faith

Thanks for your support everyone.... to update: I want to update a few more observances here......I did not give any more flagyl, and as I mentioned, he seemed to back down the next day, still heard some vocals, but not constant. The next day, however I got confused again, as I was hearing more vocals, more than when I thought he backed down a little....I did say I was giving a starting dose of clonodine, altho I am not sure it would work that fast, but then again, if it was having a good effect, why didn't it sustain? I was getting confused here...... the one variable I didn't take into account was the probiotics.....the morning after he backed down, I again gave him two capsules of probiotics (10 bil) and two in the evening, so 20 bil altogether. long story short, I'm not confinced these probiotics (at least in high dose) didn't have something to do with his large increase. I was giving that in CAlifornia and pretty much started giving him five times what I was doing before, I was really pumping him with it. even as I stopped the antifungal, I was still giving the probiotics. I kind of realized (altho I don't write this down, have to do it off the top of my head)...I had not given him the probiotics on the two first days of the clonodine. So was it the removal of the probiotics that helped him calm a little. because then when I knew I was going to try the flagyl, I again started giving probiotics.... I saw him spike, so I was confused as to wether it the flagyl. since I didn't give any further, why did he spike again? all I can think of is that the high mega doses of probiotics don't agree with him for some reason. is anyone else here giving high probiotics and feeling like their kids are spiking? sometimes we don't suspect something as innocent as a good product like probiotics, but I know on the ts board, over the years, even good supps have not agreed with all our kids. fish oil doesn't work for us, we get an increase. high dose multi vits never worked for us either. this is hard to decipher here. but for now I'm sticking to the conclusion that probiotics, at least at high doses, seemed to contribute spiking of vocal tics in my guy. the day I stopped it and did not give the evening dose of probiotics and then discontinued each day after that, he has stayed at a much better level of vocals,.. it may be a combination of the clonodine as well, but it does seem the probiotics have contributed to it. I am tempted to challenge it, but just can't. surely my husband will beat me, lol...... hope i wasn't too confusing on the above. I am wondering if 'boosting' my son's immune system just isn't right for him..........

caring mom, quick question, can't recall, do you give probiotics? if so, which and how much? Also, what other supps is dd on?

oh mom, so sorry of this, ...but don't fret, because you know the flagyl was helping, and from what it seems like, is now that it is out of her system, she is getting symptoms again, the vocal, right? it is possible it is from the s. boulardi because that's what you added afterwards, so just stop that and see, but I am more inclined to feel it is a backslide from not having the flagyl. you recall I posted that one flagyl pill seemed to exacerbate my son's vocal to a peak, so I am too chicken to continue. he did back down somewhat, but this morning, even without the flagyl, he is seeming to have some more continuous vocals, I don't know what the heck to make of all this. (to remind, I hve had no testing, so was only doing this per hunch and with DAN docs guidance, they feel it is okay to go in and treat without proof)...... I know its difficult, but I think you may have to do some investigating as to why this abx seems to help and why. I don't know how long you can stay on this one. so far it was for clostridium, right? now I'm just wondering why that wouldn't be eradicated after a two week course. but if it is a stubborn thing, perhaps it multiplies pretty fast and you need something more, so see how it goes with another two weeks. it would be very interesting to see if it backs down again.....then you'll go from there. at least you have more flagyl...... oh, one more thing, are you still giving the flucanazole? or that was ended too? maybe the fluc alone is not good? maybe causing too much die off and the body can't handle the toxins? not sure, this is just speculation. good luck, faith

