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Posts posted by faith

  1. Lol...me too! East coast, tired, but determined! I also kept logging on and off .........couldn't believe what I was reading....I was sure it was a mistake! :blink: It wasn't until 1:15 that I accepted it and quit trying.



    Well 'acceptance' is the final stage, so you're doing fine!


    thanks for trying, good luck next time. :wub:

  2. Just wanted to post some links here to help understand what h. influenzae is. This one is interesting in that it does talk about interaciton between s. pneumo and h. influenzae. is this what you are alluding to , Wendy?



    From: http://en.wikipedia.org/wiki/Haemophilus_influenzae


    Interaction with Streptococcus pneumoniae

    Both H. influenzae and S. pneumoniae can be found in the upper respiratory system of humans. A study of competition in a laboratory revealed that, in a petri dish, S. pneumoniae always overpowered H. influenzae by attacking it with hydrogen peroxide and stripping off the surface molecules that H. influenzae needs for survival.


    When both bacteria are placed together into a nasal cavity, within 2 weeks, only H. influenzae survives. When either is placed separately into a nasal cavity, each one survives. Upon examining the upper respiratory tissue from mice exposed to both bacteria species, an extraordinarily large number of neutrophils (immune cells) was found. In mice exposed to only one bacteria, the cells were not present.


    Lab tests showed that neutrophils exposed to dead H. influenzae were more aggressive in attacking S. pneumoniae than unexposed neutrophils. Exposure to dead H. influenzae had no effect on live H. influenzae.


    Two scenarios may be responsible for this response:


    1. When H. influenzae is attacked by S. pneumoniae, it signals the immune system to attack the S. pneumoniae

    2. The combination of the two species together triggers an immune system response that is not set off by either species individually.

    It is unclear why H. influenzae is not affected by the immune response.[8]

  3. michael, I had a feeling it was you, :lol: What were you treating with the clindamycin? the strep v. or the h.influ.? he is doing better now? yes, please let me know more...



    do you mean parasite or bacteria? I'm under impression it is bacteria, and I've pulled so much from the internet and do see that it seems to be a pathogen of some sort, just can't figure if it means anything if we don't seem to have an active infection. What do you make of this, in light of strep not 'seeming' to be the culprit for us? I guess what I'm trying to figure is if having this harbored in there could cause a similar antibody response as being a strep carrier?

  4. Further update on tonsil culture:


    I mentioned here that I was going to ask our ENT to culture the tonsils and that I would update the finding.


    To remind those not familar, my son has strep in the past, but not in recent years, and all swabs, cultures and titer testing that we've had have been negative. Altho the reason for the tonsilectomy was because of enlarged tonsils, breathing/apnea, possible failure to thrive (underweight), and not necessarily for PANDAS issues, our ENT did agree to culture the tonsils in the hopes of laying rest the idea of strep hiding in the tonsils.


    Strep was not found. What was found in both tonsils was a bacterial called Haemophilus Influenzae (non type) the worst is type B, as in the HIB vaccine given to babies, but it is not the type B here). At present, we are not sure what exactly this means. ENT is not sure as he has not cultured tonsils before. I've consulted with Dr. T. on this. Since he's not seen this before, we are just looking at it as another peice of the puzzle.


    What could it mean? To me, I wonder if, since it is a bacteria (gram negative), could it be the culprit for us, in that my son is a carrier, similar to if someone had strep in thier tonsils? My son shows no sign of any active infection or symptoms now or in the past of h.influenzae (this is a bacteria, not the virus that causes flu, it is not flu.) Could this be natural flora in a majority of population? maybe. Even so, could it be acting similar to strep in the way of keeping my son's antibodies active? again, we don't really know. Dr. T. has prescribed a course of antiboitics to treat it as an active infection in the hopes of eradicating anything that might be circulating inside him. The treatment was 4 days of Rifampin along with a 10 day course of Augmentin. my son was not on abx right prior to this, altho we did give him a few days of Augmentin before the surgery, but had to stop midway due to vomiting, which I think was viral.


    Since, Dr. T. has posted on the board about this finding and apparently, a couple other patients are reporting this as well. I don't know what it means. I am just wondering if this is a bacteria, and it was in fact harbored inside my son's tonsils, could this be our smoking gun? :lol:


    any thoughts? does anybody have any info about h. influenzae with respect to how it may play into PANDAS or autoimmune?




