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Iowadawn

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Everything posted by Iowadawn

  1. Iowadawn
    Ditto on the Vistaril, an 1956 first generation (H1) antihistamine. Our psychiatrist removed ds13'snpsych drugs the last time as an inpatient. He was sent home with a script for Vistaril. It has worked the best of anything for anxiety. Reading up on it a bit, one thing that is mentioned that it is beneficial if the anxiety has an organic origin. The whole benefit with decreasing Bibb adds an additional reason why I see it helping. Dawn
  2. Iowadawn

    Good to see your post. How are you doing with the breast cancer? It has not been an easy ride here at all. I forget if you are going to Piccirillo as the LLMD. If not, whom, may I ask. There are a few of us old timer PANDAS parents around. Seems that most have turned out to be lyme. Ugh. We keep seeing rashes pop up and leave as we treat bart for nearly a year. PM when you can. Dawn

  3. Iowadawn
    Hello all. We are really tossing around the idea of going out east. The old tmers on the forum are a bit familiar with our ds13 PANDAS/tickborne infections (B,B,&. We have never had, what I would call, a "thorough" medical workup and wonder if turning over another stone with one of these docs should be in the mix. What does Dr. T have to say about congenital lyme. A question for the PANDAS/Lyme parents. I know he has been pretty cool to it in the past. Our son's case has been incredibly difficult. We have been to Dr. K. We see a LLMD here in Iowa. I am tired of thinking. Help me out. Thanks. Dawn
  4. Iowadawn
    Very different presentations here. You have the appt. Dr. L thinks the eval is warranted---go for it. Best wishes. Dawn
  5. Iowadawn
    DITTO--push the fluids starting a couple days ahead. DAwn
  6. Iowadawn
    Bartonella have proven to be the stubborn bug for our ds13.
  7. Iowadawn
    Can anyone report on this presentation? I so would have loved to have jumped on a plane and headed west!! Dawn
  8. Iowadawn
    Thanks for all the input. The family has had a consult with Dr. K and the dx is probably PANDAS. They are working with him right now and will have a treatment course in the next couple of weeks. Dawn
  9. Iowadawn
    About 50% on an Iowa BCBS. It is an excellent policy (overall--not so for this.) Dawn
  10. Iowadawn
    For the last few weeks we have been going through this annoying super sensitivity to sound and the mimicking bleck. Our Ds13 has had a some sensitivity to sound issues, but they have been more off than on--until recently. Oh, we have added whistling to the tic/OCD/anxiety repetiore, too! It had been really quiet in "tic-land" here, until these two things started up. Earplugs---anyone?? Dawn
  11. Iowadawn
    I can so empathize with your frustration. My husband painted the perfect picture last night; we think we have some plan figured out or that it looks really promising and it turns out to be like sand flowing through your fingers. And it's gone. Just warm thoughts and a prayer is the only thing to offer in addition to what others have said. Dawn
  12. Iowadawn

    How is Joe doing? We are post IVIG 5 weeks. We started trending more positive a about week three. Been here before so many times. School's out Thurs. Dawn

  13. Iowadawn
    Well put, Kimballot! Santa, Tooth Fairy, a god---This is not about a belief system. Well said.
  14. Iowadawn
    IMHO-There is something way more sinister or calculated about some of these docs/hospitals not, at least, getting educated. In years past I might understand how slow some illness got around. The era when an institution like Mayo was a premiere place to go when your local doc and others nearby had no more answers. Not any more. A few clicks of a keyboard, a quick call, fax, email and a doc can be in touch with the latest & greatest experts and information--IF they wanted to be informed. Follow the money--again--MHO--drug companies have A LOT to lose if "the new antipsychotic is an antibiotic." (I love this phrase, whoever on the forum coined it!)And Advil!! A few companies that are into selling IVIG have the most to gain. And the companies that have the most to lose in the way of psychiatric meds probably are not the ones peddling IVIG. I just think this is a conspiracy, Man!! All my humble opinion, only. Dawn
  15. Iowadawn

    Pandasmex-I perked up when I read that your son has been in Rogers. We went thru the screening. We were extremely disappointed--they said impulsivity/aggression was an issue and didn't believe Rogers was the place for him. He NEEDS intensive CBT. I would love to hear more about your Rogers experience if you feel comfortable sharing. Our 13 son is a PANDAS/Lyme . Dawn

  16. Iowadawn
    Yes, Math is the issues and source of much anxiety. Our son struggles with this subject. A very PANDAS thing. Dawn
  17. Iowadawn
    Whew-Hoo!!!!! Your case sounds similar to ours. Our boy just turned 13, too! A toast & Amen to a year of IVIG for your son!! Dawn
  18. Iowadawn
    Hello all- I am in touch with a family in Iowa who has a 20 yo daughter in Tulsa, OK. They gave me a brief hx (going back quite a ways) + for several strep infections, current tonsil problems, flairs with mono & other infections) and current sxs and have been investigating PANDAS. Highly suspicious and it certainly needs ruled in or out. I am trying to steer them in the right direction---pretty much telling them to get to one of the main PANDAS docs (they seem willing to travel). Can you PM me with your insight on the best doc with her age. This girl has had to drop out of college. Need a little input. I have been getting them connected to websites so they can get up to speed. PM me. Thanks. Dawn
  19. Iowadawn

    May I ask whom your LLMD is? We have the bart issues here, too.

    Dawn

  20. Iowadawn
    Hello all- I know many forum users bounce back & forth between the PANDAS & Lyme forums. I have a longer version of this post on the lyme forum. I am in need of feedback on the Lyme Disease Center at Columbia University & the 2 day evaluation program they have. PM me if you have been through this. Dawn
  21. Iowadawn
    Hello all- I know many forum users bounce back & forth between the PANDAS & Lyme forums. I have a longer version of this post on the lyme forum. I am in need of feedback on the Lyme Disease Center & the 2 day evaluation program they have. PM me if you have been through this. Dawn
  22. Iowadawn
    Hello all- I know many forum users bounce back & forth between the PANDAS & Lyme forums. I have a longer version of this post on the lyme forum. I am in need of feedback on the Lyme Disease Center & the 2 day evaluation program they have. PM me if you have been through this. Dawn
  23. Iowadawn
    Hello- You forum folks were wonderful in helping me gather some information recently--I need some more. This time from any family that has been through the Lyme Disease Center at Columbia University and Dr. Brian Fallon. We asked our DS13's psychologist to get in contact with the docs at the Rothman Center of Neuropsychiatry & Dr. M, et. al. SHe spoke directly to Dr. M to discern if this program would be beneficial. The conclusion Dr. M had was we would be better served at Rogers Hospital, and also At Columbia for the lyme . I need some Feedback and also if you could PM me about the financial part of a trip like this. I see they want payment up front. Two days of evals & tests, etc. can not be cheap. Dawn
  24. Iowadawn
    The basal ganglia is involved.
  25. Iowadawn
    Our psychiatrist has it as a prn med for ds13 agitation/aggression now. NOT impressed in the least. He cautioned us about the snoozy side effects----HA!--I have a feeling this will go in the abort pile. Crossing our fingers the positive stuff from IVIG this weekend will continue. Dawn
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