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eljomom

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Posts posted by eljomom

  1. So here i am with orders for a bunch of bloodwork for my daughter. And wondering, does it really matter what the tests show? I mean, if the myco p and strep and everything is negative, the docs will still say that there's something there ... so then come the antibiotics. And with zithromax having such anti-inflammatory properties, maybe that is what is helping these kids, and it's NOT because it's eliminating some "hidden" chronic infection????? Cuz from what i am reading, it seems like soon after coming off the abx, kids get worse again. Bottom line---if the doc thinks it's pandas....isn't the treatment all the same "crapshoot"---pardon my wording here? I'm just so overwhelmed and confused. I really don't want to force my daughter into a pandas dx if it's really just Tourette's/ocd/anxiety. Ugh......

  2. what abx did your ped. try...just curious?

     

    I can't explain to you the science, or why things work - but our pediatrician did the same thing - a trial of 30 days abx (7 months after the last active strep infection!!). The difference was amazing - within 10 days the violence was gone, and within 14 the rages were manageable again. Was he cured in the course of 30days? No - but he did show such a significant improvement that it confirmed to our doctor that we were likely dealing with PANDAS. We've been on abx for 10 months now - and are about 85% back to normal (we did get strep 2x during that 10 months)

     

    And for the record - my son's bloodwork has all come back completely normal...even when it was taken immediately after a POSITIVE culture.

  3. Just heard back from ped. that the antidnase titers were "negative" and therefore she has a tic disorder. I told him what I'd been researching about pitands, etc. and he said there would be no harm in doing 3 weeks of antibiotics. I told him we should get bloodwork done first, and that i'd consulted with a specialist, and he said to just fax him what tests to run and he'd do it.

     

    So, I've been e-mailing w/Dr. T, and he wants to do a phone consult. I thought he'd order the bloodwork first, so we knew what we were dealing with, but i just told him ped. is willing to order,etc. and he said we need to have consult prior to ordering tests. Also said to go ahead and start antibiotics, that they wouldn't affect tests. I have apt. with Dr. Latimer on dec. 23, but want to get the ball rolling.....

     

    What the heck do I have the ped. put her on? Strep titers were normal. She had walking pneumonia in march (myco p??), and high fever in june (not likely strep) --that's what sent her over the top with tics.

     

    Also, if this is autoimmune at this point, still not understanding why in the world antibiotics will help? If the strep a year or so ago started the autoimmune process, and myco p, viruses are now causing the blood brain barrier to be breached, and she's not infected, then why antibiotics? I hit this same replay button in my head a million times a day......yet i still want to try antibiotics!!!

    Thanks!

  4. Just heard back from ped. that the antidnase titers were "negative" and therefore she has a tic disorder. I told him what I'd been researching about pitands, etc. and he said there would be no harm in doing 3 weeks of antibiotics. I told him we should get bloodwork done first, and that i'd consulted with a specialist, and he said to just fax him what tests to run and he'd do it.

     

    So, I've been e-mailing w/Dr. T, and he wants to do a phone consult. I thought he'd order the bloodwork first, so we knew what we were dealing with, but i just told him ped. is willing to order,etc. and he said we need to have consult prior to ordering tests. Also said to go ahead and start antibiotics, that they wouldn't affect tests. I have apt. with Dr. Latimer on dec. 23, but want to get the ball rolling.....

     

    What the heck do I have the ped. put her on? Strep titers were normal. She had walking pneumonia in march (myco p??), and high fever in june (not likely strep) --that's what sent her over the top with tics.

     

    Also, if this is autoimmune at this point, still not understanding why in the world antibiotics will help? If the strep a year or so ago started the autoimmune process, and myco p, viruses are now causing the blood brain barrier to be breached, and she's not infected, then why antibiotics? I hit this same replay button in my head a million times a day......yet i still want to try antibiotics!!!

    Thanks!