  5. milwalkee mom,

    I'd be interested to know how things progress with NAET and of some of your experiences while treating. I have tried this with my son for about six months last year (about once a week). I can't say that it had any direct impact on his tics as a whole. I am not discounting it, however, for I feel that you never know what that one thing might be that the body could be reacting too, or just that will help in other areas of health, thus having an impact on tics in the long run.


    Could you give us some more background on your son's history?


    have you had any interesting experiences with any of the treatments, even if you feel it didn't help tics? My son had a patch of excema on his foot and knuckles at the time we were doing NAET, and I felt it had something to do with it resolving shortly thereafter and is now gone. it seemed to be after the treatment for sugar. of course, can't be sure, and also, I really wasn't caring about any other symptoms, just really trying it hoping I might hit upon that one thing that might help his tics. There are a number of other things I hadn't got to yet and would still like to give a shot, but for the present time, I was switching gears, and as we know, it can get expensive.



  6. I am just kind of curious how all the controversy about IVIG and doseage all got started. Back in the fall, it looked to me like IVIG or PEX was the way to go. Then some were reporting not so promising results, and I am under the impression that is how the monthly IVIG became all the rage. Now those who were doing monthly are also reporting not so hot results, and so the advice is now back to one IVIG.


    I have no experience with any of this, but am interested in others experience, as I'm sure many others here are. I guess my question is basically, how did it go from the one IVIG or PEX to the monthly? why did people start doing that in the first place if it wasn't the right way?


    Forgive me for asking, but SFmom is with Dr. K. and has had several IVIG. If Dr. K. didn't think that was correct as per the explanation that is put forth here in this thread, then why did he do it with SFmom?


    Thanks, its just getting very confusing.

  7. Maybe the sigh could be vocal if he does it repeatedly and he's not really sighing at anything.


    You asked in your first post about TS vs. not, I don't think any conventional doctor is going to differentiate. My feeling is if you've had tics for over a year and includes the vocal, then yes, maybe ts. but I don't get hung up on what it is called. if you have found a trigger that keeps tics at bay or controlled, then really what does it matter? Tics do wax and wane yes, but if you are seeing direct correlation and don't think its a coincidence, than it is probably from the foods if that is what you are seeing?


    When he gets offending food and begins to tic, how long does it last? do you need to wait a few days to get it out of his system, or does he just tic for a few hours and then its over? I think a wax and wane is more like a certain tic will increase and be the prominent one for a few weeks to months, and then kind of slow down or even disappear. My son's motor tics are becoming more infrequent, he's had eye twitching tht was very often in previous years, but I've not seen that in a while. he's also had some head shaking, which seems to last more than a month and then goes. if it is due to anything I've done or not done, who knows, but right now, I don't think its diet, because I am not watching it as good as I used to and thos tics are still away. But, his vocal tics are pretty prominent and they are always there, no break, maybe a day or so where they are 'not so bad', but there nonetheless. so that's the one I'm after right now. .... I'm sorry, did you say he was nine?


    mars, I would poke around at some threads by "Carolyn N.", she seems to have had a good handle on food sensitivities, msg to be specific, and how it affected her son, and what other measures and supplements she has found to regulate that. she seems to have had some good success and has done a good amount of research, trial and error, some of this might ring a bell for you.



  8. Once what is eliminated? the foods you mention, wheat, dairy and eggs? If your son stops tics, that is really fantastic, for you have found the trigger for him. which do you think is the biggie for him? he has no dairy? and just 'some' wheat? A few here have had good success on things like the Feingold diet, which focuses on artificial flavors/colors/preservatives. A poster called Jeff has some posts on this that you might like to search out, altho don't think he comes on too often now.


    so are you saying that your son could be tic free or minimally ticcing, and then he gets one of the offending foods and has the tic reaction? and once it is out of his system, things calm down again? That is pretty much what we have talked about here in the last couple years, that is the ideal situation when you find the known trigger. I just can't seem to find the one thing that makes the big difference here, but as I've said, I've had to abandon some of tht for a while due to my son's weight issue. Does you son have any vocal sounds?

