faith
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Happy New Year everyone!
I'm glad to hear from all who posted here, and very glad to see a few are doing well.
I can relate to all of you, we have good days and then there's the not so good. I truly don't understand it all and feel like if I just keep plugging, I'm gonna find out something important that may make the difference, you know? I wish I could fix it for all of us. some days I feel so bad for my son, and then there will be days where it doesn't seem an issue, like last night at a friends house for New Years Eve, as far as tics go, no one would have been the wiser, I don't know if he was or wasn't ticcing, (its mostly the vocal these days), but with all the kids and noise, it wasn't an issue at all. Actually he seems to do well enough when we're in a crowd, but its more his issue of not listening that gets him attention, he can be a little repetitive there...
Whatever path we're looking down now, keep posting, there's always plenty to talk about. Some days I want to just forget about it all, and some days I'm thirsty for information and like to pick things apart. All the cases here really interest me, I want so badly to see positive outcomes for our kids. I feel like there is this really thin veil between us and the answer to it all.... what I wouldn't give to come on here one day and yell "Eureka! I found it!"......
Thanks for checking in, I want reply to a few posts here, but I gotta go re-hydrate myself..........
Whaaat?????.........I meant a cup of TEA!!!!............sheesh......
Blessings for 2010,
luv,
Faith
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mrigsby,
see you are having the experience I wish I had (positive strep results regardless of symptoms) so that I could also go "ahHA!"....
If your child shows strep again despite being on 10 day course of antibiotics, obviously it was not eradicated, so longterm should be indicated at least. However, you say you saw no improvement in any behaviors or issues? (the laughing, etc?) maybe a different antibiotic or higher dosage? what are his symptoms again? any tics or obvious ocd? you are going to do the 5 day steroid? the effects of this may be temporarty, however, so just be prepared for that. keep us posted.
Faith
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I just wanted to add that it does devote a few paragraphs to PANDAS at the end and how the strep bacterial plays a role.
my point of this is that they are talking about microbes and different bacteria being the possible cause of mental illness, (it starts off with schizofrenia)....
one quote from this article: (titled "Infected with Insanity"..subtitle: The evidence is mounting: mental illness might be caused by microbes)
(the bolding is mine)
Some studies suggest that infections per se are not responsible for disrupting brain development; rather the body's immune response to infection affects the nervous system and does damage. " When the immune system becomes activated, it can influence the functioning of the brain and, in turn, emotional and behavioral responses", explains Christopher L. Coe, a psychologist at the University of Wisconsin-Madison who studies the effects of psychological and environmental factors on the immune system.
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I was kind of thinking the same thing. perhaps it is for a reason.
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Restless leg syndrome is more when you are lying down in dormant position and have the nerve racking 'urge' to move your legs. I've had it for years, and have been told it has relation to TS. it also waxes and wanes for me, and I've found some triggers, like it is bad when I've consumed ice cream or wine for some reason. sometimes I don't feel it at all.
does he do this while lying down or while walking or sitting?
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And, if your child does not mount a vigorous immune response- you may not "see" illness at all. Most symptoms of illness-what you see, is caused by the immune response.
peg, could you elaborate? are you saying that if the immune response is not adequate, that they could have some illness or even disease, but not show it?
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Well, Faith, you think he doesn't get sick. I know you read this forum a lot. So many PANDAS kids react odd to being ill, or I should say they don't react as a doctor assumes they should. Example, a lot don't get symptoms of strep. If not for PANDAS, many parents would have never entered a ped's office for a strep test. I've read posts about kids who went for allergy testing and the parents find out the child is highly allergic to things like pets. They own pets and the child never exhibiting the "normal" allergic response. When it comes to other ailments, it seems PANDAS kids react different than expected. When my son croup, he never even had a cough. I took him because his voice was high pitch for a week. Also, to my knowledge, prior to 5 years old, all I can recall my son having is maybe 2 ear infections and that single incidence with croup. So don't let lack of recurring illness or you not knowing about illness deter you from looking into PANDAS further. You've come this far, don't give up.
Also, for other's reading dut's post, a child can also get strep on their skin which may look like a rash or blisters and girl's can get vaginal strep. At least, I don't have the vaginal strep to worry about w/ a boy!
good points, and I guess I have no problem looking for these things, I've been looking for years, but regular doctors will just tell me there's nothing wrong with him. For instance, my son is kind of underweight for his age, yet our ped has no problems with this, he says, he's healthy and he'd rather see him skinny than overweight. With no obvious symptoms, we are all left running in circles chasing our tails. I guess I kind of feel like a jerk asking for tests when my son shows no symptoms of being sick. I've had alot of blood tests at my request, hoping to find something out of sorts, but he shows healthy.
