faith
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We just added zith to augmentin on Monday. I stopped the aug. today though....bad tummy/yeast (down there) problems.
Are you giving probiotics daily in between doses of Antibiotics?
Lots of probiotics and yogurt (too bad I didn't buy stock in Yoplait) + antifungals. I've just got her on the zith now. 2 days off the augmentin and the yeast has drastically improved. I don't know if it does the same to others- the yeast flared earlier, when she was still on the rifampin+augmentin, then we treated with diflucan after finishing the rifampin. Stayed on the augmentin, could not get the yeast to clear. When we added the zith on Monday, we were supposed to wait until Sunday to stop augmentin. So I guess I quit a few days early.
peg,
sorry, could you clarify your above post. what did you mean by going off augmentin and the yeast cleared in two days? is that possible, just by being off antibiotics? or was it treatment with diflucan? is that what you meant?
and what is rifampin and what does it do? thanks.
EDIT: oh, I see by your above reply to Angela that you may be talking about vaginal yeast? oh, then I can see the symptoms can be monitored, but are you also talking of gut yeast?
Also, when you went off the augmentin, did any symptoms come back, or stay the same, or did you go o another abx?
Faith
Rifampin is a bacteriocidal abx that works intracellularly, and is usually used for tuberculosis in combo w/ other abx.
We were on the rifampin+875mg 2x/day of augmentin. This for 10 days, after which we stayed on the augmentin. The vag. yeast showed up @ day 8 into the combo, but had to wait til the rifampin was finished to do diflucan, as they cannot be taken together. So, did the diflucan and continued on augmentin. On days 9&10 of the combo, and the day after- despite the yeast, we had 3 very good days of low PANDAS symptoms. Then, still on the augmentin, PANDAS symptoms began to flare again and after a week, I was back in the doc's office begging for rifampin like an abx junkie! What the doctor decided to do (rifampin is dangerous to the liver) is 500mg/day of zith for 5 days, then switch to every other day, and continue the augmentin for another 7 days. I quit the augmentin after 5 days instead- after another dose of diflucan. Things simmered down after that. She's still on 500mg. zith every other day. The yeast is much improved, especially the yeasty behaviors.
looking at this kind of makes me think the diflucan was the winner? how is she doing now just on azith?
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chodnett,
I wish I could give a good reply but I'm kind of new and sketchy on all this as well. but bumping up in case someone can give you something.
If augmentin is the antibiotic that works for some, it is to basically keep strep away, thus keeping the 'antibodies' that misfiring and attacking the brain down. apparently it is the antibodies that are causing the problems. so keeping infection away, keeps the antibodies down. farther than that, I can't really grasp yet, but there may be underlying infection for some that is not detected, and high doses of this (or another abx), it may be able to erradicate that. However, I'm not clear on how it helps if viral is the component, because antibiotics don't really work on that. Some here can attest to symptoms of tics, ocd, rage behavior, etc. being calmed by antibiotic usage. I have tried two tho, and don't have anything wonderful to report, altho my son has had symptoms for seven years, so that may be factor, don't know.
could you tell us about your child's symptoms? do you believe PANDAS is a consideration?
Faith
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DS has been on 250mg/day of azith for about 3 months and we've had a lot of ups and downs. I've seen tremendous results at times, but things just aren't getting consistently better and he's in a downward spiral now. His ped has agreed to switch him to 2000mg/day of Augmentin.
I had such high hopes for azith, but we do live in Massachusetts and according to what I read by Swedo there are strep strains in the north east that are resistant to azith. Maybe that's the issue. I thought about asking to raise the dose of azith, but decided to try the augmentin. Has anyone else made this switch? Do you think it would have been better to try a higher dose of azith first?
PANDAS makes me constantly second guess myself. Aghh!
I am also working on getting an appt with Dr. Robert Fuhlbrigge at Children's Hospital in Boston, but he won't have an appt til February.
Azith does not seem to be working for us here, I'll post about it shortly, but just want to make sure my observations are correct and not just a one or two day fluke. (p.s. we are east coast as well). already did augmentin for a month without any considerable results.