  9. mars, hello and welcome,

    Could you tell a little more about your experience with the food eliminations and lessening of symptoms for your son? We have talked alot of this here, yes, but I feel like not enough lately. I woudn't mind hearing more on this from a 'fresh face'. Did you do this as trial and error, or from food sensitivity (Igg) testing? how long did you eliminate before seeing lessening of symptoms and has the results lasted?


    I have tried this over the years for my son, but now that he is getting older (almost 11), I've had trouble with compliance and more recently, his weight has put him below the growth chart for his age, so eliminating food groups is really hard right now. but I would love it if I could find a renewed incentive to try something out again, maybe one thing a time. my son's tics are mostly vocal, and they are not good.


    I would like to hear more of your son's history and symptoms and how you went about this and what the results were.


    thanks so much for posting this.



  10. worriedmommy,

    It is common for tics to present more when someone is considerd "idle", mainly because there is more concentration and awareness of the ticcer to the feeling or urge to tic. I know its hard to understand, but alth my son is the one with TS (and you've probably come across me on the PANDAS board as well), I myself have some minor tics, so I can explain what a tic is a little better for you, for I kind of know what it feels like. If you met me, you would have no idea that I have any tics, because I don't do anything obvious, and I can certainly just not do it in front of anyone. but if I am alone, and just watching tv or reading in bed, I am more aware of the 'urge' to tic and so being that no one is around, I might let out a flurry of head tigtening tics or tapping something a few times. A tic is prececed by a physical urge, but I think it is somewhat mental too, kind of like what you might feel if someone pulled one hair on your head and tugged at it, it feels very 'nervewracking' and annoying, and you might want to rush up and scratch it to get rid of that feeling. but if the person kept tugging at it, you will continue to feel that feeling, and thus the urge to scratch it in order to releive it, and so the cycle of urge and feeling of momentary relief and urge and momentary relief, and then another urge and so on and so on. When a person is engaged in other physical movements and using their senses in unison, the 'urge' is not as predominant, and so it can be ignored for a bit. ... don't know if any of this makes sens, but I know it is hard for parents to understand what a tic must feel like for their kid and maybe not understand why they can't control it or only do it at certain times and not others. A tic is not a totally uncontrollable movement, in the sense that the tic or movement doesn't just 'automatically' happen with no preceding thought or concious effort to do so. If a person has a tic where he extends his arm, it is not that the arm just jutted out uncontrollably, it is that the person felt the urge to do so, most likely for that movement gives them a secondary or momentary relief of the tension or urge built up in that particular place. the person percieves that this movement will bring releif, but it only does for the second that it is being done, and the urge or tension comes right back, and so the person does the movement or tic again and again in order to relieve it. The problem is, that it in reality doesn't alleviate it altogether or necessarily for a long period of time. I do beleive that the urge or feeling to tic does calm and lessen over time, wether it is due to age or whatever reasons, it is possible, and so a particular tic can disappear for a time, only to return months later or be replaced with some other type of tic.


    Don't know if I've done a good job in explaining this, but I hope it helps parents to understand a little better what ticcing may feel like.



  11. DD did steroid burst 2/3/10 for 5 days, coupled with Clindimycin. She is a Mycoplasma case, not strep - or at least not currently (We did not know she was Myco until after the burst and the trial of Clindimycin). We had about 4 days within the 2 weeks following the burst where she had really good moods, no tics that I noticed and an ability to want to conquer the OCD. The 4 days were not in succession - they were variably placed throughout the 2 weeks. Starting on 2/17/10, she began ticcing almost CONSTANTLY (240 times an hour) and her OCD ramped up considerably. This lasted for one full week. The tics are back down now to about where they were before the burst, however her OCD seems to be worse than before the burst. Can anyone else relate to this?


    We finished with the steroid burst on Tuesday, 02/23/10. My daughter symptoms improved while taking the steroids. By Friday(02/26/10) all the symptoms came back. She doing worse than before(the steroid burst). Today, her OCD was severe and she spent hours crying. I am very worried!



    Here is a sad thought....

    Maybe things were actully wors than we realize as we start this and move forward....things get mildly, slowly better till that seems the norm...then when everthing wears off and you go back to baseline you've actually forgotten how bad it was(it just seems wore)


    I'll ask again...could there be a die off period with this that is ramping things up!!!!!



    you bring up two really good points.


    the part of things 'seeming' worse could very well be. when things are not so good and then we see some waning, that is promising, and then if things go the other way again, it will be noticed much more. If some say it was worse than before, then I'm sure they know, but I suppose it is all relative.


