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Posts posted by Doug

  1. Doug, you mentioned this in the "unexpected turn of events" post:


    "Also tell your Doc that PANDAS has just got into the journal of Pediatrics

    for info on it."


    Do you have a link for that article.


    Did I miss that somewhere along the line here? I just tried searching but was unsuccessful....could be me :unsure:







    Hi Kara sorry I did not see your post but I think you found it is on the pandasnetwork.org that is also a awesome place for info also.. thanks Tracie

  2. This Forum WILL be your Doctor

    It has helped everyone that has been on here

    including us.

    There is a list of Doc's that are PANDAS Doc's

    on here I think at the top, find one and call them

    Dont mess around with a Doc that dont know anything about

    PANDAS it is just waisting time.

    We have been to Dr.k twice but I know therre are alot more now

    who are all doing what they can for our kids

    I am sorry..

    Just remember that he CANNOT control this... my Daughter started when she was 4

    she is now 7 and as for now her PANDAS is gone



  3. Hello everyone

    I have not been on here for a while

    but we are on IvIg # 2 from Dr.k and all is going good so far

    we had it in Feb

    Anyway I just wanted to let you all know that we took our DD out of first grade

    this year and I am home schooling her and I am doing the k-12 program and it is

    very easy to follow if anyone was wanting to go that direction.

    I am

    so very calm as far as school goes because I dont need to explane to anyone about

    PANDAS !!

    she has a few kids that she can play with after school that understand that if they are sick

    that they cant be around her so that is nice..

    We will see what happens next year.



  4. Hello Everyone, Lauren is now 7yrs old and is 4 1/2 months post second IVIG, she has been doing great, until 3 weeks ago, we think it was a loose baby tooth and a new tooth coming in. We have been giving her a 250mg Azithromycin every other day " She weighs just 43 lbs " She started having mild seperation anxiety and and worries. We started daily Azith and it calmed down we did this for 10 days, then it came back so we did this again for 14 days and it went away. Now we stopped and went back to every other day and once again it appears to be coming back. We doubled based on Dr. K's advice. I am wondering if we need to keep her on a full dose for longer or a different antibiotic? Does anyone have any thoughts.

    Take Care, Doug Patrick

  5. Tracie,


    I am so sorry. You recent PMs to me were so positive. Prayers and hugs and health to you!


    from Michigan

    Thank you Mary..

    the weird thing is that she is NOT sick???? at all

    It might be her loose front tooth that is the only thing we can think of

    but it is so off and on.. right now as I am sitting here on the computer she is down at the neighbors house catching bugs...

    she could care less about where I am.. so that is good we will just need to watch and see

    I am giving her 250 mg of azith everyday for 10 days per Dr.K

    then we will see.

    I hope your Mary is doing ok.



  6. Oh Tracie-


    I am SO with you. We have been in a "bump" since January :(

    I am trying so hard to stay positive, but it does wear you down.

    Just remember, you have gotten her well before, you can do it again.

    Hang in there!



    Thank you.. we are on our second ivig..

    I know it works... and she is doing so much better

    but it's the little things that freek us out

    she say's it's not PANDAS.. but I think she would say that

    because she dont want to have ivig done again...

    but she would know if it was PANDAS again..

    I pray I pray for all of us..

  7. I've been trying to understand biofilms - the slime that forms around colonies of bacteria. It's a big issue in lyme because once bacteria forms a biofilm, you can hit it with 1,000 times a normal dose of abx and not make a dent. I found this link and though some of my geek Pandas friends might find it interesting. It's VERY long. But toward the middle, it starts to talk about how pulsing antibiotics, rather than taking lots and lots every day, can erode away a biofilm. For anyone who may be struggling with any chronic infection, some good info...



    WOW what a great link My DH will love reading this... I even read most of it..

    We have has 2 HD of ivig with Dr.K and we are on azith 250 every other day for a year

    would that be pulsing??

    I know it all started with her ears.....:( she had so many ear infections...



  8. When my dd started with the food OCD we would just feed her what she wanted...

    and most of the time it was junk.. But she was eatingI bought her some pediatric protein drinks

    chocolate... she would drink them all down without a problem...

    someday's that would be all she would drink/eat..

    IVIG has helped all of that for her.

    I am sorry I hope he feels better soon...


  9. Our pediatrician has always pushed honey for coughs...and it works!

    Yep honey works... not all night but long enough for my dd to get to sleep

    and I agree with you I thought my dd just had a BIG TIME sweet tooth

    but mabey her body is on to something.. I just make sure she brushes her teeth

    more.. I am not worried about her weight because she weighs nothing as it is..

    ( I wish that was me :)

    my dd will do anything for Chocolate.....

  10. my PANDAS kid passed out in the office after receiving these vaccines. A week later, massive stomach cramps, fever, diarreha, and the beginning of a downward mental spiral that has not returned to previous baseline 3 years later. I believe it was the overload on the system. If i could take it back, I would have never done it. I have felt guilty, angry etc.. My Youngest, nonPANDAS, was due for these vaccines this year. We discussed each indivdually, and found no reason to administer them. The risks of the vaccine seemed to outweigh the chances of him actually contracting these diseases at this time. We will revisit meningitis when he goes to college, as that seems to be the highest risk environment for this disease.

    I did the same thing with her shots.. she hates them so bad so her doc said well we can combind them and just get it all done with.. I wish I could take that back also.. but I was thinking about my dd.. But I think she was already starting PANDAS but I can't remember because we did not know at the time about PANDAS..



  11. Find a PANDAS doc

    don't mess around with local Doc's if they don't believe you

    you will just waist time and money we went to dr.k also

    he does ivig and knows what he is doing. Dr.T is very smart and will tell you what tests to run,and he will get you on the abx's but I dont think he does IVIG

    I have read that dr.B is also good

    get ALL the blood tests done even the one for lymne.. you just never know


    stay strong


  12. Hi Everyone,

    I am wondering if anyone can advise me on the steroid burst and its side effects and what to expect. We are planning on doing the IVIG next month and the doctor recommended steroid burst to confirm diagnosis of PANDAS and to alleviate symptoms. I am very new to this, as my son was only diagnosed 10 days ago so any info. would be appreciated.


    Also, Tracie, thank you so much for your post. It was VERY helpful! I would like to call you this week if that is okay.


    Oh yes call anytime:)

    The steroid burst just helps to settle things down

    It made my dd very hypper that was about it

    now after ivig he will give you a rx for a steroid

    to help the stuff that comes with the day 2..


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