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eljomom

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Posts posted by eljomom

  1. topaz....i am curious about being diagnosed with TS AND Pandas. I would say my dd has tourette's and some ocd, based on symptoms....she has many tics and some ocd, hyper, etc. But the onset was likely after infections (many since a baby, and many untreated for years)....ocd age 4.5ish, for a couple years, then explosion of tics after a fever last (2010) summer. She has not stopped ticcing since. But I am told it's pandas. So if it's TS, you basically treat with tenex, clonidine, etc., but if it's pandas, you need to knock out infection or calm autoimmune stuff. Did Dr. B diagnose both of those?

  2. topaz....i am curious about being diagnosed with TS AND Pandas. I would say my dd has tourette's and some ocd, based on symptoms....she has many tics and some ocd, hyper, etc. But the onset was likely after infections (many since a baby, and many untreated for years)....ocd age 4.5ish, for a couple years, then explosion of tics after a fever last (2010) summer. She has not stopped ticcing since. But I am told it's pandas. So if it's TS, you basically treat with tenex, clonidine, etc., but if it's pandas, you need to knock out infection or calm autoimmune stuff. Did Dr. B diagnose both of those?

  3. topaz....i am curious about being diagnosed with TS AND Pandas. I would say my dd has tourette's and some ocd, based on symptoms....she has many tics and some ocd, hyper, etc. But the onset was likely after infections (many since a baby, and many untreated for years)....ocd age 4.5ish, for a couple years, then explosion of tics after a fever last (2010) summer. She has not stopped ticcing since. But I am told it's pandas. So if it's TS, you basically treat with tenex, clonidine, etc., but if it's pandas, you need to knock out infection or calm autoimmune stuff. Did Dr. B diagnose both of those?

  4. topaz....i am curious about being diagnosed with TS AND Pandas. I would say my dd has tourette's and some ocd, based on symptoms....she has many tics and some ocd, hyper, etc. But the onset was likely after infections (many since a baby, and many untreated for years)....ocd age 4.5ish, for a couple years, then explosion of tics after a fever last (2010) summer. She has not stopped ticcing since. But I am told it's pandas. So if it's TS, you basically treat with tenex, clonidine, etc., but if it's pandas, you need to knock out infection or calm autoimmune stuff. Did Dr. B diagnose both of those?

  5. Those titers were run back in November, when we first had a phone consult with Dr. T. They were normal. Everything is just "normal" except for her.

    We did have RAST allergy test done by ped.....there were many "flagged" allergens, but only in the Level 1 & 2 (on a scale of 0-6). Level 0 is Negative, Level 0/1 is Equivocal, then it says "Increasing levels of Specific IgE on Levels 1-6).

     

    Still can't get any C3d, yeast, etc., immune complexes run, viral panel. Pandas doc says it wont' be of any value in treatment.

     

    Pandas16---I think I remember you saying you had IVIG as a child and it was a bad experience, and you'd never do it again???? I may be mixing you up with someone else, but always wanted to find out why? I'm also so scared of steroids, since I've heard that they increase dopamine, and dopamine increases tics. Haave heard of kids doing a bit better on them for a very short period after, then tics, etc. getting worse than before the steroids. Same with tonsillectomy. It seems every chance to help her get better also has a chance of making her worse.

     

     

    I'm sorry your daughter is suffering. Have you checked other things like mycoplasma?

  6. beesknees...can you remind me ... did you use Igenex for lyme AND bartonella??? Do you know which panel the co-infections was run? WE have been waiting for a month for our pandas doc to send the orders for the tests. Kits sitting on my counter. Keep calling, e-mailing. I guess b/c my dd is not "debilitated" we are on the back burner.

     

    My son had extremely high ASO & Anti-Dnase (450+/900+ consistently), for a year after abx, in conjunction with 8 months post T & A. The doc said that she thought that Strep was getting thru Augmentin and we switched to Cefdinir. It may have been luck in lack of exposure or the cefdinir being more effective, but he had high titers still in 3/11 and by late June they had finally gone down. Coincidentally, we just found + Bart & Lyme a few weeks ago. The Strep titers continue to be close to normal range. Hang in there!