    Also, the die off you asked about., I'm kind of interested in that as well. maybe die off isn't the right term, but what I would like to know is if antibiotics could actually cause a worsening before getting better, maybe because whatever infection it is working on is being fought off, and maybe the antibodies are coming on stronger to fight the enemy it percieves? I could be wrong, but I think the way antibiotics work, is that they start to kill off the infection, and so it causes antibodies to actually work a little harder to eradicate the enemy it percieves? (I'm talking in normal people, without PANDAS), and makes more antibodies to kill off the bacteria, until it finally wins out. so is it possible that when that is happening, (in PANDAS kids), the more antibodies that start being produced to kill off the infection, the more symptoms we may see because there are more antibodies to poke t the brain? maybe that is why some do well on the high dose? (remember, for PANDAS, it is not the strep or infection or bacteria that is causing these problems, it is the 'antibodies' to it).. I don't know if I'm saying this correctly, but that is my understanding. My son seems to have this reaction when presently doing abx (both times with azith, and now augmentin), so I'm wondering why. I don't want to give up and stop, but I'm tempted. I think I'm going to keep going tho, or I'll never know.


    any thoughts on this?



  12. melanie,

    does your boy normally have days in between with no tics, or did you only start seeing tic free days after starting IVIG? I know you've gone back and forth with his symptoms, but are you seeing an overall more positive trend than before? its hard to gauge when things wax and wane, but I guess what I'm asking is,..has it been common for him to wane on tics or certain tics in the past even before IVIG?



    Doug, yes, how is your little girl if you are reading? did she get over the flu after the IVIG without incident? is the ocd still good?




  13. Hi,

    my son is now almost 11 and has had tics from early age. I think from early on, kids don't really notice or even care when another child has tics, they don't really look that hard. I worried my head off and cried every year out of fear of just that reason.


    I would say my son's classmates probably heard him making some noises and noticed some eye twitching in second grade. every year I would hold my breath when the school year started, wondering if this would be the year that everyone noticed and commented. Thankfully, my son is pretty social and as funny and annoying as the next guy, so basically whatever he did kind of just went either under the radar, or the other kids just became used to it. He pretty much has a number of friends who may or may not know what's going on, but they don't say anything. I am sure there may have been a few kids who were caught off guard when fifth grade began this year and may have thunk to take the opportunity to goof, but it seems that passed rather quickly, and I don't see that there are any problems. I keep the teacher informed from the beginning and tell them to just ignore it and if there were to be any problems with anyone, then they could handle it on individual basis, maybe explain to someone on the side if need be. But the teacher has assured me that things were fine and my son's tics are not an issue in his classroom. it has been that way pretty much each year, altho I'm sure there may have been a couple of uncomfortable moments for him, but nothing that continued or became what anyone would call making fun of...


    I do however, have my fears and anxiety when he changes to middle school, for that's where all the elementary schools come together and it will not just be kids from his school who he has known for the past six or seven years.


    Andrea, I would say at this age, keep him as social as possible, the more kids he deals with now, they will be familiar with him and it will help for him to have a circle of friends and aquaintences that know him and know he is a great kid who just happens to have some tics. I'm pretty sure it will be no big deal to them. if he acts like its no bid deal, so will they. It is to us, for we are the ones whose hearts break.

    You'll be surprised, things will probably never get as bad as you fear.




  14. I don't really know for sure. my fear was that it would spike tics and make him worse. I have no proof that's what would happen, but there were a few reports of that, so it was enough to make me think twice. also, I don't see it as a permanent fix, just temporary, so for now, I'm waiting. I believe that Diana P. has said somewhere back a ways (don't shoot me, I read that in a post of hers) that a steroid burst is really somewhat an act of compassion (I suppose for those in a crisis mode) and can be used to buy time. I didn't think my son was that bad, but I can certainly see where those that are really affected can benefit.

  15. faith-


    You may never find the strep link- which stinks.


    Have you done the Cunningham test? I think that would be really helpful for you to see what is going on. It is not an absolute- but it is helpful to see...