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Yes, you can absolutely get Group A strep on the bottom.. perianal strep. It can hide out in the anal tract too. You can also get it on the skin elsewhere. When our ped last swabbed our kids she did their bottoms, noses and throats.......
dut,
did your child have 'symptoms' of that? is that why she did that? how did you manage to get that done? ......I could just see my docs face when I ask for that one....
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faith - my son is quite a bit younger(5) - presents with obnoxious behaviors - if you didn't know, you'd just think he was a hellion, not that anything was medically wrong with him except an extremely bad attitude and bad manners.
we went to a b'day party at someones house and he was pretty unruly, couldn't get him to listen to me, he was ramming a big wheel bike into other kids. wild
i could have written this myself! that exact behavior is something he does that is indicative of an exacerbation. otherwise, he is quite a nice boy, not aggressive. so strange, b/c with his exacerbation last spring after he got off first treatment with keflex, we were at a party and he was running over the little kids with a bike! i've seen that enough with him that i consider that one of our red flags of pandas behavior.
off on a wild note - there was a post recently about someone who gave her daughter tamiflu 5 months after she thought she'd had the flu and saw good results with pandas behaviors. my son had the flu about a month ago and had an exacerbation. he'd been doing pretty well but remaining potty talk that's part of pandas exacerbations with him. i had given him oscillococcium for the flu and gave it to him again based on that post. so bizarre - could have just been coincidental - he stopped the potty talk. how'd you treat his sickness? was it flu?
no, not the flu, just sore throat (negative to strep) and fever of 100-101. I didn't give anything but advil last night because he complained it hurt when he swallowed. no abx at this time.
and yes, what I described at the birthday party seemed a definite 'episode', I always thought so (this was more than three years ago). however, I cannot attest to anything similar happening after that time. (to remind, we never had another strep that I know of after that either....and I have had him tested several times, even just to satisfy my curiosity during times when he waxed on tics, or when I thought his throat looked red. it was never positve. so putting together an episode with a strep illness wasn't possible, and as I've said, when he has the virus, he is actually quiet on tics (whereas with that strep episode, he was not, the symptoms were while he was sick). so my theory is that with viral, the increase of symptoms comes a little later. maybe the same as what happens with the vaccines, some have seemed to get a vamping up of symptoms AFTER the vaccine is administered, sometimes months later.
Very interesting about the tamiflu and oscillo stuff, that is exactly what I'm wondering. if there is something there that needs to be kicked in the butt....my thought was trying olive leaf, since its supposed to be anti-viral. If you could expand on any of that, I'd be very interested.
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Faith, Have you done any immunological testing on your son recently... through Dr. T or Dr. L? I'd be curious as to what those tell you... It might be helpful in determining if he is able to fight anything off at this point.
As you know, I've been posting tirelessly on the fact that there could be a reservoir of strep anywhere in his body and if it was specifically the S. Pyogenes strain inclusive of the M protein strains, he may not have positive throat cultures, raised ASO or Anti-DNAse-B titers. Those particular strains do not produce the same immune response typical of most other strains. So, don't give up on it not being strep.
From everything you have said, it appears your son is very sick. Unfortunately, PANDAS treatment is ahead of the supportive science and may just take a leap of 'FAITH' on your part to make him well.
-Wendy
I really like what you are getting at here, this is good info and makes sense. but is this definite or a coud be? why don't doctors or anyone propose this such thing. If there could be strep elsewhere, why doesn't anyone propose to look for it? I know some have said they found it elsewhere, but was it group A, and if not, then it will be said that group B is not the culprit so it doesn't matter. I know WE think this is all a good possibility, but can't anyone out there prove this might be right? If strep could be elsewhere, why hasn't the PANDAS docs just done these tests on the kids they've seen that are not showing obvious strep, if they are a simple thing. Dr. L. didn't suggest that, nor Dr. T. If they are the docs treating this, they'd be the best ones to go find it, no? even if we were to find strep below, would it be group A? I'm thinking it would be group B, and supposedly that doesn't mount an antibody response, does it? again, don't know? owwwww....
I havn't done any immuno work. Since my son doesn't really get sick often at all, I mean he really doesn't except for these 24 hour virus about once a year, so my feeling is that he's a good fighter of illness, no? does it work like that?
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Okay. I'm going to throw a few things out here. All of these things are going to be jumbled together, so I apologize.You say you remember he had strep once. What age? Were the tics present before strep? If so, about how long?