Faith
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We just added zith to augmentin on Monday. I stopped the aug. today though....bad tummy/yeast (down there) problems.
Are you giving probiotics daily in between doses of Antibiotics?
Lots of probiotics and yogurt (too bad I didn't buy stock in Yoplait) + antifungals. I've just got her on the zith now. 2 days off the augmentin and the yeast has drastically improved. I don't know if it does the same to others- the yeast flared earlier, when she was still on the rifampin+augmentin, then we treated with diflucan after finishing the rifampin. Stayed on the augmentin, could not get the yeast to clear. When we added the zith on Monday, we were supposed to wait until Sunday to stop augmentin. So I guess I quit a few days early.
peg,
sorry, could you clarify your above post. what did you mean by going off augmentin and the yeast cleared in two days? is that possible, just by being off antibiotics? or was it treatment with diflucan? is that what you meant?
and what is rifampin and what does it do? thanks.
EDIT: oh, I see by your above reply to Angela that you may be talking about vaginal yeast? oh, then I can see the symptoms can be monitored, but are you also talking of gut yeast?
Also, when you went off the augmentin, did any symptoms come back, or stay the same, or did you go o another abx?
Faith
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We just got back from seeing Dr. Trifiletti and when we went my dd was already on 2000mg of Augmentin XR per our family doctor. He added 500mg of Azithromycin per day. We'll start that tonight and see how it goes.
Angela
Angela,
do you mean that you're going to give the 2000 mg. Augmentin AND the 500 azithromycin at the same time? or do you mean this is a switch?
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cheri,
Kayanne has a good point? many of us talk of teeth problems being a trigger for tics, .. is it possible there was an infection, or was this to just 'prevent' infection' just in case? how long did the tics spike in relation to the 5 days of azith? just curious.
Faith
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abbe,
could you tell me more about the pyroluria. that is one test I keep neglecting to do, don't know why. but are you saying that since you supplemented for that, it has helped the tics greatly? tic free you say? what are you giving and how much? thanks.
Cheri, re the olive leaf. is that how you give it? for a week only? I was looking into that a few weeks ago, and I got confused about what the nutritional advisor at the vit store was telling me. I thought it acted like an anti-viral, is that correct? he did also say you're not really supposed to take it every day longterm, and that it basically knocks out whatever is 'already there' in terms of viral infection, not really as a 'prohibitor' of getting ill. does that sound right? could you give me a quick crash course on what you know. I did get a bottle of SolRay olive leaf, 250 mg. capsules, but havn't given it yet. thanks.
Fixit, so you DO see dramatic improvement on abx, despite the initial reaction to the dye? how long did it initially take to see improvement, especially in tics? any vocal?
Faith
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hi chap,
I want to respond, but the only answer I can come up with is... who the @#$% knows?!!!!!
..........sorry..... ....I know my son fits the criteria of tourettes, and he has comorbid issues. if it is PANDAS induced, I'm still investigating. I got on the path because he has so many symptoms that aren't getting any better. so far he is not responding to abx, and I'm kind of cautious about other types of treatment, as well as weary of the difficulties of finding and working with doctors who are well versed in this. CP is right, there is so much information, it is hard to grasp, but I'm trying.
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Tatoomom,
hi, I don't really have any advice, but just wanted to let you know we have a very similar presentation and testing results, except for the H1N1, my son didn't have that. we are low on titers and always test neg on strep tests, just had one last week with a new pediatrician. I'm also going by symptoms and past illness, which I can only attest to one strep about three years ago. after that it is all viral. I am doing abx now, tried a month of augmentin, and now into a month of Zithromax. so far I can't attest to any real improvement of existing symptoms, I'd say he's pretty much status quo. I guess the advice I'd give is to see the closest PANDAS doc and see what they say. I think its a clinical picture, but kind of confusing tho, I wish I was seeing some improvement on the abx, or at least had a positve strep or titers to at least make me feel like I am doing the right thing. If my son's symptoms were milder and not of concern, I think I would not persue this, but I felt like something else might be going on, so I'm doing what I have to do, least invasive first, altho I'm very cautious.