    If pandas is an autoimmune issue- so many things can be triggers, I guess depending on how sensitive the child is.


    Do your kids have tics or ocd- or both? If ocd- I wouldn't think twice- I would do the steroid burst. It is so helpful to see the improvement it may bring. If there are tics involved, the cunningham test may ease your mind (if positive for pandas) about trying the burst.


    Wish I could help you. Pandas is so frustrating! I am the type of person that wants anwers, and absolutes (esp where my kids are concerned). I can only say, that, in our case, in my gut- I feel like we have eradicated infection (of course I have tons of moments of doubts). I think this is as simple as an autoimmune disorder has been turned on in my kids (which sucks). They create these autoantibodies, and I guess like other autoimmune issues (which I think I should start studying) there are many known triggers, and probably lots of unknown triggers. My kids suffering did not stop on antibiotics alone.


    I hope this doesn't seem depressing (I am in a bit of a bad spot right now), because I am hopeful that this disorder can be successfully managed. Unfortunately health insurance, financial issues, and some doctors stand in our way.


    You will find the correct path for your kids....



    He is predominantly tics, mainly vocal the past few years, but tics since about 3 or 4 years old. ocd in the way of erasing and retracing letters came on about two years ago. we're working on that with ERP right now.


    Cunningham test was 179. To remind, I was afraid to do the 30 day steroids from Dr. L. and so opted not to up til now. ... I'm not convinced all this does not have autoimmune components either. So even if the infection is gone, there is still an autoimmune reaction?

  16. I must say the recent talk here and on PANDAS forum does have me wondering too


    if a parent had been infected with say for example mycoplasma before a child was born, could the child become more suceptible?


    there is a school of thought in GI medicine that Crohn's may be caused by mycoplasma (I think the pneumoniae has been suggested?)

    and I know some TS can be microbial triggered, so that includes mycoplasma


    I had double pneumonia with bronchitis back in 1987 or 88, and my son was born in 1989. my oldest son was tiny when I got sick, but neither he nor my TS husband got pneumonia or were even sick when I got so ill. Oldest son is not TS

    not sure which type pf pneumonia bacteria I was infected with tho as i realize there are several


    I was immediately given antibiotics (injected and oral course) and seemed to make a good recovery. I seldom get colds or respiratory probs and they are over quickly when I do


    I do wonder tho if something in my antibodies to eg mycoplasma may have impacted my son in the womb? tho I would have thought that kind of exposure, plus him being nursed for quite a long time, would have imparted more natural immunity to him?


    any thoughts?


    My TS husband had severe strep as a very young child



    I find this interesting.....now I don't know if my son has myco and we still don't have much evidence of strep, but I too had a bad case of bronchitis that seemed to turn to pneumo because the first abx they gave me (Biaxin) didn't seem to do the trick. I was staying sick and got worse, couldn't even get out of bed, I was married and had to stay at my mothers. this was 1994, I remember because the winter Olympics were going on. After a different abx, I seemed to get better, but then relapsed about a week later and by that time it was walking pneumo, does that mean mycoplasma p.? is that what myco is? walking pneumonia?


    But my son wasn't born until 1999. I don't know what this would mean, however, unless I still had some form of that all this time? don't know, is that possible? ... (reminder, I have fleeting moments of some tic urges like head tightening or tapping)......I have had mycoplasma p. tested for my son recently and it said negative, but the PANDAS doc thinks it was not the exact right test, so we are doing it again. I'll post an update here. but interesting if that could be kind of passed down somehow?

  17. I am certainly not a doctor, but will just say a few things based on my experience:


    antibiotics are needed (full strength at least initially, to rid the infection)


    antibiotics are helpful to prevent future illness (though certainly not 100%)


    there is also thought to be an immune modulating effect of antibiotics




    antibiotics are not always enough to calm the autoimmune aspect, and quell the brain inflammation


    this is why we are all here- really. If antibiotics did the trick, it would be oh so easy.


    For my dd,6, antibiotics worked on her first episode! They were not enough to calm her relapses.

    For dd, 9, who has had this longer- the antibiotics calmed things, maybe, but not enough.