  7. What do we do now? My dd7 has had tics since a high fever last June (over a year ago). Never do they stop. She had a few that started a couple months before the big explosion last June. Prior to that, some germ ocd, hyper, sep. anxi (all stuff I saw as "quirks"), clothing issues, etc. It's either 6-8 various tics all throughout the day, or now we have the tapping/evening up with some nose scrunching, but the eye blinking is NONSTOP again. NONSTOP!!! I swear it was just a week ago that I said to someone "if I ONLY had a kid with eyeblinking, I would be so happy." Eatin' those words. She has never had high titers. Augmentin was tried last November for a month, and I swear she got a little worse. Pandas doc switched her to zithromax....very low dose, and we've been getting the run-around with the doc ever since. Zith didn't help. She's mostly happy and functioning ( we homeschool), but tics and ocd'ish. About 5 weeks ago, her blinking got nonstop, and for lack of better things to do, took her for a strep test. Never positive before (well, never was swabbed all her life b/c they were always treating URI's with abx anyway). Low and behold, it was positive. Ped. switched to Keflex. AFter 10 days, re-swabbed. Negative. Talked him into keeping her on abx for a bit, per the ENT our pandas doc referred us to for tonsillectomy that I'm not sold on as a "needed" procedure. Tonsils were small. No titers. etc. So now the past 5 days or so, the eyeblinking is NONSTOP. Some quesions:

    1) Would she swab negative since she is currently on a treatment dose of Keflex? Do antibiotics interfere with strep tests?

    2) She fell and tore a big chunk of skin/flesh out of her knee over a week ago. Had to go to ER. They couldn't stitch it b/c it was too "damaged" so steri-stripped it after cleaning it out real well. Had to keep dry for a week. She is on Keflex, and it is not infected (checked in with ped. yesterday). Could she still be reacting to this tough?

    3) 2 of my other kids are having a few tics now. WTF? No one is swabbing positive for strep. I don't want to go chasing around strep carriage if that'snot the only villian here. I just don't know anymore. I could take her for strep test, but really think it will be negative due to being on antibiotics. Antibiotics never helped us with symptoms anyways. So lost...........

  8. LLM---I think PowWow and I share the same pandas doctor.....good luck getting this doctor to order ANY of the tests you listed. I have been asking for them to be run for almost a year, and have been told repeatedly..."they will not be helpful."

     

    Like you, we had an older child with clear cut issues and a younger one with "hmm..." symptoms. She stayed just under that "need to take action" radar for about 2 years while we dealt with more immediate problems with the older one.

     

    One thing that helped us was some quantifiable blood work - C3d immune complexes that were elevated (indicator of general immune system activation), C3a and C4a immune complexes (sometimes rise with lyme and/or mold), vitamin and mineral panels(deficiencies can cause many issues), CBC panels, yeast/candida blood work, etc.

     

    DDs blood work "proved" that her immune system was reacting to something. Over the course of a year, her C3d went from 25 to 50something to 96 (above 8 is high). Now, after 8 months of treatment with an LLMD, her C3d has dropped down to 23. Her C3a was very elevated (a possible indication of lyme which coincided with an indeterminate Igenex report) and her C4a was normal (often coincides with a reaction to lyme or mold). Her ASO and Anti-Dnase titers were normal. Her eosinophils were normal, lessening the picture that some sort of food allergy or respiratory infection was causing her reflux...

     

    No single blood test confirmed a specific infection, but it did give me that quantitative data to say that her behaviors were more likely driven by a physical cause rather than just fringe kid behavior. When we put her on abx, her behaviors responded and calmed down very quickly, further confirming that link between behaviors and infection.

     

    So I'd suggest discussing some blood work with the doctor on your team who's most Pandas supportive. It may help clarify that gut feeling you have.

  9. If you look at the bottom of my post (press release) there is a link, but here's what it says:

     

    Bb culture nuts and bolts

    Sensitivity exceeds 80% if the patient is symptomatic at the time of blood draw and not on

    antibiotics for at least four weeks

     

     

    We have found that the success of culturing Borrelia can be increased by following these simple

    recommendations:

    The patient should not have been exposed to any antibiotics, even those not known to affect

    this organism, for a minimum of four weeks prior to the blood sample being drawn.