  5. My daughter had a sudden onset of tics,she went from about 3 mild ones to over a dozen now. Looking at her records i just picked up, she had walking pneumonia (myco p. was in "?" on her chart) this spring, probably right around when first tics started. In june, high fever, and within a week, the dozen tics, that are still going strong now 4 months later. ASO was negative, and it took 2 docs to even just get one to run that.

    Would you mind telling me what pandas expert you were with that told you about myco. p.?? I am wondering if it's Dr. T, as he seems to have a special interest in that. I'm considering consulting with him, but also don't want to "force" my daughter into a pandas diagnosis.

    I am sorry about your daughter and her tics--but I can totally relate. I see people stare at her at the store. Four months ago, people stared at her because she's so stinking cute, and now they stare because of her tics.

    Thanks for sharing.

  6. Just wondering if you can explain how they can tell the difference between pandas tics and tourette's tics based on the cunningham test? This is what I'm trying to figure out for my daughter...

    thanks,

    wendy

     

     

    Saw Dr L last week to go over my dd ( 8) scores. Cam 157. ASO was 25 ( yup, nada). ALL her other cunningham's were on the absolute high end of the "normal range" just like your daughters. Except her Anti-Dopamine 2 was totally in normal ( low) range. Dr L, said , YES Pandas ( surprising since dd has been SO responsive to 20 mg Prozac as most Pandas kids are not) And that , from her experience reading Cunningham results, kids who are OCS/Sensory Pandas tend to have normal everything and kids who have serious Tics DO have high Anti Dopamine 2 levels.

  7. I woke up early this morning....thinking....again about all the pandas stuff. Then it hit me, that maybe it is tourette's and not pandas (still no confirmation), and it's my fault. Maybe because she has heard my husband and i having some pretty scary arguments, maybe because I homeschool and my 13 year old daughter and i go at it a lot.....maybe it's because i get really bad pms sometimes and freak out. I have read that "psychosocial stress" can be a predictor of future tic severity. So maybe I have caused all this. Can stressfull events to a little 5 or 6 year old CAUSE tourette's to "express itself?" Maybe it's not from the pneumonia, the strep, the impetigo......can't get anyone to run tests on those till end of december....I am serious about that question though. I really don't want a pity party, but do wonder if a stressful home environment could have caused the tics to express?? Anyone......???

  8. Again, please keep us posted on follow up. I am about ready to consult with him, but have heard that follow up after phone consult/labs being ordered is not great..

     

    On Friday night, I desperately sent Dr T a lengthy email at his website and called his office number and left a short message. He sent me an email back giving me a time frame to call him on Sat morning and that's how we started. Took DS6 in on Monday to ped's w/ the list of blood tests to run and abx. Started abx. Waiting on results.

     

    Cindy

  9. Again, please keep us posted on follow up. I am about ready to consult with him, but have heard that follow up after phone consult/labs being ordered is not great..

     

    On Friday night, I desperately sent Dr T a lengthy email at his website and called his office number and left a short message. He sent me an email back giving me a time frame to call him on Sat morning and that's how we started. Took DS6 in on Monday to ped's w/ the list of blood tests to run and abx. Started abx. Waiting on results.

     

    Cindy

  10. Please let us know how follow-up goes....that is where i have concerns.

    [

    quote name=momcap' timestamp='1287578728' post='88987]

    We just started under Dr. T's care. I emailed him and he replied 1/2 hour later! Then I called and he spoke with me for almost an hour! He gave us a list of blood tests and we are scheduled for a formal phone consult when the blood tests are completed. I am VERY happy with our experience so far. His contact info is on the website that KaraM posted. Good luck!

  11. FixIt--please do share your moment:)

    I'm wondering who the new doc is that thinks many infectuious entities can trigger a pandas episode......