I only have one documented strep case at age 7 (he is now 10 1/2. he came home from school on a Friday with this terrific eye rolling tic. we went to a b'day party at someones house and he was pretty unruly, couldn't get him to listen to me, he was ramming a big wheel bike into other kids. wild. he said he had a sore throat on the way home and the doc said it was strep (altho I might add with no swab as it was visibly obvious) we got amoxy and I did feel that after a couple days the tic and behavior ceased. this put me on the PANDAS path, but he subsequently had no high titers so that was that. Also, I was leary of continued abx, so upon my own research in inquiry, I felt I should leave well enough alone. After that, he still had tics here and there, with some waxing and waning, but definitely at a more mild level than in the past year. I can't say anything ever went away, there was always something, so it wasn't a dramatic episode, so to speak.
Also, yes, he did have tics before this, and had since he was 3 1/2. the other behaviors of sep anxiety and ocd tendencies were definitely there, altho I did not really zero in on them as symptoms at the time, I was always fixated on the tics.
.This is just a fyi, in case you are also looking for the devil's advocate in diagnosing TS instead of PANDAS. The psychiatrist told me that with clinical, classic OCD, even when the brain heats up a little, the OCD increases for the time being. So, if it was TS, it may be the same.A worsening after the illness that had a temp increasenot clear on this. but if you mean the ocd kicked up with the tic, do you mean just in general as in TS, or because of the viral illness?
How long after being ill, do you see an increase in anything that would be considered "PANDAS-like"?I can't say any of his issues are 'episodic', they just seem to wax and wane, always kind of there. This is the first time since looking at PANDAS now that he got sick, so before this, I only knew he was quiet on tics while the 24 hour bug was there, and eventually the tics returned. maybe before, I would think things were okay, and then after a time, I'd be like "oh he was doing so good, what happened?", so perhaps this was sometime after the illness, where the antibodies kind of all got in line and now slowly mounted their attack? don't know.
I have not, and I don't think any doctor I've dealt with would do this, I don't know how to go about this.As for the sore throat vs no +strep. Well, that can happen. People can have sore throats w/o it being strep. Now, my doctor (not my child's ped) once gave me a strep test and everything came back negative. He said he was convinced it was strep and gave me meds anyway. So, I don't know about the clean cut "if the test comes back negative, it's definitely not strep" theory.Have you cleared him of strep in other places?
is the cousin feeling? Did theyHow ever take him to the dr?I think I heard he was still kind of icky on Christmas day, and they did get him to the doctor who gave some other antibiotics (I think my mom said the abx they first gave him were some they had in the house). I have not asked my cousin if it was strep. I'm lying low because that night, my son swung on a basement banister and broke the spindle pole and my cousin went off on him......
..... I will ask tho, as I wonder too if it was strep.
.Okay. I think that's enough questions I'm usually the one asking them......[/b]I'm not convinced that tics and ocd plus are not symptoms of autoimune in some way, but I'd sure like to know the pathology. I do recall posing this question to Dr. L. and she did say, well, it could just be that they had strep the one time (in other words 'first') and then subsequently, other illness could cause problems. I get that, but still want to know why and what to do about it. I also asked what the antibioitcs will do, and she said "basically to keep strep away"......so that's why I'm wondering about us non-streppers. if its something else, can we treat it with something else? or is illness going to happen and there's no way to get around it? is there a microbe in there that needs to be eradicated just the same as strep? .....
Faith
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I understand what you say Mom, great that we are all trying to figure this out, and who better than us, but why its all so mysterious, just bites me.
As I mentioned microbes, here is something that caught my attention. I don't think they talk about just strep here, but microbes in general. you may not be able to get the full article without subscribing, but I was able to get my librarian to find it somewhere and get me a copy.
http://www.scientificamerican.com/article....d-with-insanity
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Please remind me if you have had him tested with the Cunningham study and what his score was?
cam score was 179
he also showed very high anti-lysogangliose, it was 1200. don't know what or if that means anything tho.
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Faith...now that he is in an upswing....(I know you don't want to do it)...but NOW would be the time to try a steroid burst. (Only do the 5 days) I think it will help give you your answer! If you still have anitbiotics left...give him a proph zith dose for a bit while you do it.....
Just me two cents!!
I think I'm going to gauge him in the next couple of days. I don't have a script for a five day burst, only the 30 day, and yea, too scared. and even so, I'm just not a fan of it if it is going to temporary. Being that we are not streppers here, I'm wondering about olive leaf. I gave him one capsule last night and think I'm going to experiment with a month of that. if its supposed to be anti-viral, it makes some sense if what I'm dealing with is viral. but I still don't really understand what it does. will it eradicate viral microbes just as abx wipes out the strep antibodies? don't know if that makes sense. but things are not scary crazy yet, so I think I'm going to sit tight, have a bottle of champagne all to myself tomorrow nite and go from there..........whaat?.....
I guess I'm trying to figure out where us non-streppers fit in and how to get to the bottom of what ails US. does that make sense?
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Faith,
Very interesting post, our boys are similar.