    Borrelia are more likely to be recovered from patients who are symptomatic at the time of

    blood sampling.

     

     

     

     

     

    Where does it say you need to be off abx for 4 weeks? Can't find that.

  10. This was in an e-mail I received from a yahoo group "Virginia lYme" today. Anyone heard of this? Won't be able to use, because we have to stay on antibiotics for pandas too. Quote below:

     

    This is from Dr. Burrascano:

     

    http://www.researchednutritionals.com/information.cfm?id=255

     

    September 5, 2011

     

    Joe Burrascano, Jr., MD has announced a new lab test available for Lyme

    doctors to use in determining if Lyme is present.

     

    There is no need to wait for antibodies to form since this is a

    culture-based test. This should provide much faster and more accurate detection,

    and allow Lyme patients to receive treatment as soon as possible.

     

    Please read below for Dr. Burrascano's description of the new test:

     

    In my work as a consultant, I have been working with a private lab located near Philadelphia, Advanced Laboratories, Inc. They wanted to develop a unique and high value test, and, with my interest in Lyme, I naturally encouraged them to work on a better Lyme Disease test.

     

    As a result of some very intensive work on the part of a group of some very brilliant scientists, they have succeeded in developing a reliable and rapid blood culture for Borrelia! See the attached press release....at TOP of this post.

     

    They actually have rolled out two separate panels- a basic one and an advanced one. In the basic panel, the blood sample is cultured and the positives are identified by histology and growth characteristics, and confirmed by fluorescent immunostaining. Positive reports will include a picture of the Bb growing in that very culture. Positive reports will include a picture of the Bb growing in that

    very culture.

     

    The advanced panel will do [all] this, but will also do PCR using well characterized and published DNA primer sets, and then all positive PCRs will be confirmed by DNA sequencing.

     

    Remarkably, turn-around time can be as brief as ten days for the basic test, and seven to ten more days for the advanced panel.

     

    This test is being rolled out gradually, with no big public announcements yet. That is why I am e-mailing you, so you can be among the first to be able to order this testing, before the lab gets swamped.

     

    Apparently you have to contact the lab to have test kits sent to you. The blood must be sent out the same day it is collected, and

    the lab provides a prepaid return FedEx mailer. As the lab is not yet accepting specimens over weekends, please do

    not collect blood on Fridays.

     

    The bad news- New York being New York, this culture will not be available to NY State practitioners for several months. The States of California and Florida may [also] have a delayed availability- I am not sure, so please contact the lab to get this info.

     

    However, all other states are OK. I have no idea on pricing or on insurance issues- again, you will

    have to contact them for this info. The lab plans to have a booth at the conferences at LDA and at

    ILADS, so hopefully their presence will allow all to field questions.

     

    The next step in their research is also equally exciting and ground breaking, but I am not at liberty to say yet what is being planned.

    I will be travelling over the rest of this week, so I am afraid that I may not be able to answer any calls or e-mails until I get back, so if I do not

    respond to any contact efforts, please be patient.

     

    As many of you recall, I learned the basics of true, clinical Lyme over 25 years ago thanks to Bb culturing that was available to me by Dr. Alan MacDonald. The new methods being used by this Pennsylvania lab go far beyond what MacDonald was able to do, so I am very excited to not only share this news with you, but I also cannot wait to see how it will change how we practice.

     

    I also predict that Bb will be found in a lot of people, from mildly to severely ill, and that will redefine the role of the immunologist in

    Lyme to find out why some people recover and why others do not. Strain info as provided by the DNA sequencing data will be equally

    fascinating to follow.

     

    So, enjoy the good news, and PLEASE, if you are going to begin culturing your patients, keep good records of your results. Data collection and tabulation has never been as important as it is now, with a quantum advance in testing technology.

     

    Best wishes, from Dr. Burrascano

     

    To read the press release with contact information:

    http://researchednutritionals.com/Announcements/LymeCultureTest.pdf

  11. I homeschool in Virginia, but from what I know about Virginia law, Kindergarten is NOT REQUIRED to be entered into first grade. In fact, we don't even need to send in standardized test results for kindergarten. We do have to submit an "Intent to Homeschool" form. The VERY wonderful website I would recommend, or you could even call them first thing Tuesday morning (and then PAY AND JOIN if you do decide to homeschool) is HSLDA. My link The fee in nominal considering you get free legal representation 24-7 365 days a year. They will know the answers to any questions you have, or will point you to the legal advisor who will. Invaluable.

