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Posts posted by faith

  1. It also may not be an illness that causes this disorder, but other factors. It is the illness that is the finally part to the equation. Meaning, could kids have PANDAS as part of them but not ever have it activated? Does that makes sense



    this makes sense to me. I look at it like PANDAS is not really an illness in itself but an autoimmune proble where other assaults sort of 'turn it on'. Many kids and adults get strep and virals and pneumonias, etc. but don't necessarily start the process of what PANDAS is, so there has to be some things that come together to create that perfect storm and kind of set the ball rolling. If the symptoms start, (ocd/tics, etc.), then I guess they will remain or get worse as long as that assault is still present or comes back or comes back in some other way. Apparently, once the antibody response is disturbed and begins to attack erroneously (what autoimmune is), it may remain a problem forever, altho there may be ways to manage or reverse it. something like that,...don't really know.....does THAT make sense, :D


    (oh and sorry about the polish joke, that one breaks me up every time, lol.)...



  2. susan,

    what are the shots for, what kind of allergies? environmental? are the allergies real allergies? are they that bad that she needs to be treated with the allergy shots?


    Did you ever look into a natural product called D-Hist? its basically quercetin and some other supplements that naturally work for allergies. a few peeps on the other side of the board have tried this and liked it very much and felt it really helped. you could google it.




    My son has horrible seasonal allergies....i've been waiting to hear if anyone has had success with them...this could be good news, so maybe i will go that route.

    yes the testing is coverd by ins, the drops are not but cost effect is same as zyrtec over the counter and i was told you go ther 1s vist...check up and increase of ingredeants at 3 months then at 6 months and then the 1 year mark....so 4 visits and then annually or by annaul....not every week.


    I looked up d-hist and the ingrediants on one of them show



    Vitamin C (150 mg), Quercetin (200 mg), Stinging Nettles Leaf (200 mg), Bromelain (50 mg), N-Acetyl Cysteine (25 mg)


    Faith, is the last item NAC the same thing mentioned by Caryn.....that would be interesting, iit would seem to tie some things together


    And when you say worked...do you mean for the allergies(whch would be nice) but also for some relief from their condition(s) (which would be great)?


    My boy is 9 going on 10 about 75 lbs...if you do d-hist do you think you could still add a little moreNAC if that is the same thing, that only has 25 mg


    i did find this and it says you need 3x more vitamin c per nac



    so maybe ds could take this product and 25mg more of nac



    ...yes the NAC is the same as what Caryn was mentioning.

    ....and yes, it was the allergy symptoms that seemed to be releived. There was a poster named 'Giselle' who loved the product and felt it helped her sons allergies alot. I did some searching about it a few years back because we did the environmental on my son, he came up mild for a few things and moderate on cat. so my theory at the time was to try some natural allergy treatment and see if it had any positive on his tics, he does not show any traditional allergy symptoms, so I can't attest to that. I don't think it ultimately helped with the tics, if the tics were reactions to these allergens, I really don't know, I was just exploring that angle at the time. The product also comes as D-hist Jr. for younger kids. its all natural, so I think its worth a try for some.


    I suppose you could just try plain quercetin with vit c as well.



  3. Whoa, lightbulb moment! these clementines I speak of.....they came in a wooden crate, and alot of them were kind of going bad already, we could see they had spots and what looked like mold on the place where the leaf would be, whats that called?.....it was funny, my mom was so annoyed when we opened the box (she bought it specifically because my son said he liked them), so upon seeing some of them were bad, she made my husband drive her back to the fruit market to complain and return them. it was so funny, a scene right out of Seinfeld, remember the one where Kramer tries to return the fruit? ..... more funny, was that my mom comes back out of the store and the guy who works there is carrying THREE boxes to our car, lol....and my mom waddling back to the car behind him smiling ......hysterical!.......


    now my point is that some of them were still a little bad, so he gave us the three boxes in order to pick out the ones that were good in order to get our monies worth. so maybe some he ate did have a slight amount of mold beginning on the peel, .... wonder if that was a factor in the increased tics that day. ??


    Wierd, his vocal is changed yet again, now he's gasping and quickly says in a low voice, "oh,yea,oh" and repeats this a few times. now its a lower sound than the shrilly "Ehhh", but its very noticeable, especially when he does it several times in a row, and he's kind of exagerating his facial expression with it too. :P ....its so wierd for me, everytime he changes the vocal, I long for the one before, even tho I hated that one too......I guess I get used to it.


