wash DC or Connecticut, I have some suggestions for you.

    Susan

  10. #20
    sugarsue is offline INCIIDer - A Community Creator
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    Quote Originally Posted by PPeanut View Post
    forgive me for barging in.

    are there tests for PANDAS? From what I read on line it didn't seem there were any tests and that it was more of a rule out kind of diagnosis.

    We have been dealing with rage here a lot too and its so hard to take!

    Thanks!
    Hi there... This might be the best place to look. This website was put together from all the parents and doctors who have been working on this condition and you should be able to get a good start here. It has a page for diagnostic tests. You are right, there is not yet a test but a group of tests along with clinical diagnosis. Putting together a list of symptoms and possible onset in association with strep is very helpful.

    http://www.pandasnetwork.org/index.html

    Main problem is finding a doc who will listen. Here is a list of docs who parents have had good experiences with.

    http://www.latitudes.org/forums/inde...hl=doctor+list

    There is also a test called CamKII that is still in research but is hopefully close to proving that it is a diagnostic test. It costs $400 and is not yet used for diagnosis but might help you if you were on the fence or convinced yourself and just needed to know. Both my dd's fell into the pandas range and I was lucky that our Ped agreed to treat based on this test.

    Susan
    Last edited by sugarsue; 07-07-2010 at 09:06 PM. Reason: spelling

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