Mary, I've read a little of your dd's history,...just to clarify, when did she have the DT vaccine? and you say her symptoms started 4 years ago? nothing before that ever? I have no doubt that vaccines can contribute, and this one in particular, just my strong hunch from all i've read from parents. my son is due for this right now and I am going to lie down in the street in front of the school buses if they don't accept my exemption letter..... I am inclined to beleive it played a big part in exacerbation of symtoms, wether it is exactly 'PANDAS', not sure, but if a child didn't have signs of pandas before, I do beleive it can definitely cause the nuerological symptoms in 'susceptable' children, especially those who have already exhibited something, however mild... your dd seems to be in the more severe category, with multiple symptoms, including rages? does she have any tics, any vocal tics? even before the vaccine? you say this started at 8, what vaccine did she have at 8, I am under impression this vaccine is due at 11 years old. I am really interested in your experience here and would really like to know more, if you don't mind relaying it, this is something I pay particular interest in. could I ask how you got the DT but not the pertussis part? and how did you get out of that with the school? thanks so much for posting your question and experience. I see your girl seems to be getting better, I do hope it continues.... Faith

Klaire Labs has several good ones. Pro-b complex has acidophilus and bifidum at 5 bil each and their Vital Plex has several different strains at 5 bil and 10 bil, and these do not contain the s. thermo. they do have others that do however. I like these because they are the refridgerated kind, mut mayu be hard to find, I get it in our local health food store. about $20.00 for 100 capsules. theyese alos mix very well in a shot glass of water, I open the capsules.

arial, hello, sorry I'm late to your history, but curious what were the symptoms besides the tic that made you seek treatment? what is the 'treatment', is he on abx now? he is two you say? not clear if he is on the spectrum? Only thing I can say you are lucky (if that's the right word) to look at all this from the beginning when he is this young, many of us have to look way back into the archives of our child's history. what you say about seeing your son's first tic resonated with me, the facial grimace.....we saw that at age 3....darkest day of my life, .....

just to remind of our story -- last june, ds had a completely non-reactive western blot. he was doing okay but stil not healthy. in the fall, he had a quick flu and then relapsed. took a long time to pull out of it. i asked one of his drs if we should re-visit lyme. i really didnt' believe him to have it. i was doing a lot of research. i remember dh saying 'for someone who doesn't think he has lyme, you're pretty focused on it.' that dr. referred us to another dr, experienced with lyme. then, ds seemed to improve. after a terrible school conference, we went to that new dr. in his opinion, based on history - he'd say lyme. i was surprised b/c ds doesn't exhibit "classic" lyme but rather fairly "classic" pandas. not really any tics. this dr is an integrative MD and does a different type of testing. according to his testing, ds has multiple infections. he believes some where along the line, his immune system took a hit and then just couldn't fight off everthing else. not that he is immune comprimised - but that so much was going on, it allowed for other infections to take hold. most lyme drs believe that lyme is so invasive, it creates this situation. so, just my opinion -- but your son really could have everything. i don't think the lyme was creating all these symptoms we were seeing. i think it allowed other infections and we saw on the surface, the problems of those infections. that would explain why were we pretty classic pandas and had 100% remission with first abx. now, some things are common in the general population but don't seem to cause problems. like HHV6, most people will test for it, for a few it is problematic. same with toxoplasma and CMV. so, my son tests for those -- are those what's a problem? no one really knows. we've still treated to rid of the infection. i believe he is currently experiencing a rather intense herx. he started about 48 hours after introducing this anti-viral. he seems to be cycling though symtpoms. first 5 days-ish was ramp up of "normal" behaviors but to an extreme. a few days of back to normal with one eerie calm day in between. then intense ramp up of OCD conatmination with food we've never seen before. that's mellowed but still present, i think getting better each day. yesterday, additional of annoying-like behaviors we haven't seen in a while. i think the only real test will be if all this settles down and he is better than before. for that, only time will tell. faith -- could there have been things in the first few weeks that were ramp-ups but you didn't so much notice them as such until this intenseness? maybe it is herx and its also a cycling but you didn't notice more minor things? I can't say for sure, nothing that was obvious, for he always has something going on that is just part of who he is, so those negative behaviors I don't really gauge much. but you know, I did jot some notes and looking over it now, the first week I did note an increase in vocals, not as bad as this time, and didn't last for two weeks as now, but I wrote that they were 'very apparent', it ws more up and down. there was also some sensation of a feeling of a tickle on his back shoulder blade, he was really agigated by it, wanted me to punch at it and said he felt like getting his fingers 'under ' the bone...... not sure what that was about, but it passed... I just know that after about three weeks and we were in CA the first day, pow...... Maybe he doesn't like California Are you going to try the Flagyl? to update: I was undecided, but I got the script, and yes, last night I did give the flagyl to him. within less than two hours he was again constantly vocal, and this continued till he fell asleep at about 12:30 a.m......what to make of it, I don't know, but he had at least slowed enough to not be constant before this during the day, and so this threw me for a big loop. Any other herx symptom or side effect I could have handled, but not this shrilly constant vocal. I think I am going to not continue until I have definiteve test results.. (I was going on the idea that clostridim/c.diff could be our problem, but never had testing, I asked, but our DAN thought it wasn't useful).. we woke up to some sounds as usual, but as I write, he is at least backed down somewhat to not constant and some longer interval without. I must also tell here that I decided four days ago, to try a very low starting dose of clonodine per our neruo, and had give four days of half pill at night. last night, I decided not to give the clonodine as I was introducing the Flagyl, so....was the vocal increase (which was very very obvious) from the Flagyl (herxing), or was it from not getting his dose of clonodine? (I wouldn't think four days would be enough to have a positive effect if the clonodine was to help, the doc said it would take a while, and to remind the vocals were still there, just not as constant)... I couldn't take it and when it became very apparent that he was waxing or herxing big time, I relented and gave him the clonodine about 11:30 p.m. about three hours after the flagyl. I realize this mucks up my experiment somewhat, but I am desperate here, this vocal is nothing I can toy with right now. any thoughts? ... SF?