  12. Our pandas doc, who has been all over the map with our treatment, has been saying to pull dd's tonsils for months. This based on dd never having confirmed strep. And ENT saying he'd pull them because he does that for pandas kids our pandas doc refers, but they sometimes get better, or sometimes not, and it's not a "cure." He also scoped her in the office and said her tonsils are small.....1 on scale of 1-4.

     

    So I have heard a few people say the tonsillectomy did not help, but even made things worse. My husband says "we have to do what the doctor says....let's pull them." I am not so sure. I am afraid of making things worse. I told him I'd heard from a few parents who's kids have gotten worse after tonsillectomy. He wants to see what they said, and I thought it would help me if you all could reply to this thread so I could show him, rather than just dig and search my 3000+ e-mails in my inbox.

     

    Thanks!

  13. I know it's been addressed before, but I never really paid much attention to the fact that some kids with confirmed strep do not get rise in ASO. This is because we never had confirmed strep. Maybe because we never tested but once, which was months after this started, and was negative. Also, when we finally got her titers run after months of symptoms, her ASO was 6. And we were told it was great because this meant it was NOT pandas.

     

    So I've learned that yes, indeed it still can be pandas, or pitand, or whatever, with low titers. I ASSumed that we were pitand due to the low titers, etc. My dd had confirmed strep on a rapid about a month ago. Her symptoms (mostly tics, some ocd.....) have NOT REMITTED since beginning. Mild ocd was about 3 years ago (can't remember, b/c i wasn't thinking it was anything but a phase), then tics last spring....just a few...again, thinking a phase. Then the big one, after the fever, with over a dozen tics, ocd, separation anxiety, etc....Since then (last July), tics have not gone away, still mild ocd. So about 5 weeks ago, one of dd's sisters started ticcing a little, which she has done over the years off an on. Then dd (pandas) tics became NONSTOP. DH told me to get a swab, which I almost didn't do, b/c I thought we were PITAND> Low and behold, it was positive.

     

    Saw our pandas doc, who didn't think it was worth running titers. Wants tonsils out. That's another story. Saw the Georgetown ENT who pandas doc refers patients to. HE said some kids do better, but it's not a "cure" and some don't do better at all. I have heard from some who have done worse. But I did talk to ENT about running titers to see if she had a rise, to see if she even GETS a rise. He said it was a good idea. Just got the call that her antiDNAse B was not in yet, but the ASO was 6. Same exact number. She had strep 3 weeks prior to the blood test. Also, ENT did a scope and said her tonsils do not look large at all....1 on a scale of 1-4.

     

    So, wondering, I have read that ASO might not rise if kids are on antibiotics, which she still is. Also, the ENT said it means dd does not mount an immune response to strep. I guess this means she does not fight it??? But what does it mean immunologically? Do kids who don't have ASO rise tend to do better with IVIG? Really curious about all this. It simply MUST mean something, in my opinion.

  14. LLM---is there a blood test/marker for mold? Or do you have to hire someone to test your house?

     

     

    There is a growing collection of research to suggest that some TS cases are indeed infection-based. There are several other infection-based things beyond strep that can trigger tics. Lyme, Bartonella, mycoplasma, mold (tho that's not infection based). If you're so inclined, these things can be tested for with blood markers. But it depends on your gut. Some people are ok with adapting to life with tics and others feel driven to find a trigger and eradicate if possible. If you'd like a list of things you can test for, let me know.

     

    I think it depends on what you've tested for already and what co-morbid symptoms you may have. IMHO, the more co-morbid stuff you have going on, the more likely it is that there's a microbe involved. But that's only my opinion.

  15. dcmom----tried to pm you, but your inbox is full ;)

     

    I will briefly add my 2 cents for what it's worth (we are still out of power due to hurricane!).

     

    I agree, and our experience has been similar to pow pow.

     

    My kids were completely "normal", until they had strep 2.5 years ago at ages 5 and 8. They had overnight insets of OCD plus other related issues.

