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Posts posted by Tracie

  1. Tracie---may I ask what her symptoms were? Did antibiotics help prior to IVIG?


    Well her first symptoms were she was just afraid of everything

    and being away from me

    huge seperation anx..

    and she would shake her hand

    we got on abx's and they did help but we did ivig and it went away

    for about 9 months

    She got sick again and it all started again

    so we went back for ivig again and we have been good for a year with abx's

    so we just hold our breath everyday

  2. My DD has this also

    It is all part of PANDAS

    my dd will toss up her food

    because she eats to fast or has to burp

    and then she will have a hard time eating

    for about a week or so

    Do you have a PANDAS doc?

    see if you can up the abx's

    or try a different kind

    have you had IVIG?

    It has worked wonders for my dd

    we have had to do it twice

    and I would do it again if we had to.



  3. Thank you Nancy

    I think I will hold off my DD still needs to be on

    her abx's

    How is you DS at 14? does he still show signs of PANDAS

    at his age?

    Well this time last year we were with Dr.K and tonight I am sitting here on my couch a very happy mom!!

    our dd is doing very good also.. she still has a bit of anxiety whith getting sick or if something is a little out of norm

    but other than that it's all good

    I homeschooled her this year and I think that helped alot we are thinking about school next year in a smaller class

    so that will be our true test for sure..

    I pray that this time next year I will be still sitting here on my couch still being a very happy mom...

    and yes (Knock on wood)

    We're good (knock on wood!)! Signs of PANDAS? Honestly, it's a little hard for me to say since he is who he is, and we think his initial bout with PANDAS was actually back at the age of 3, though we didn't get a diagnosis until age 12! So, he's a little "quirky," unique, marches to his own drummer, etc. Whether that's because some of the PANDAS lingers, or if it's because he's developed a way of thinking, coping and behaving as a result of dealing with years of undiagnosed anxiety, I don't know.


    Thankfully, though, he's now happy, well-adjusted, in school full time, functional, friendly, excelling academically (still has an IEP for now), sleeping well, handling himself well and with maturity, problem-solving at least at age-level and usually beyond, etc. So, in our eyes, he's past the PANDAS, at least the PANDAS that disabled him and had him homebound two years ago!


    Hope your DD is doing well, also!

  4. Tracie,

    What has the year been like? Has she progressively gotten better, or has she been well since #2? I ask because we did IVIG #2 in November and DS is not as well as we would have hoped. Dr. K says wait to see, but it is hard.

    Ya it took a little time to get her back to 100%

    but not sure how long it took, she had a couple of relaps for sure with her teeth falling out

    and a cold but nothing that a up in abx's didn't take care of..

    I am sorry that he is not getting better yet..

    keep your chin up and keep talking with Dr.K

    how old is he? my DD is 7 and she woke up with this at

    the age of 4 she had so many ear infections that we lost count

    and that is what did it..

    she had been sick all the time from the age of 6 months

  5. Hello everyone,

    Well this time last year we with Dr K for my DD IVIG #2

    and I am happy to say what a year..

    she is doing great,I hate to say it out loud

    but I am :) we are on daily zith and now we are going to go down

    to everyother day through the winter,and then a little less in the Summer

    If I dont homeschool her next year.. well that will be our

    true test for sure..

    We are going to put her into some sports in the Spring and Summer and see how she does

    So for now we have it under control..



  6. So glad to hear she is doing well. How did you get there?


    we have had 2 IVIGs with Dr.k

    abx everyday of 250 of azith

    and we kept her home for school

    and kept her away from as many people and kids that were sick..

    It has been a VERY hard year BUT it will be 1 year post ivig #2 without any big time

    PANDAS flair ups on the 10th :)

    nothing that abx's could not handle..

    so we will still do this through the winter

    and then we will see what happens

    I pray that it will all work out..

    I think PANDAS will always be in our lives

    but maybe not as much or at all..

    I hate to say all of this out loud

    because I dont want it to come back and bite me..



  7. I haven't been on here for a while

    until last week or so..

    but I now know why I have checked in

    because I can come here and VENT !!