    I have to work on some things pretty fast here, because I am very close to trying a med for him...... :(



  4. Azithromycin doesn't seem to be helping my son, and IVIG was only minimally effective on the first try. Prednisone had a big impact, but we had disturbing side effects and the positive effects were short-lived. A while back our DAN doc tested our ds for Lyme and it was neg, but he was positive for Bartonella, a Lyme co-infection. We have never seen a tick on him and have never seen a bulls-eye rash, so we have not switched to the antibiotics that treat Bartonella yet. But since Azith isn't having an impact that I've seen, maybe we should. Any thoughts?


    I am talking with my cousin a lot about this sort of thing. Her family had Lyme - one of her sons was very severe, but they all had it. THe symptoms he displayed very much resembled the PANDAS symptoms. They Lyme symptoms are very familiar. Bartonella and Babesia apparently are worse than having Lyme - so yes, I think you should see a lyme specialist and have him treated for lyme. I am looking at this now.... as I am beginning to suspect that Lyme, not strep, are at the root of our problem. The treatments for Lyme are more agressive, so even if Lyme wasn't at the root, I am thinking you could kill two birds wtih one stone. It is VERY hard to find a Lyme expert in this country. Most doctors who treat lyme are black-balled from the insurance companies (who don't want to pay for these expensive treatments) and so they report the docs to the state medical boards who then have to investigate them. It's a pretty ugly scene. If you need a doctor name, I am getting some from my cousin.


    Also, my cousin suggested that I read the book "Cure Unknown" and watch the movie "Under Our Skin." I just ordered the book on-line (none of my local bookstores had it) and I also just ordered the movie, which you can get at www.underourskin.com Curious - has anyone read this book or seen this movie?


    For those considering testing their child, FYI the standard tests DO NOT WORK. They may detect Lyme for some, but not reliable. Also you don't want just the result positive or negative - you need the levels/bands or something like that. The best test for Lyme cost $200 - you order it from Ingenectics - you want the IgG and the IgM. They also have Bartonella and Babesia test, but they are more expensive and from what I understand these are best diagnosed with symptoms, becasue even the Igenectics test isn't good enough to detect these reliably.... meaning you could test negative and still have it. Igenectics number is 800-832-3200. I ordered mine and we are tesing my whole family next week. Anyone else currently seeking Lyme treatements?


    Charlotte mom,

    We're not exactly treating for lyme, and I don't even know if I suspect it, but I did get our DAN doc (also an immunologist) to order some immuno work up and being that I mentioned lyme, he did put that on there.

    I don't see the word Bartonella, but I see Babesia. It says lyme antibodies, Erlechia? Babesia, Western Blot, and then other things and then the IGG stuff. Is this sufficient? So Bartonella and Babesia are types of lyme, is that it?



  5. Klaire Labs is a good one with about 5 billion cfu's. I use two of them, one called Vita Plex and one is called Botic Complex, or something like that, but both with 5 bil plus and by Klaire Labs, and have several different strains. they are in the refridgerated section of a health food store. not all stores carry them tho. they come in powder or capsule. I open and empty the capsule into a shot glass of Simply Lemonade and stir, it dissolves well. (about $20 for 100 capsules).




  6. Those results seem right to me. Why were there two ASO? with the ASO, anything below 200 is usually considered normal. The other one seems normal too at 95.


    So Dr. K. also looks at the titers? could you clarify that?


    If you want to look at other posts, click on the name of that user and it should take you to the member profile page. on the left side, click on 'options' and pick what you want, either 'view members posts' or 'view members topics", .. that should give you all the posts and topics they posted.




  7. My 90 lb dd is on 500mg per day split between a.m. and p.m. dosings. She is also on augmentin xr for now at 2000mg per day.



    I too am interested in this. How many folks are talking it daily vs every other day vs vs 5 days on 5 days off, etc?


    Wow...I've not heard of taking both at the same time. Are you seeing any significant results?



    My dd is taking them under the direction of Dr. T. She is improving slowly, but surely. The difference between today and two months ago is astounding, yet she still has a ways to go. It is definitely a sawtoothed recovery. Each time her immune system is stressed she backslides for a few days, though never as bad as she was this fall. Advil is still helping a LOT, as I found out when she did a steroid burst and I stopped the Advil.


    Got to run. anything else you want to know, just ask.