     

     

    Mycoplasma pneumoniae is ubiquitous and probably all of us have been exposed to it at some point. Elevated IgG means there is evidence of past (who knows when) exposure and possibly infection. An elevated IgM indicates a recent or present infection. Although everyone I have consulted regarding elevated Mycoplasma pneumoniae has admitted not knowing specifically the implications of elevated antibodies as related to PANDAS symptoms/tics, a couple of physicians have said that it can possibly be significant. The rest have said it's not a big deal.

     

    I find it interesting that infections of Mp are on the rise according to the CDC.

     

    I have come across a couple of published accounts of tics/ocd being associated with a Mycoplasma pneumoniae infection. As far as antibiotic treatment, the -mycin class of antibiotics is used. In addition, Nystatin, which is normally given for fungal infections, is effective against Mycoplasma, as this bacterium lacks a cell wall, as do fungal cells. My son was treated at the onset of his very first tic/ocd episode with Nystatin only, because the doc then thought he had intestinal fungal colonization. All tics/ocd disappeared within weeks. It didn't work as magically with subsequent episodes.

     

     

    Our newest PANDAS doc (been through a few!) has told me that he believes many infectious entities can trigger a PANDAS episode in those kids who are prone to the problem, including strep and mycoplasma. My son only has residual ocd (so mild you wouldn't know it was there) and trichotillomania, which may be another form of ocd. He has been on biaxin, azithromycin, and now is on penicillin vk prophylactically and to try to rid the torment of the trichotillomania. He does have mycoplasma IgG of 6.7! Have not retested since April.

     

    you have given me an "aha" moment!!!!!!!!

  12. Anyone have any idea what Dr. L likes to test for when you see her? The office won't tell me, says that she has to see the child first. I understand that (I guess), but am super-duper anxious to get some tests done, and maybe even start abx if needed ( but want tests run first). With the latest discovery that my daughter possibly had "mycoplasma pneumonia" end of March (funny, thinking back, pretty sure that's when the first couple tics started), I really want that protocol run. Was thinking about a consult with Dr. T (who's a big myco. p. guy....), but sitting on the fence for a number of reasons. Just thought I might try the "beg" approach with the ped. Are there any pandas literate docs who will talk on the phone with your ped. and sort of "bring them up to speed" and suggest tests, etc.?

    Thanks again....

  13. As I continue on trapped without any medical support until Dr. L on Dec. 23, I decided to pick up my daughters records. I just looked back and saw that she was seen on 3/22/2010 for "walking pneumonia." I thought that was back last November. Anyhow, it says "??Mycoplasma Pneumonia" for the diagnosis. No blood was drawn, but she did take Zithromax 200/100 x 5 mL for 5 days. Her cough cleared up very quickly on that. But that is not when her tics skyrocketed. That might have been when she had one or two. It wasn't until the one-day fever on June 24 that the tics went from 2 or 3 to over a dozen. And they just continue to get more frequent, in spite of being treated with Augmentin for 9 days end of Sept. for staph Impetigo. The ocd had been there prior to June 24 too....

    Don't want to get too excited about this, but could she still have an underlying infection of myco.p? without symptoms? otherwise healthy as a clam? also, i read that there is acute or chronic infection of myco. p, but you also have to consider an autoimmune response. How are those two things tested in case the infection is cleared?

    thanks!

  14. Hello,

    I thought i saw some posts that were dated over the summer about a Virginia area support group...or even just moms that meet to chat, grab a meal, anything.....Is there anyone out there who is part of this that could get me in touch with these families?

     

    Also, still searching for a local-ish doc to get things moving until I can get in with Latimer on Dec. 23...I'm in Virginia (Warrenton), near Northern VA.

    Thanks!

  15. Just FYI about Dr. Fortner. I called today and they said she is not taking any new patients:( Bummer!! Anyone else in VA got a good doc??

     

    A brief update for all - sorry it's been forever!