    I have lost frends,family,and jobs because of


    BUT it is all for my DD

    who is doing great


    There is hope

    and alot of stress along the way

    Hang in there everyone



  8. I have learned to be thankful for what I have each and every minute because we all know - we can awaken on any given morning and our children can be "gone" again, with no rhyme or reason. Thank you for this post that I have been reading while my son watches "Chicken Run" on my bed. He says his feet are cold. I will go now, and warm them up and hold him close, all night - yes - another thing I am thankful for - not really giving a flying fig anymore what people think and not following the advice of pediatricians regarding separation with a 5 year old. He can sleep with me if it makes him feel safe.


    Love and blessings and many, many good things for you all! 2012 will be our year. Keep fighting the good fight!


    Thank you Arial.


    Kath :)

    My 7 year old dd has been sleeping with me for almost 3 years

    If she is happy I am happy

    She will break her habit when she feels ok about it..

    So I dont listen to the Pediatricians any more..



  9. I need one in COLO A ped Doc would be nice

    and one who knows that my dd WILL need to be on

    long term abxs.. We have had IVIG twice already and doing

    great now.. but she or we need a doc that I can count on..

    She has seen Tom Smith the first time and he was so much money that it was cheeper for us to fly and stay in Chicago to see a REAL PANDAS doc..

    I have seen the list on the saving sammy web

    but I want to see if anyone has updated it..



  10. Yep the same thing here for my dd 7

    last year but I just let her go because it is her brain

    telling her to go.. but most of the time she just had a "thought" that she had to go but she really did not have to go..

    but we were already going back to Dr.k for IVIG #2 anyway and within about 1 day the bathroom problem was GONE..

    It was driving me crazy also but then I just let it go because it was stressing her out even more..


  11. I am so glad that it went great for you

    My dd she is 7 has had ivig twice with Dr.k we THINK HOPE AND PRAY that we are on the right track

    BUT I am homeschooling her this year because we think that is why she failed the first ivig..

    and I am so glad that I am she is not very happy about it BUT she also knows that as much as she loves Dr.k she never wants to see him again :)

    So we have 9 months under our belt and holding our breath eveyday

    I wish we could had been in the IVIG study..

    Where do they do it at?

    anyway keep us posted..


  12. Yes !!!! my dd who is 7 always has a flair when she is loosing her baby teeth your son needs to have the dentest put him on abxs and he needs to take them until he settles down we do 14 days at least.

    Good luck on finding a local PANDAS doc

    If they dont know about PANDAS they are not going to give you abx

    Have you talk to any of the PANDAS Dr.? Dr.k or Dr B??

    good luck


  13. I have seen posts on this forum about symptom flares effect by teeth. I need advice, opinions, experiences and don't know who to ask. My PANDAS/Lyme 8YO son had symptoms skyrocket on Saturday night. We didn't realize until Sunday that he had lost a filling in his tooth. This is the only thing that we can think of that has caused the flare.


    We took him to the dentist today and they said that they recommend either a root canal or an extraction (it is a baby tooth) as there is an additional cavity in the tooth and it is close to the nerve. They are concerned that drilling and filling may not fix it until it comes out on it's own in 3-4 years. They are concerned that it can become worse, get infected, and have to get pulled anyway.


    So, my concern is that if they are messing with a tooth nerve and there are risks with any choice and chances of infection, what would be the best way to go for a sick child. Our dentist recommended extraction, but he then referred us to a pediatric dentist as he did not know how to handle or consider the PANDAS effects. Is there anything that I should share with the pediatric dentist that will aid in our decision or anything that he needs to know?


    We are actively seeing a LLMD - on antibiotics, but haven't found a local PANDAS doctor to work with on day to day questions/problems like this.


    Thanks to everyone for any advice!

  14. I am home schooling my 7 year old this year and I love it.. her not so much but she knows that she is away from all of the kids that are making her sick and she has learned so much this year because of the fact is that everytime she has started school she got sick and then she went into PANDAS and then we would start ALL over again.. I hope to put her back into school next year.

    I have her in a program it is called cova k12 and it is also through her school district so if it dont work out for her next year I can just go through the school.

    So I would talk to the public school to see if they have a home school program

    It takes sometime to get a program worked out but once you into the swing of things

    it works out.

    I also work part time

    I hope this helped


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