Faith
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okay Mary, but no cutting in line at the tiki bar, okay? .......
) wow, positive strep test you say? wild. how long before this test did you see tics starting to increase? keep us posted on how the abx course works out.
Faith
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thank you Cheri, all those manganese rich, and oh what a surprise, he basically eats none of them,...
(he's the underweight guy, remember?)trq, wht is bilrubin indicative of? does your dd show any focus/attention problems?
Now the doc didn't get back to me today yet, so I couldn't clarify anything. I am not sure I understood correctly about the liver toxicity. don't know if he said it showed hi liver enzymes or that it could due to the hi manganese. I guess I'm not clear on if these are one issue or two different. I will clarify this and let you know.
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I've recently been to a new pediatrician, thinking about switching, and on the first visit last week, he took some blood. He called and told me my son was showing a slight elevation of manganese. and I'm a little nervous here, because he said something that the liver is showing some toxicity, (didn't quite get if he thought it was from the manganese or just in general). He beleives that manganese can cause neurological symptoms. I know we've discussed that here and am already enlightened on that. however, I'm wondering how my son's level could be elevated? I don't give him that? where would he get that from? He asked if we live near industrial or factories? don't think so, altho my husband works at the airport, he wonders if that could be a factor. I also know that a couple of years back, our naturopath gave us a mineral kit and I gave him drops of the different minerals that he seemed deficient of, and I know manganese was one of them. I told him this and he said "oh, that's not good"...
This doctor seems to be a little clued in on tourettes and at least he didn't just wave me off and want to give me a prescription, at least he seems to have some things he likes to look for before he jumps and treats with meds. He mentioned also that allergies could contribute to tics, so he was looking at the blood for allergies as well. Interesting, because my ped would have balked at that suggestion, and the only other place I could get that done was thru a DAN doc, which I did a few years back, but it was not a blood test, it was with the needles. He also knows of PANDAS. he did do our titers testing again because I havn't done that in a few years, but it seems the results came in normal yet again. I basically wanted to have a strep test done with someone local, (as some of you may know I am looking into PANDAS as well at the present time and just wanted to see if my son's recent behaviors could be attributed to an asymptomatic strep, however it was, as usual, negative as well). Regarding PANDAS, I did not mention at this visit that my son was already on two months of antibiotics, for I wanted to get his take on all this first.
, heavens, what if the liver toxicity is from that? I'm scared. He is going to call me back to give me a rec to see a doctor of metabolic issues? not sure who or what yet. Anyone have any ideas, or know anything about what you do in a case like this? Anyone come across anything like this before? This doctor is kind of a fast talker, so hard for one like me who has a million questions.....
thanks
Faith
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T.Mom,
thanks so much for that detailed info, it really helps to get an overview of someone's history.
but owww
, now I have to ask about the prozac? when was this introduced? in the beginning of it all? were the episodes of regression while she was on that? I mean, how do you know it isn't the prozac that is the frontrunner? would you mind if I asked what the experience of that has been? any side effects? I ask because the new pediatrician that I have recently consulted (who is knowledgeable of PANDAS/tourettes, and was willing to kind of take over and participate in figuring out where my son stands) has mentioned prozac as a possibility. we're not there yet, but he sees kids with tics, ocd, etc. have much anxiety about all this and I guess it kind of helps with the mood swings? I know my son does get quite indignant when his tics or issues are mentioned by me. He is 10 1/2 and is beginning to know he has some problems, so the can get quite agitated by all of this. as others have said, we sometimes 'walk on eggshells' so as not to antagonize the issue. thus far I have not given any meds all these years, and I'm pretty skiddish about them. only remotely considering or researching it now because he is getting older, schoolwork is more demanding, I really don't want to go there, but, well, things are not exactly looking up around here.... thanks so much,
Faith
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joan,
click on 'options' at the top right of the message box and click 'standard form' .... maybe that's where you lost some posts. not sure if you're talking about that or a pm. but try that and you may see all the posts again.