     

    Our daughter has been seeing Dr. Fortner now ever since I made my original post. She knows PANDAS on a personal level and has been an amazing source of help and sympathy. Our DD has been on long-term antibiotics for over a year now. We started off on the full dose and then we backed off to half as a maintanance dose. When DD starts exhibiting symptoms we up it to the full amount for two weeks or until the symptons wane. I would absolutely recommend her to anyone in the Virginia area looking for help with their PANDAS child.

     

    Incidentally, Dr. Fortner's office and nurse/assistant all are amazing. To this day it shocks me at how polite everyone is, and willing to help - and we're not talking a small office! They have multiple locations around the area, AND if you need a titers test done (which Dr. Fortner doesn't mind ordering), you don't have to go to the local LabCorp for the draw. Her own office does the blood draw and "Mo" is especially great with DD when it's time for that.

     

    I just can't say enough good things - we're just truly happy with Dr. Fortner and are glad to finally have a medical doctor advocate on our side! B)

     

    If anyone has any questions, please don't hesitate to e-mail me! lacyhatton@aim.com

     

    Lacy

     

     

    P.S. We never did go back to Dr. Koch. He is a very nice man, but was very open that he didn't know much about PANDAS and we got the impression that he didn't like keeping DD on the long term antibiotics.

     

     

    Richmond, Virginia Area

    (And these ones take insurance!!) :(

     

    Pediatrician, Dr. Julie Fortner

    http://www.richmondpediatriccenter.com/def...t=1&Child=1

    [i may be a little premature at recommending Dr. Fortner, but read on:]

    We have an appointment with Dr. Fortner next week and I couldn't be more thrilled - I think we finally hit the jackpot on someone who will LISTEN! So far her staff (receptionist and nurse) have been extremely sympathetic, warm and friendly. And while it's not my business to give details, I think it's safe to tell you all that Dr. Fortner (from what her nurse was telling me) has first hand experience with dealing with PANDAS children. I am absolutely looking forward to next week! :mellow:

     

     

     

    Pediatric Infectious Disease Specialist, Dr. William C. Koch

    http://www.vcuchildrens.org/?id=716&sid=4

  16. Hello,

    I posted a couple months ago about my 6 1/2 year old daughter, who had a couple tics that started early spring, and mild ocd for the past year or two. At the end of June, she ran a high fever for one day, then within a week, and explosion of tics. She's been progressively getting worse since then. She was up to a dozen tics, head to toe, within a couple weeks of the fever, but now they are getting to the point of almost constant. She's never been diagnosed with strep, but I've never taken her in for a test! She'll get fevers for a few days, but I just wait them out. She does have ocd, separation anxiety and hyperactivity.

    So, while I am trying to figure out how to decipher between Tourette's and pandas....and getting nowhere (ped. doesn't "buy into" pandas), I am hoping to try some other things.

    I know many of you swear by food sensitivity elimination. I still don't understand how this part works, as the child has had the sensitivity, but suddenly starts to have tics? HOWEVER, I am interested in getting testing done for her. Can anyone recommend good labs ,etc. to get this done? I have heard some of the sensitivity tests are not so reliable. I am guessing it will take more than an "allergist" as they usually just do skin scratch tests, which only shows a true allergy and not a sensitivity.

    Thanks for any input.

  17. Hi Colleen,

    I noticed on the latitude pandas forum that you live in Virginia. I do to, and my ped. will not look into pandas...doesn't "buy into" it. I saw that you consulted with Dr. T?? I am desperate, as time is marching on, and we are 4 months into this, tics getting worse...well over a dozen or more, more and more constant. The problem is that she's had mild ocd for a long time, and had two little tics a couple months before the fever that kicked things in. Also, I am not certain that this was even from strep this time, although there could have been strep a number of times....I just never take her in:( I am not scheduled with Dr. Latimer till dec. 23, but I am not "sold" on her....does she look into everything or just go for sterioids,abx and ivig?? I don't know if this may be Tourette's, so trying to figure that out. Thanks if you have any info. Wendy

     

    I was wondering what is the best way to get in touch with Dr. T if you have already done a phone consult with him.