    Is he thinking Lyme might be causing the PANDAS? I think the high doses of multiple antibiotics is typical of a Lyme treatment. Did your dd get an IVIG? How much Advil is she getting and how often. I gave my daughter 400mg of Advil and wham what a difference. I did this twice then the third and fourth time didn't seem to work, so I stopped. Is that just temporary relief... works initially and then stops?



    More often than not I give my dd (90 lbs) 200mg of Advil a.m. and p.m. I occasionally give her an extra if she is struggling. For her, it makes a big difference but I have not stopped giving it to her since I figured out how much it helped, except for the first two days of her steroid burst. (and then because I worried about her stomach) The change is dramatic and it kicks in about a half hour after I give it to her and lasts about 22 hours. I give it twice a day to avoid the difficult time we experienced 22 hours later when giving it only once every 24 hour period.


    We did a 6 day tapering dose of steroids that were given spread out throughout the day. Day one was the best day, at the higher dose. (24mg that day and of that, 8mg in the a.m. which gave us a noticable change in her symptoms.


    My dd tested negative for Lyme. When we went to see Dr. T, my dd was already on 2000mg of Augmentin XR. He has had good luck with Zithromax so he wanted her on that drug. There are however, pockets of Zith resistant strep on the east coast and so I THINK (though I'm not positive) he though it was a good idea to do both, just in case, and also since she was tolerating the Augmentin XR well.


    Late this fall my dd was pretty much non-functional. She could only watch TV and I had to use the remote for her. It took up to 5 hours to get her to brush her teeth, get her pj's on, climb the stairs, get into bed and fall asleep. (she either repeated the whole time or cried because she couldn't do it or raged in agony becasue it was so difficult) She started 20mg Celexa in early Oct. and gained some ground then but still struggled mightily just to get through the day. Ten days into the Celexa she began to do better. We upped it to 40mg and I didn't notice any big changes from that. Nov. 11th she began Augmentin at 1000mg per day. A week later we upped it to 2000mg per day of the XR after reading Saving Sammy.


    Things began to improve slowly but then a setback after a yeast infection scared me and I decided to get an expert on board so we made an apt. with Dr. T and drove to NJ in MId December. He added 500mg of Zith to her regiment, which also includes Probioics, vitamin D2, vitamin B3, Omega 3's, and DHA, as well as Advil and still the Celexa which I'm afraid to change at this point.


    She has continued to improve slowly. She has had two setbacks; the first the yeast infection I mentioned and the second a cold which also coincided with her period. She still has some days that are not as good as others, like today where she struggled to walk more and had to repeat more steps and just felt more frustrated overall. But when I compare today to any day this fall before antibiotics, she is MUCH MUCH MUCH better.


    Today she had some trouble walking and asking reassurance questions. She had a facial tic some. Her vocal one has mostly been gone..though when I hear that sound I always wonder if it is back or just her making a tsk sound like I do when I'm frustrated. So far it hasn't repeated so I think its mostly gone. She did however, shower of her own accord, dress in under 5 minutes (though she repeated some), played on her pc, played wii, watched tv and used the remote, stayed home with her dad (she used to cry if i left), went to let the neighbor's dog out and went into the house herself alone and got the dog from its crate. She did say she hated her stupid self once but that used to be a nightly occurance said while raging and crying and it was said over and over while she asked me continually to just kill her. Today she said it once, then let it pass and moved on. no tears. no raging.


    oh, and she has not had ivig nor do I know if she could get it. She tested normal on her aso titers, lyme, and the tests she had done to see if her immune system was working correctly. She is a child who was never sick much.


    More than you wanted to know?





    so do I understand correctly--your daughter takes 2000 Augmentin XR, 'plus' the 500 Azith? both at the same time? and how long now? did the doc say how long to continue that?


    when you talk of the Advil, do you mean her symptoms all get better for a bit, or just the tics?


    CharlotteMom, same question.... you see a dramatic improvement in?


    I get confused about Advil, ... does it reduce inflammation, or does it reduce "pain" from inflammation?... ;)




  8. Not positive, but I think once they found the right abx and dose, he remained on it for four years. From onset at age 11, I'm guessing it was about a year before they figured out the right treatment and abx. From what I skimmed, it looked like he got better pretty fast, but did have some setbacks when they tried to reduce the dose. once they realized he was better on the high dose, he made gains. he did also use a couple of meds tho, which were weaned, but he remained on strattera.