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Diana,
thank you so much for that info. are you saying that abx also work on these other comorbid illnesses? that there is some bacterial infection going on somewhere, and that abx should eventually help clear that? I think we're about 45 days on two different abx, but my son's symptoms are still blatantly there,, mostly tics, with vocal being the prominent one.
thanks
Faith
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T.Mom,
I don't recall if I've asked this before, but when you had to do the full strengh for more than a month, was this during active strep infection, or just doing antibiotics randomly. I mean, does an 'exacerbation' mean that there was an illness at that time, or you were just going by the symptoms?
Thanks
Faith
Hi Faith--
The "3 exacerbations" that I was referring to were OCD and tics that came on with either cold illnesses or sinustis. She got sick 3 times (high temperatures, congestion) and the OCD/ticcing came back each time that fall season--It was a nightmare.
Each time antibiotics (full strength Amoxicillan) had an obvious very positive affect on the OCD/ticcing. This, IMO, is the Ps "construct." That after an initial strep infection it is possible that other illnesses may trigger the same brain inflammation (Swedo made reference to this) -- and it is the inflammation that must be quelled.
The time we finally decided to TRY antibiotics for a month, our d had a very bad cold (102 temp) and had been on 10 days of abx...once she came off of those 10 days, the doctor suggested going to prophylactic dose. * However, when we dropped to half-strength, at that point her OCD/ticcing came back full-force and much worst! We upped the abx to full strength again and within 4 days she was able to go back to school (she had been entirely incapacitated by OCD.)
I obviously really believe the antibiotics are key in successful treatment of Pandas. For us it was certainly a relatively benign risk to take and well worth it--No bad reactions thankfully.
Thanks T.Mom,
Did your daughter ever show high titers, just curious? did you (or the doctor) ever come to any conclusion as to why this abx seems to help with symtoms as long as she's on it? did that doc ever have any explanation, or you just go with it? I mean once the infection is gone, I really wish we knew what these antibiotics were doing to keep these symtoms away. there has to be something else other than keeping infection away. I know we've discussed this alot here, but its all speculation.
Now thus far I am not having any success on a month of augmentin and almost a month on azith. I also know there is no proof of current strep infection in my son. I am currently reading over the book 'saving sammy' and see that for him it was the titers that told the story. we have low titers. I wonder if the success on abx is for those that show high titers. (not saying others won't benefit, but maybe the ones who have the obvious benefit from abx and decline when going off, are the ones with high titers?).
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(except for the cigarette smoking, drunk Santa Clauses and grafitti which all make her very uncomfortable ).
eh, ya get used to it...... what's Christmas without a drunken Santa Claus, I say!......
..... susan, why did you travel to see Dr. T.? was this for second opinion? what abx are your girls taking presently? and they are doing well you said? so whatever you talked about was for future? do you want to persue anything else, or are your girls doing well enough for now? what will these tests he wants you to get reveal? if he gives you any change in abx, will you have to go back to him, or do you have another doctor in your area that you work with? was the office crowded, or is he just getting alot of phone and e-mail inquiries?
thanks.
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My son was already ticcing before starting any adhd medicine. We tried focalin xr and his tics worsened. We then tried straterra because his ped. said it was the only med. for adhd that wasnt suppose to make tics worse. I can say they didnt really worsen, but didn't get better either.
Did it help with the ADD? focus/attention/getting things done? are you still giving that? or no?
We struggle with alot of attention/time management problems here. not clear if it is a separate thing or due to tics and ocd. (we've not used any meds at all.)
thanks.