right, but our test was just Western Blot, NOT Ignex...........faith

hi, not sure what exactly your question is, but I'm wondering about the blood test and NAET. we've had NAET treatments last year, and it did not require blood testing. she just muscle tested a panel of allergies and we went from there. I, myself would like to continue on, but we treated a number of things to no avail, (at least not on his tics at the time), but I always wonder if there is something I have not yet hit upon. I would go on forever, except that it is of course money each visit. Could you find one that doesn't require a blood test? Faith

momofgirls, could you remind me what you're girl's response to steroid burst was? what treatment are you doing presently for lyme? and you've stopped ivig for now? thanks faith

SFmom, just to clarify, not clear to what you're saying re your child, are you now just investigating lyme, or hve had the testing and are persuing treatment? we have had the lyme on regular western blot and all was negative. havn't had the Igenex....

hi tantrums, you are asking very good questions here and doing all you can to explore whatever may or may not be the issue. that is all you can do. I am kind of in the same boat as you, for me its a toss up, I don't have definitive evidence of PANDAS, yet I've had docs willing to treat as such, and like you, no real improvement. Pandas is a long road, its no quick fix. I know some think it might be a good thing to have this as a direction, but the fact is that not all kids respond, and for what is called pandas right now may encompass a miriad of other autoimmune issues, and they are not very easy to pinpoint. I can tell you I've been here, there, and everywhere. my son's issues are not as bad as what you describe, I deal mostly with tics, mainly vocal, and yes, some other comorbid issues such as attention/focus (which I see as obsessive compulsive in nature), irritability due to sensory, and some plain ocd, but notne of this ever hit the fan except for the vocals, which I am dealing with right now, and this after trying out a yeast regimen and then vacationing in California (dang that Katy Perry, lol), but I don't know what happened, maybe coincidence, maybe reaction to a few weeks on these antifungal/abx, exciteement, allergens, don't know, could be anything (the trigger, the exacerbator, the contributoer, who knows.).. So basically, what I'll tell you is go ahead and explore whatever else you can, our kids have somehting genetic going on no doubt, what ever else is contributing, who knows, but there are many things to explore, i.e. allergies, supplements, yeast, clostridium, dietary, I could go on. you will have to find that golden ticket. For me, I've sort of dead ended on PANDAS, altho I do feel there is something autoimmune going on, we don't have the strep per se, and so do we have those antibodies circulating? don't know. I opted not to do the steroid, as my research pointed to not wanting to take a chance of things getting worse, and I am confident with thate decision. Abx do not seem to help. and even tho this yeast regimen did not seem to help, I was going to change the abx to flagyl for a trial, wondering if clostridium could be our problem. I gave it to him last night and dang, his vocals went to constant within two hours. so I am now deciding not to continue. My bad is that I have not really done testing for these things (yeast/clostridium) I am just going by gut and instinct. I do have DAN doc guiding me on this, and he beleives these tests are not that useful, as they may show false negatives, they just go in and treat due to clinical symptoms. I'm okay with taht, but now I think I am not going to continue this route until I do have something definitive to go on. if I see negative reaction, I don't think it wise to continue. So what am I talking about? I think my best advice to you is try a DAN doc, for they are well versed in biomedical approaches, and you can try a few different things with their guidance. we have done this over the years, can't say anything remarkable has come of it, but doesn't matter, you never know what will be YOUR child's issue. DAN's are used to treating autism, and most of the things they do for autism are the very things we here have looked at for our kids, its all neurologica, its all