  9. FYI all, just want to point out that T&A is NOT the protocol for PANDAS just to 'see' if there is strep in the tonsils. that is just a gamble, it has not been proven effective even on kids who regularly get strep and sore throats. you don't just get the tonsils out just to see unless there is adequate reason. I don't want anyone getting the idea that is fact. It has helped some who regularly get strep, but not all.


    ajcire's daughter is suggested for T&A because she gets strep often, she is not the PANDAS child, but they are weighing in if that child is infecting the PANDAS son.


    my son is suggested strictly for the large tonsils and breathing and considering the 'failure to thrive' due to his light weight, it was not based on anything regarding PANDAS, if not for this, it would not have been suggested, we have no strep or titers to warrant it.


    just want to clarify that for other posters.



  10. well..you probably already heard the one about the lampshade in the funeral parlor, so.... :)



    It does sound like a reaction, especially if he washed it off. I'll tell you that last weekend, my son had like 7 clementines (thos tiny tangerine things)... and I don't usually give him too much fruit at all and do like to stay away from sals from earlier experiences, but from Saturday to Sunday afternoon, he had about 6 or 7. he was definitely ticcing more and making way more noises, I was sure of it. I noticed because we were at my mothers to sleep over and I would not have gone if he was doing noticeable tics, I usually lie low on that. but by the next afternoon, it was alot and my mother commented. I really have a feeling it was those clementines. I didn't give him any more since then. he still has vocals, of course, but that day was more.


    I'd give him some ofthe Alka gold, the bicarbonate of soda stuff? even tho its our own little experiment, I tend to think it kind of neutralizes acids or possible food sensitivities. we've discussed this before, I think I read it used in this manner from the book "IS this your Child", by Doris Rapp. she says if you think you're child is having a reaciton to foods (more in the way of behavioral tho) then give bicarbonate of soda of Alka Seltzer gold, which contains that, and it may calm the reaction. can't hurt.


    It may not be the orange he's allergic to or sensitive to, but the oil in the zest...that's kind of more concentrated.




  11. CM,

    do you mean about checking out the adenoids for strep once they're out? I don't think they can do that, I asked about the tonsils and he said no one is really doing that, it would be more for a study. with the adenoids tho, I would think they will biopsy the cyst for anything suspicious.


    we were looking at tonsils because my son's are quite big and I wondered if it had any bearing on our PANDAS search, i.e. could there be strep hiding in there? but again, it didn't look like there was a way to find out. don't know if that's what you're asking, but that's why I went.



  12. yes, what she is describing is how it works. when she says she feels better, the premise is that she is satisfying the urge, but the urge does not always alleviate with just one sound or tic, the feeling keeps coming back and back, that's why the repetitive tics. As far as being able to control it, that is so, for its not an automatic thing that they can't control, but controlling it or holding it in, builds up the urge or tension, and eventually they'll want to let it out.


    My feeling is that as they get older, they tend to have more control, where it doesn't bother them as much if they have to hold it for a bit. also, they can get a little savy about 'masking' them, in other words doing it in a way that makes it look like it is a natural movement or sound.


    When this sound started after the last infection, was she treated with abx, or is she on them already, sorry, don't recall, ... how long ago was that?



  13. just re your history,

    well that is at least telling that the increased symptoms coincided with some strep. I have that same history as well. but no strep connection in the past three years that I am aware of. low titers as well.


    what I find interesting to note is that you say there were two strep episodes? they were confirmed, yes?

    but subsequent titers testing showed normal? so they did not mount? I am wondering if that proves anything to the mainstream docs? shouldn't it be automatic if we know there was a definite strep infection? do they have an explanation as to why the titers didn't verify that? (I know that some don't mount a response, but I'm just playing devils advocate here for the docs who are looking at strep titers as the telltale sign).


    vocals are the force to be reckoned with in my son, they are the one tic that always sticks around, so I think no one can blame me for being afraid that something may increase that. I don't know if this is all coincidence, but hearing that you also had a vocal start after pred makes me wonder. coincidence? maybe a gets worse before better? don't know?


    Would you consider going off abx for a bit to see if things get better? since you say its not really helping dramatically, maybe a trial of no abx might be interesting? (this isn't advice, just a thought).



  14. wow.....apparently I do have a problem....... :wacko:


    sorry, I have so many directions and thoughts in my head, and if I don't hold on to the messages, than I'm throwing your thoughts out with the bathwater! your feedback is important to me....together, we are figuring out the universe here!!......... :wacko


    okay, I guess I can get rid of some of the Dr. Sims stuff.... :lol:, that's kind of old news. I'll print out some of the important stuff. I have a need to keep everyone's history straight in my head, you don't think I can manage that without notes, do you?...lol..... you're stories are important to me...really......