    You certainly could try a different antibiotic, or two antibiotics at a time. You certainly should look for infection if that is what you feel. However, I will tell you, my daughter looked fairly healthy when she had the flu. The day after she recovered, at the start of a pandas relapse- she looked HORRIBLE; pale, dark circles, in a daze. She started steroids after a couple of days of this, and within a couple of doses- she looked healthy again


    I believe pandas episodes, alone, can make your child appear ill.


    The next step is steroids. Then IVIG or PEX. The cunningham test is a really good idea!


    I agree 100%. PANDAS is an immune system that has gone wrong, and antibiotics will only get you so far...next step is to try to address brain inflammation and calm/supress/reboot the immune system---thus the need for additional treatments. Regardless...it will still take time for the brain to heal, and it may do so with just antibiotics, but I think the other treatments will speed the recovery process.


    totally understood and agree. its just that for me, (and I could be wrong) I think I would feel more confident and sure if I could at least know there was evidence of strep or infection to be dealt with. I realize that some say it doesn't matter, for the strep could have been a while back, and I do have that in the history, but if that was three years ago, and there hasn't been strep since, shouldn't my son's symptoms be at least on the way down by now? maybe the damage has been done all these years, but if we look at it as an antibody response, then where is it coming from, and why isn't the abx backing them down. don't know if I'm making sense. I understand, I may have to go to the next level of treatment, but again, I'd feel so much better if I knew there was something concrete to base it on.


    I have some other info re my son's tonsilectomy, and I'll update that on another thread, sorry, don't mean to hijack this thread, but it looked like simplygina and me had a similar experience.



  18. I had that same experience, only it was azith. I can't say there was any remarkable improvment on the first round, but during a two day break, I felt he was almost doing better with no abx those days, and then the next pill started a huge increase in vocal, it was off the wall increased......can't say I know what that was about, but I opted not to continue, and it did calm down the next day.




    so don't want to throw thoughts in you don't want, faith - but i feel you are open to all thoughts and then sort through them and do with what you will. . .


    when i see things you write, i do just think about our experience -- that we had such a horrible experience with azith, where most see good results. our ped at the time was willing to write it off as 'strep over, case closed' and send us on our merry way for years of behavioral treatments. we switched peds, luckily to one who listens, who believed he had a sinus infection, which was confirmed on CT as all six cavities infected and saw 100% improvement on keflex. i'm not trying to convince you of anything - i just really believe that some kids have different reactions to different abx.


    thanks, I do understand, we've talked on this before. right now we did do a course of amoxicillian for post op on the T&A (I know not the best, but that's what the ENT gave us, and I had him off abx prior to this because of the azith experience). I do want to try out another type abx, such as the keflex. I don't see any indication of any sinus trouble here,..was this something out of the blue for you, or there was sinus problems. I forget, did you say that you saw some improvement within a few days? are you doing keflex still?


    only thing I can say about abx, is that somehow, the sound seems to change somewhat, but still totally there.

    don't know if that means anything or is coincidence.

  19. vickie,

    yes I did do that recently. showed nothing, all negative.


    I have a feeling that I may hve been dealing with whatever for too many years, and so abx may just not be something that will ever work for us.



    you say you havn't had the strep there for some months, but here its more like years, lol. well, tht I know of anyway. so here, I don't think strep is the thing for us, or at least its not anymore. I just don't know.

  20. simplygina,

    I can relate to alot of your post and the experience/symptoms you describe. I found it interesting that you said you did a round of augmentin with a couple days break in between and then when you restarted, an increase in symptoms started. I had that same experience, only it was azith. I can't say there was any remarkable improvment on the first round, but during a two day break, I felt he was almost doing better with no abx those days, and then the next pill started a huge increase in vocal, it was off the wall increased......can't say I know what that was about, but I opted not to continue, and it did calm down the next day.



    What I find kind of strange tho, and maybe the others could comment, if your boy was getting sick or you think he had an infection coming, and that was why the tics increased, why would that happen while on abx? tht part I don't understand, when I hear some report that the child gets strep or other even during the abx. isn't the abx supposed to do just that -- prevent strep or infection?


    I feel I have to say that for me, I feel that if things are worse on the abx, then maybe it isn't working. I know some think an improvement in one area means success, but I don't know, I'm still out on that one, as we all know these symptoms all wax and wane, come and go. really hard to gauge if it is because of the abx or not.




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