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mom2ck,
I've been thru the same as you describe, but I guess its necessary to explore all the avenues if we want to try and treat this via the natural route. You never really know what will be the issue that needs attention and may be the key to alleviating or managing these symptoms. some have success, some do not. I have had moderate success, but not absolute. I've had problems doing dietary in recent year because my son is super skinny and is under the growth chart for his age, so I cannot keep much away from him except obvious junk, I've had to abandon much of it in order to get his weight up. Some supplements have seemed to aggravate some symptoms. Its all trial and error really. What I did was take what I could from each practioner and then move on when I didn't think I could go any further. I don't want to keep on "trying this" and "trying that", I didn't really need their brainstorming, I pretty much had enough of my own, lol. So I'd say when deciding to go another route, you pretty much have to get with the guy who does that particular thing. Take what you need, wether it be certain tests, treatment, whatever, and if it helps, great, if it doesn't, then move on. yes, some of this does cost a bit, but if we don't want to use traditional medications, unfortunately I guess its the only way.
what things have you tried aside from what you mentioned above? if you see some things helping, its better than going on meds.
Faith
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Hi and welcome
usually with TS the tics wax and wane and different tics come and go, so it would be unusual IMHO for a TS diagnosis for just one continuous tic? Do be very cautious if the neuro suggests meds for the tic!
you may also want to post on our PANDAS forum as the parents there are best to answer those questions for you
the anecdotal reports we have here definitely suggest that for some kids, vaccinations can be a big tic trigger!
I have a link in my signature below on what has helped my son
not sure if you already have Sheila's book, but I would highly recommend it
http://www.latitudes.org/book.html
hope you find the answers you need to help your son
Cheri - Thanks for your reply! I do plan to order Sheila's book. We have already changed diet (gone organic, avoid HFCS and MSG). We also started a multi vitamin and mag taurate supplement, plus occasional probiotics.
The reason I suspect TS is because he has had 2 other tics that have come and gone (one motor, one vocal) in addition to the mouth opening tic (the one that has been constant). He had a grimace tic in Feb. that lasted about 2-3 weeks and a breathing tic in Aug. that lasted approx. 6 weeks. I just thought it was odd that he has the one tic that is constant while the others have come and gone.
Has anyone else had this experience with one tic persisting while others come and go?
I can say that my son pretty much always has the vocal that began as a "mmm" at about 4 or 5? before and after this, most motor tics are eye/head/neck, they seem to shift around, resolve for a while and come back....but the vocal stays and has changed in the sound going from mild to pretty much at its worst right now. he is currently 10 1/2. ( I will add that I am currently exploring the PANDAS route myself, but cannot attest to any results on antibiotics as yet.).
Faith
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I am trying azith currently for my son 10 1/2, 53 lbs. the dose is 250 mg. 1x day. (I believe th 250 is the standard dose). its about 15 days so far and I don't think I can report any improvement. (tics, vocal and head/neck, ocd, etc)... before this we did augmentin at 1000 mg. per day for a month. we are kind of new to treating as PANDAS, but dealing with these issues since he is 3 1/2.
please keep us posted how it goes for you.
Faith
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Well I think I may have jumped the gun a bit. Today is not looking as rosey as last night. Still some overall improvement, but whiney as all get out and obsessively coloring and wanting ME to do the figures for him because his aren't right. Dang it!! I shouldn't have let myself get my hopes up so much so quickly. It was still SOOOO nice last night to see him as he used to be and gives me hope overall.
Tantrums --
Don't give up hope! Like you, we had that first big "bump" in Return To Our Real Son right after we first started the antibiotics, but the blush came off our rose, too, over time. So much so, in fact, that I began to question whether or not the antibiotics were actually doing anything at all, or if it was all psychosymatic because we all WANTED them to work so badly!!
But when we took him off of them after 4 weeks, it only took about 10 days for some of the old behaviors to return in force. In effect, even though his improvement while on the abx had stopped being "exponential" as it had at first appeared it could be, the improvement had nonetheless been there, sneaking in. But it's subtlety was such that we wound up disregarding it. But, true to the idea that sometimes you don't value what you have until you've lost it, when the behaviors began their return when we took him off the abx, we realized we needed to put him back on and keep him on.