    Now if you peeps would be more cooperative and fill out that "Member Profile" thread I started a while back, that fell flat on its butt........perhaps this would alleviate some of the problem here....... ^_^

  15. susan,

    what are the shots for, what kind of allergies? environmental? are the allergies real allergies? are they that bad that she needs to be treated with the allergy shots?


    Did you ever look into a natural product called D-Hist? its basically quercetin and some other supplements that naturally work for allergies. a few peeps on the other side of the board have tried this and liked it very much and felt it really helped. you could google it.



  16. monarchat,

    So basically the abx never really had much of an effect on the tics? and both during and after steroids, no real improvement and maybe worse?


    Don't know if you recall, but "Char" seems to have had the same experience, when she started the pred she felt her son's tics got worse, and it was also a snorting sound which he'd never had before. I think her experience is what kind of scared me off of trying the steroids. you could contact her if you want to know more.


    could you remind me of your son's PANDA history,...does he get strep or have hi titers? how long has he had tics?



  17. you all give good points and things to think about....


    I just spoke to a freind over the phone whose son recently had the tonsils out (14 yrs old), and she said that he always had big tonsils, but only started getting strep when older, so interesting. don't want that to suddenly be a problem when it wasn't before. even sleep problems could get worse as they get older.....


    I think I am not going to give myself a chance to flounder,...that's it...I'm DOIN it!!.... :unsure:




  18. Vocal wasn't my son's first tic, but once it showed up (around 5 or 6) it's been kind of a mainstay. (sorry). its been the one tic that doesn't want to hit the high road. sometimes its better and it has changed in sound, but even tho his eye twitches have come and gone and head tics come and gone, I can't say the vocal was every really gone, he always has some sound going on.


    hve you tried no dairy for that? at one point in time, when he first started it, I felt it had some benefit, but only for a little while. But I do think no dairy is worth a try for vocals, since dairy produces mucious and it might be a sensory thing. worht a try.



  19. I'll look for info on that connection. but a psychologist told me the apnea/ADHD-like symptom connection.


    I'm sorry, Faith, but I think the eating thing is more than tonsils. That sounds like an ex-friend of mine in high school. She had anorexia. She even set her watch in front of her so she can time in between bites. Also, the baggy clothes thing, you say it's fashion and "feeling" thing, but some people with eating disorders cover up their bodies with baggy clothes so because they are self conscious. How does he perceive himself overall? Does he exaggerate every flaw he has? Does he avoid mirrors?


    I really don't want to scare you, but I just don't know...maybe it's my long distance mommy gut about your son. If the tonsils help, then, hey, that would be awesome!


    As for abs post surgery, I think the timeframe on that varies by doctor. Talk about that ahead of time. the lonegr, the better.


    I agree, there's more to it than this. but nice if a little peice of it would be fixed. if he gained a little weight, he might feel better, I know he desperately wants to, he says he wants to, and does not like being small, he mentions it, that he sees everyone is bigger than him and weighs more. but he doesn't do anything about it as far as eating, I tell him the only way to gain weight is by eating, its not like he piles it in and nothing happens, I can see he eats less than I do. with eating slow, he probably gets full faster, you know how they say if you eat fast you put more food in than you really need because it takes about 25 minutes for the message to get to the brain that you are full, something like that. But yes, he does wear bigger clothes to hide that he is skinny, no doubt. Very shortly, next week, we will be starting therapy for OCD for him, and this doc is supposed to be one of the best, so maybe he'll be able to address some of that and see where he stands. Really he is a good looking boy, small features, very cute, but at this age, all they see is their flaws.....really I am getting a little nervous, especially when I see his little riblets sticking out. :unsure:

  20. TAKE THEM OUT!!!


    My son had labored breathing also....things were sooooo much better for him once we removed everything....tonsils and adenoids! He was much happier and healthier......if I could send you a before and after t/a, you would be amazed.Before...skinny, drawn face, circles under eyes.........only 6 months later...filled out, glowing face, no circles.


    He is the same age as your son and weighs 100 lbs....he is also pretty tall (not heavy.......just right)


    Dr L was glad they were removed from a PANDAS point of view and recommended removal for our younger son....already saw ENT....appoved for removal and waiting to set up the surgery.


    Thia one Faith.....yes, take them out!



    100 lbs? very interesting. so you say he grew alot better after? did he start eating better?

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