    TIA.

    Colleen

  18. Sorry for the silly question, but what is HD??

     

    HD IVIg (1.5g/kg) is what cleared my DD's tics completely. We saw 70% improvement after first HD infusion in August 2008 and within a year she only had one tic left. Second HD infusion was in March 2010 and since summer I have not seen a trace of that (or any) tic. Prior to starting IVIg DD had extreme motor and vocal tics, as well as chorea movements.

  19. I would love to know what antibiotics were used too. Also, if there were any who might have had a more "chronic" lower intensity (possible pandas) with a then more sudden explosion.....this is getting so frustrating for me---tried to get my daughter treated within a month of explosion of tics......nope. Now we are 4 months post-explosion, she's ticcing more and more frequently. But she'd had a couple tics for a few month prior, and mild ocd for a couple years.....

     

     

    It is interesting so far, the children who are currently in complete remission from antibiotics alone were treated within 2 months of onset (Vickie, Myself and Kayanne) (You can view who voted next to the question...just hit view)

     

    So far, this is supporting what I believe to be crucial....treat symptoms immediately. When your child suddenly starts ticcing, or shows any new strange behavior.....give a good 3 week course of full strength antibiotics! It could really make a difference for the childs future, and, how could it hurt? Now if the medical community would just come on board and treat sudden onset tics, ocd, etc. with antibiotics REGARDLRESS of any apparant infection....I wonder how many kids this could help...and such a simple thing. I would urge any new parents experiencing sudden onset of behavior/motor changes in their child to do everything they can to get their hands on a good course of antibiotics...ASAP!

     

    The time of treatment is corresponding with current symptom status in all areas so far, actually. The ones who marked 3 or more years are marked at 60-80% improved. Interesting. I find it peculiar that dr.K told us at our office visit that it doesn't matter how long the child has had PANDAS...the response will be the same to treatment. (assuming he meant IVIG, though) But, it seems it really does make a difference when concerning antibiotics. Not sure about IVIG...that would be a different poll.

  20. Hello,

    I llive in Virginia, and i am having a heck of a time finding a doctor who believes in pandas. My ped wouldn't even run her titers. Did you see Dr. Fortner? How did it work out with her? Also, Dr. Koch?

    Thanks so much!

     

    Richmond, Virginia Area

    (And these ones take insurance!!) :(

     

    Pediatrician, Dr. Julie Fortner

    http://www.richmondpediatriccenter.com/def...t=1&Child=1

    [i may be a little premature at recommending Dr. Fortner, but read on:]

    We have an appointment with Dr. Fortner next week and I couldn't be more thrilled - I think we finally hit the jackpot on someone who will LISTEN! So far her staff (receptionist and nurse) have been extremely sympathetic, warm and friendly. And while it's not my business to give details, I think it's safe to tell you all that Dr. Fortner (from what her nurse was telling me) has first hand experience with dealing with PANDAS children. I am absolutely looking forward to next week! :mellow:

     

     

     

    Pediatric Infectious Disease Specialist, Dr. William C. Koch

    http://www.vcuchildrens.org/?id=716&sid=4

  21. Thank you for your story! I agree---I want to be as certain as possible before I do anything. Steroids also make Tourette's worse too. How did you get diagnosed PANDAS? Also, there are so many Lyme tests out there--and so many people test negative with Western Blot, but then Igenix is always positive. What's up with that? I've heard IGENIX is a scam. We live in Virginia---heavy tick area. Two of our neighbors have Lyme, but it's taken over a year to finally test positive. I think Lyme is kind of becoming the new catch-all for docs when they cant figure out what the heck is really wrong. Don't get me wrong, i definitely believe it exists, but my one neighbor's LLMD is convinced that she has Lyme, even though she is still testing negative!!

    How can you ever find out what the infection WAS, especially if there's so much time going by before finding a doc who will even test for other stuff??

    Thanks again for your thoughts:)

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