autoimmune (DANS believe tourettes,pandas, etc. are autoimmune in nature, something is going on).....So I say, find one of those, they know autoimmune, they know PANDAS, they know biomedical. this will give you the oppty to explore other options besides pandas. not saying to abandon pandas, I still keep on top of wht I need to, but abx doesn't seem to help here, and my son's issues are not in the severe category, so I am not going near IVIG until I know more. I do have a PANDAS doc that I trust and he agrees with my decisions. If my son's problem is tourettes, well than its tourettes, we can still find ways to manage it. don't know if that helps,...altho I can say it does sound like your child's history is more pointing toward pandas than we, but I still think you have to explore more, not get stuck on abx and whatever treatements are for PANDAS, I just don't think it's a one size fits all here. Regards Faith

just to remind of our story -- last june, ds had a completely non-reactive western blot. he was doing okay but stil not healthy. in the fall, he had a quick flu and then relapsed. took a long time to pull out of it. i asked one of his drs if we should re-visit lyme. i really didnt' believe him to have it. i was doing a lot of research. i remember dh saying 'for someone who doesn't think he has lyme, you're pretty focused on it.' that dr. referred us to another dr, experienced with lyme. then, ds seemed to improve. after a terrible school conference, we went to that new dr. in his opinion, based on history - he'd say lyme. i was surprised b/c ds doesn't exhibit "classic" lyme but rather fairly "classic" pandas. not really any tics. this dr is an integrative MD and does a different type of testing. according to his testing, ds has multiple infections. he believes some where along the line, his immune system took a hit and then just couldn't fight off everthing else. not that he is immune comprimised - but that so much was going on, it allowed for other infections to take hold. most lyme drs believe that lyme is so invasive, it creates this situation. so, just my opinion -- but your son really could have everything. i don't think the lyme was creating all these symptoms we were seeing. i think it allowed other infections and we saw on the surface, the problems of those infections. that would explain why were we pretty classic pandas and had 100% remission with first abx. now, some things are common in the general population but don't seem to cause problems. like HHV6, most people will test for it, for a few it is problematic. same with toxoplasma and CMV. so, my son tests for those -- are those what's a problem? no one really knows. we've still treated to rid of the infection. i believe he is currently experiencing a rather intense herx. he started about 48 hours after introducing this anti-viral. he seems to be cycling though symtpoms. first 5 days-ish was ramp up of "normal" behaviors but to an extreme. a few days of back to normal with one eerie calm day in between. then intense ramp up of OCD conatmination with food we've never seen before. that's mellowed but still present, i think getting better each day. yesterday, additional of annoying-like behaviors we haven't seen in a while. i think the only real test will be if all this settles down and he is better than before. for that, only time will tell. faith -- could there have been things in the first few weeks that were ramp-ups but you didn't so much notice them as such until this intenseness? maybe it is herx and its also a cycling but you didn't notice more minor things? I can't say for sure, nothing that was obvious, for he always has something going on that is just part of who he is, so those negative behaviors I don't really gauge much. but you know, I did jot some notes and looking over it now, the first week I did note an increase in vocals, not as bad as this time, and didn't last for two weeks as now, but I wrote that they were 'very apparent', it ws more up and down. there was also some sensation of a feeling of a tickle on his back shoulder blade, he was really agigated by it, wanted me to punch at it and said he felt like getting his fingers 'under ' the bone...... not sure what that was about, but it passed... I just know that after about three weeks and we were in CA the first day, pow......