I even went back to "Saving Sammy" and did some rereading; my dad had read it, too, when we were first deciding to try abx for our son, and I recalled him mentioning that Sammy's return to health was marked by jigs and jags in his recovery, fits and starts. Of course, I had been so encouraged by the overall information and outcome of the book, my initial memory had just sort of ignored the points at which Sammy fell back, lost a little ground, etc., only to come back again and move on.
So, long way of saying, don't get discouraged by the backward bumps! It happened to Sammy, the Poster Child for what positive abx intervention can do in these cases, it's happened to my son, and it probably happens to most. I've decided to try what Beth Maloney did; in the journal we're keeping of our son's progress, as well as specifics when I have time to enter them, I'm just noting the overall "good" days from the "bad." When you can see that the "good" days are increasing in frequency versus the "bad," it'll help shore up your resolve, I think!
mom,
when you say the old behaviors returned, do you mean exactly as they were before, or it seemed worse?
I think I have this fear that even if the antibiotics don't do anything 'dramatic' and then you take them off - that it may act as a dam, keeping back some antibodies, which were kind of just hanging around and causing some trouble, so this build up of antibodies is held back by the dam (antibiotics) and then when the abx is taken away, the dam is now overtaken by all the antibodies that have been held back and now rush in double and triple what it was before and this is what makes things worse? is this a bad analogy? its just my own thought. Even tho I see no real improvment on these antibiotics after about six weeks, I have this fear that if I stop, that he will be worse then ever before. is that possible?.....
Faith
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worried dad,
forgive me, I must put this question out there, ... if a med like strattera is introduced, how do you know which is helping, is it the abx or is it the strattera? do we know if 'Sammy' is still on the strattera? If the augmentin was working so well, why did he need the med? It just worries me about the abx, if it doesn't work dramatically, then we start introducting other interventions, so how do we know what is the winner? If you give the strattera and he improves greatly, will you think it is the abx or will you give credit to the med? even right now, I wonder if I should even give additional supplements because I want to gauge the full impact of the abx, one way or the other.
This question for all on abx as well....
thanks
Faith
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Yes, the more adults who chime in on this, the better! Maybe it's not just PANDAS; maybe it's ANDAS! ... at least you didn't say GANDAS, (geriatric).......
but as you say, some adults do not really have significant enough symptoms to warrant treatment, I know I wouldn't bother with it for fear of making things more comlicated, as adults we will start to have other health issues added to the mix and some may take meds for that, so I wouldn't want to start mixing and adding to all that. ... AND there is also the premise that these issues of tics, ocd or other symptoms, weither it be PANDAS (autoimune related) or not, usually trend downward after puberty and sometimes totally resolve. altho I can see where 'minor residual' behaviors could be left. So this is a little hard to gauge (the adult version) since symptoms drop off in severity in adulthood. But I would still be interested to see what happens in those with suspected symptoms that have gone on from childhood into adulthood.
Also, momtoocdson, I find it somewhat interesting that your boy has high ASO titers (have you also had the Dnase? as they are significant too, maybe moreso), and you say he's had no known infection. But I just want to correct you that these titers don't indicate a 'lingering infection', but seems to indicate there has been one 'in the past'. altho I guess lingering might be a possibility as well, don't know, we are all kind of guessing on this one.
When Swedo says that titers are not that indicative of PANDAS, it means that if titers are 'low', it may not mean anything significant, for it could still be PANDAS, but I think if there ARE high titers, that kind of says something, I think. I believe that 'Sammy' had the high titers, perhaps that is why he responded to the antibiotics?
Faith
..........sorry..... 
....
This doctor seems to be a little clued in on tourettes and at least he didn't just wave me off and want to give me a prescription, at least he seems to have some things he likes to look for before he jumps and treats with meds. He mentioned also that allergies could contribute to tics, so he was looking at the blood for allergies as well. Interesting, because my ped would have balked at that suggestion, and the only other place I could get that done was thru a DAN doc, which I did a few years back, but it was not a blood test, it was with the needles. 
.....
augmentin
in PANS / PANDAS (Lyme included)
Posted
T.mom
just curious, have you ever tried taking her off the amoxy at any time? if so, did symptoms return?