     

    For us, pex and steroids (both oral and IV) have been major life changing treatments. I personally cannot imagine if we had not used them.

     

    At the same time, I was interested in Lyme due to the talk on the forum. I tested - and of course both had some positive IGM bands. We followed that path for a while (multiple, pulsing antibiotic schedules)- and it did NOTHING for us. I didn't realize how uncomfortable it would be to give my kid a slew of abx, for something I was not convinced of.

     

    We abandoned that path, with the reassurance of a couple of top notch docs, well connected with a prominent lyme researcher.

     

    Following the pandas path has done well by my girls. The have had long term relief from pex (1 year, 1.5 years)- but they are not cured. PANDAS is ( IMHO) an autoimmune disorder- this most likely means no cure- just hopefully long term remmission.

     

    I know many on the forum are opposed to the need for a "label"- but I completely disagree. If you have a child with Lyme- you may be advised to avoid steroids (although I don't think a month long burst woul be immunosuppressive, and may help you figure stuff out)- yet steroids (and IVIG, and PEX) have been lifesavers for many of our PANDAS kids.

     

    In the end, it's going to be your call unfortunately :(. And that is why this is so hard.

     

    Your doc, while human, has been extraordinary for my family (and several others on the forum). This doc pushes for 100%, fights the insurance companies, and sticks their neck out to treat this "controversial" disorder with "experimental" treatments. This doc has saved my kids from continued profound suffering. So while not perfect-?worth taking the advice seriously.

     

    I hope you can find your direction, and find peace with that, and that your son continues to heal.

  16. mama2lex....i am curious about Bartonella...especially given my dd's symptoms. Did you have the bartonella tested through Igenex too?

     

     

    I'm sorry for your troubles with your PANDAS doc. Maybe you could call and ask her for her reasoning behind doing steroids?

     

    For us, Lyme/coinfection treatment has been anything but a "rabbit hole" - it has given us our lives back. And honestly, it stings a little when people refer to it this way. We tried IVIG twice and this did not get our son well, but I would never refer to it as a rabbit hole, as I know it helps some.

     

    I think each of these kids is different and we all have to find our own way to healing them. I think the most important things are to remain open-minded and never give up.

     

    As for steroids, we tried two 5-day bursts 8 months apart for PANDAS with varying degrees of success - both temporary. We have also had to do 5 - 6 day steroid bursts for two asthma attacks - so we did them Sept. '09 (PANDAS), March '10 (asthma), May '10 (PANDAS relapse 5 months after IVIG), and April '11 (asthma). I don't know what impact these may have had on our Lyme treatment progress, but our son IS much better than a year ago when we started with our LLMD. I will say our original PANDAS doc said the steroid burst success proved it was PANDAS, but obviously it didn't prove our son didn't have Lyme. I will also mention that the pediatrician and others involved in asthma treatment were adamant that we try to minimize oral steroid use because the doses are so high. So if there's not a really compelling reason to use them (especially for 30 days!), I would hold off.

     

    I also want to say that I think Igenex gets a bad rap in some quarters. There seems to be a belief that they return nothing but positive test results, but everyone in our family has tested negative. I was clinically diagnosed years ago and never believed it, so didn't treat. I have rethought this decision based on my son's situation, my own declining health, and other recent testing such as CD57. My husband was bitten by a tick, but is not sick. My son was diagnosed based on positive Bartonella test and clinical symptoms. So we got 3 negative tests back from Igenex -one true, one definitely false and one most likely false.

     

    I wish you the best with your decisions. With such a complicated illness, our best is all any of us can do.

  17. Oh no...this is yet another scary tonsillectomy story :(

     

    Her dystonia started about a week after her tonsillectomy/adenoids, after the zithro was temporarily stopped. (She was on zithro for 10 days post op, and then we were going to go to 2x/week.) Dr. T said it was probably from post-op bacteremia. Her tonsils, although they appeared normal, were full of puss. Surgeon said "Her tonsils are absolutely the most disgusting things I have ever seen, and I've done close to 2 thousand of these.)"