Wendy,what are you using for the lyme like protocol? what abx? Of course now I'm a lttle worried, but if I had to go with my gut and bet on something, I don't think my guy has lyme, I mean I know the testing is not exactly accurate, but clinically, we are just tics and ocd, not as much other symptoms. I mean, he can't have everything.....now what you say abou tthe herxing, I read that it would be in the first week. I get what you say, that the herxing is like after about three weeks, then settles, then starts again? something like that? well, I backed off on the antifungal/neomycin and he did not settle, we were back home for a week and he was still going with his vocal tics every 5 seconds. DA AN doc feels the die off would be in first week or so and that he should have setttled a little after stopping the antifungal. I don't know, this is such a CRAPshoot, . I just have to decide if I should give the flagyl a try. Smarty, good question, btw.

yes, I got results in the mail, but not right away..you'll get them. phas, could you clear your inbox for incoming messages, I have a question for you, thanks, Faith

Need help?....in understanding behaviors?......and how our kids learn? dear CP.....don't you think if I had a clue........... ...... good luck, I know you will be great at this. Fatih

I meant no abx for PANDAS purposes (azith, augmentin, etc.) we did use Neomycin in conjunction with the antifungal (flucanazole), as its supposed to target the bad bacteria. We didn't start the flagyl yet, but it is another abx that they use in the antifungal therapy, so the DAN said it would be fine to try it. I asked because of my lingering thoughts about clostridium and the fact that I had c.diff some years back. who knows really, but I felt it worth a try. Are you saying you think the Neomycin caused herxing? what did you mean by I swear its herxing? If Flagyl is also used for Lyme, oh heavens, do you mean if its in there, I could see some herx? It would be a clue if that happened, but I have nothing re Lyme as of right now. He still has the sounds going, we have been out and about and he seems like he has more control when we're out, its not as constant, but definitely still there. I will know if it ramps up again. I hope I don't kick myself in the azz again after this,.....

I suppose this is possible, but as I've said all roads to lyme are dead ended right now, I would hve to do the Igenex. after the Flagyl and hoping he settles a little, I will certainly keep investigating what I can. thanks.

Yes, we did azith and I felt he increased on that after a few days on it, I eventually stopped, I did not like the effect. Is azith what you are using for the Lyme? I hadn't heard that being Lyme treatent before? Interesing about the lyme results you have had. I'm going to see what this flagyl does and then may address the lyme again, but Western blot showed nothing. I think there was some testing on Dr. T's workup too, also negative, so basically I have nothing right now. thanks so much for the input on the c.diff and flagyl, it gives me something to go on, ....If you don't mind my asking, how do you know the increase you are seeing is not from the ivig and not the azith? many here have symptoms ramp up in the weeks after ivig..... thank

Okay, I hve the script for Flagyl, we saw the DAN today and even tho he didn't feel testing for clostridium was warranted or useful, he agreed to a trial of Flagyl, as this is what they use alongside the flucanazole for the yeast/biofilm regimen. (we were using Neomycin)....I suppose I could try to do the Great Plains test myself, but I may need a docs order for it. I think I will see what happens on the Flagyl. interestingly, I was giving s. boulardi for a while too, mainly because I was pointed toward clostridium a couple months back, and that is what started me on trying the yeast stuff. I'm sure I gave that more than a month on the s. boulardi, but I did give it on vacation too, but not everyday. who knows here how that plays into it. but I'm going to give this a try and see what happens. I am in exactly the same boat, he was going 3-5 seconds, in the house its worse, but wouldn't you know at the doc's he seemed minimal, so not sure what he's doing. I got the DAN to do a swab and culture for strep just to humor me, and he opted to do yet another titer testing on him, even tho we've shown numerous times low titers, never significant. he does know thaqt strep can be asymptomatic tho, he does stress that it is not strep, but the antibodies that are the problem. of course, we all know this, but just wanted to mention that in case some have confusion. thanks for your input mom, you've been a great help....

we did lyme testing with Wesern blot, not Igenex. I'm going to ask again, but for some reason , the DAN doesn't think the stool testing (for yeast anyway) is useful, because of the biofilm protecting the bad bacterias, it will show negative. but maybe he'll agree to see if it shows anything re c.diff, I am really curious, being that I had that when he was about 3 and was hospitalized, ..interesting tht his tics started at that age. probably coincidence, but....he does not show any signs of that tho. what gains did you see with the flagyl, and did they sustain? may I ask why ivig if there was already some good gains with other treatment?

caring mom, is this the first time you are using abx longer term? what was the abx that was given the third time that you say didn't help (when it was just strep)..... Do you feel it is the azith or the flagyl for the clostridium that is making the most change? I am assuming the change you speak of means vocals are way diminished, are they gone?....my son's main problem is vocal and it sounds similar to what you describe. thanks Faith

I don't see that he was ill in any way, he seemed fine in every other way. also, I just wonder about the herxing because he didn't show any other symptom, no other tics got worse, and he didn't have flu like symptoms or tiredness that can sometime be signs of that. On some level I expected something, but not to last this long, and it didn't start right way, I was about three or so weeks into it, so this is really hard to figure out. our DAN has said it may not be that yeast is our problem and could be something else. hard to tell right now. he mentioned wanting to do a cortisone shot on next visit to see if inflammation/allergies have something to do with this, but I am going to have the same concerns I did about the steroids, so.....plus we already did allergy testing with him before, so not sure how useful that would be now. I have a funny feeling the enzyme we used in conjunction may have moved metals around as it contained EDTA, not sure how this plays in it tho. Another thing I got worried about while we were on the plane, I realized I was giving the bentonite in a styrofoam cup, and it made me think that a few times I did mix the charcoal and bentonite in a plastic cup at home, plus the dose I gave on the plane was packed in a small plastic bottle... .. being this pulls toxins out of the body, would it be far fetched to think it drew out toxins from the plastics and styro and I just poured that right into my son's body? the bentonite probably coms in a glass bottle for a reason. geez, I could go on with speculation. i think I have to stay on this break from the antifungal regimen til he calms a little. so many variables is right, i've investigaged and am aware of so many things, that it could be (or not be) anything. I suspect everything, I'd blame the butler, if I had one..... We did test for lymes with Western blot, which was all negative.

I really don't know where strep fits in for us because I just don't think he gets it, I've done swabs and cultures many times when symptoms of tics or ocd seem to increase, and its always negative, so basically I have nothing to go on. .... interesting what you say about the clostridium, is that the same as c. difficile? I don't know that he has that, but having discussion with a few other posters got me on this kick, for I, myself have had c. diff in the past. how did you find about the clostridium? and so the diflucan is okay for your dd because you give it with azith and flagyl? flagyl is for the clostridium, right? maybe I could ask the DAN if he would test for clostridium, but actually he didn't test for yeast, he thinks the testing is not useful. wht is the change that you saw after treating for clostridium? how long did you give flagyl? thanks.