     

    Her dystonia was in her lower legs and feet. She also had simultaneous head/neck/arm chorea, and a little hand movement,which resolved after clindamycin and a steroid burst. The feet, although improved, never stopped, and then we tried biaxin and medrol. It was like a writhing motion where both feet rubbed together. Biaxin didn't really have any effect, other than severe/profound diarrhea, soh we had to stop after 2 days, and went back to the zithro.

     

    Tried tegretol after that, which did reduce it to the point where she could almost walk normally, but she would still fall down stairs and fell face first into a few snowbanks. Tegretol made her basically sleep all day, and she put on at least 10 pounds in about 2 weeks. It basically left her non-functional, and the blood levels weren't high enough, and she was starting to look extremely pale, although bloodwork showed no anemia. (you have to watch out for anemia on tegretol.)

     

    After the pharesis, her right leg was still pretty twisted/contorted, it almost looked like CP.. We went for PT, massage/stretch, which helped tremedously.

  18. Funny---I have always wondered if the reason some kids to better is because they are not getting "pandas autoantibodies" from donors. Interesting.

     

    My daughter had her first IVIG the end of June. Following that we saw great improvement. During July we went to a three week intensive OCD program where we continued to see improvement. We started to see a day here and there of pre OCD behavior toward the end of July but nothing major. She was scheduled for her second IVIG in August. Dr. M. always suggests two IVIG's and then a "wait and see approach". She started school back the first week of August and we saw major regression that week, but of course didn't know if it was the stress of school or what. Since then the regression has gradually gotten worse. Her second IVIG was one week ago. I would say that we are absolutely back to pre-IVIG behavior at this point. I could barely get her dressed and to school this morning. I cried as I drove away from the school. Just the thought of another school year like last year almost does me in. I am giving her charcoal but she won't take much medicine (and no liquids)so I have to pick and choose the most important things to get in. She takes antibiotics, fish oil, and maybe motrin or benadryl at night, depending on how many I can get down. In the morning I alternate, one morning I give charcoal, the next I give probiotics, milk thistle, and a motrin if I can get it in. It really is a miracle just getting her to take medicine. It was about four months ago that she would throw up any sort of medication. So it is really baby steps with supplements and so forth.

     

    So, I guess what I am looking for here is some encouragement that this is going to improve??? We had some really great weeks in July that gave me such hope. I want to see that little girl again. Does anyone have any ideas???

     

     

    Dedee

     

    I'm in the same boat and pretty discouraged so I'm sorry if this comes across negatively, I don't mean it that way. I have at least $1,000 worth of useless supplements that help for a short time then end. I've printed out enough research pages to fill a large bedroom. I've called every doctor in state and wish those who were useless would have told me so without having us wait a month, take the day off work and travel there to find they are dumber than tacks and twice as stubborn.

     

    My son was better after the first IVIG but worse after the second too. We seemed to finally find a few things that improved him this Summer only to find him worsening before school as well. I am sick thinking about it. Dr. T had said sometimes the donated antibodies in IVIG could be from a person with some PANDAS antibodies since it's so unrecognized, so it's a crap shoot. Many improve but sometimes you get a dud dose. Having said that he did have a "turning back the pages" and got worse before he got better after the first IVIG. It seemed like the last bad symptom came, became worse, then left, going backwards through his symptoms. It very well could be that for your daughter.

     

    I would think your choices might be another IVIG if she doesn't seem better soon, and hopefully it will be a good batch, or PEX to pull out the bad antibodies. We too still have elevated mycoplasma. And both Azith and Biaxin make him worse. So frustrating. We are hoping for PEX soon, praying it is finally the answer.

     

    Nancy

  19. Just heard back from the pandas specialist's office....after trying to reach this doctor for well over a week to follow up on the co-infection testing/repeat Lyme that THIS DOCTOR wanted to call about then decide which lab to use. Well, after bugging the front desk, they asked the doctor, who said to just go on with the ENT consult and then see how that goes first. Are you kidding me!?!?!? What, we can't run bloodwork ALSO----bloodwork that we will do regardless of the ENT consult??? I hate feeling like my hands are tied, but my hands are tied. We don't even have enough money for groceries right now without using AmEx. So I can't just call any other doctor or go out of state for a second opinion. Sorry, just so defeated.

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