HOWEVER, has your son ever had high ASO titers and such? Mine has, a couple times.
Just wondering. I'll think more about other issues as i have time. Mr Hyperactive is hounding me right now.
Total flipout this morning, been a lot of those this past week, think it's the anti psychotic drug making him more psychotic.
no high titers of ASO or Anti Dnase ever, and we've had it done about 4 times over the years. if I had one or the other, I'd be more convinced, at least for the abx usage anyway.
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Yes, I was posting a lot back in 2007 as well.
What's weird about my son is it seems like illness brings out a burst in tics but the tics don't go away with the illness. It's like they linger and change and linger and change. And then they just go away completely until the next episode.
same here, but I don't think my son's tics or issues ever totally resolve, they are always there on some level.
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yo, just to boost my case, I found this post from 2007, it seems I'm reporting the same. I was looking for posts where some of us talked about our kids tics and symptoms in relation to illness. whatever I find that relates, I'll post here.
http://www.latitudes.org/forums/index.php?...amp;hl=sickness
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Just for fun, I figured I'd throw out our latest experience with illness, and maybe it could give some of us who don't have the 'typical' signs of the 'bad boy' called 'strep' some insight to how or why or 'if' we are in the zone of PANDAS as well. Could we examine this case? as I feel it may mimick alot of the kids on here who are not the obvious strep connected PANDAS cases.
some of you know I have mostly treated my son as tourettes, as tics are his main presentation, but he has the other issues of ocd, sep anxiety, irritabilities due to sensory, emotional upsets, etc....and I've recently tried to see if, how, or where my son fits into the PANDAS (autoimune) category. perhaps it is all autoimune in some way, but somehow we just don't fit the bill as far as getting strep, it is never detected but once that I know of a few years back, and antibiotics that we've tried recently (month of augmentin 1000 mg. per day and azith 250 mgs. per day for about three weeks have had no real impact, and I feel the azith actually gave us a rise in vocals.
Well, while my son's issues are all still present, I felt like the tics were at an even level last couple weeks, definitely there, not bad, not great, but let's just say the evil I know.
Christmas Eve, his cousin was upstairs sick in bed with recent sore throat and fever (he was on antibiotics that they just had in the house, but apparently the doc did not prescribe them). I asked my son to not go near him, but they did cross paths and were in the same house after all.
Monday, (the 28th) when I picked my son up at his friend's house, he said he had a sore throat. we got home and he was hot and did have a low fever of about 100, but didn't go higher than 101. he was droopy and weak and went right to lie down and did fall asleep way earlier than usual. he also said he felt somewhat nauseas and kept threatening to throw up but he didn't, and also refused food. Okay, so to me, this is his typical once or twice a year viral thingy. Also, as is typical for him, as I've noted this in the past, is that his tics absolutely wane considerably during the actual illness. his vocals were almost non-existant and nothing else I could see. really I can only gauge tics, because his other stuff is only apparent in situations, and since he was in bed, the tics are all I could really look at.
Now this time, I was going to pay as much attention as I could to how this sick time and his tics (and other issues) played out. in the past, I was not really looking at PANDAS or autoimune or antibodies, or anything like that, so I didn't really gauge how long after he would start to tic again. I recall I would be glad he didn't get worse while he was sick, thinking that the illness 'didn't' trigger more tics. BUT, I did not look at what happened later, like in the days or weeks or even months later.
So, just to backtrack, Tuesday I took him to our new pediatrician, we had a standing appt. anyway to get a repeat blood test for something else, so I had him look at him. He did the swab for strep.......negative.....no surprise, it always is. He did not prescribe antibiotics, altho my old one usually did until we got the culture back. but anyway, this new doc is not aware that I have tried antibiotics in the past, but he knows I am interested in PANDAS. I asked him if my son could have strep, but just not show it? he said, no, you either have it or you don't. okay....
so home we go. (btw, my son is NOT on abx right now, I took him off more than a week ago because I did not like the azith, felt he was increasing vocals, and when I took him off, he calmed down considerably the next day....that's another story).So yesterday, his fever subsided, altho he still felt some hurting when he swallowed. By evening he was feeling better altho still somewhat tired and droopy, we spent some time returning items after the doctor, so that wiped him out (and me!).....oh yea, and the doctor told me he made a mental note that the vocal was quiet. I told him this was usual for him when he's ill, but then they return. I asked what he thought and his reply was 'because his nerve endings are not being stimulated".......i really didn't get that, but just said, 'oh'.....we could figure out that later.
So then by evening, while we were watching tv, I could see my son's neck tics start kicking up, and he was NOT doing neck or head tics in the recent past. he's had them yes, they were troublesome a few months back, but had calmed somewhat and it was mainly the vocal we were dealing with, other tics were minor and infrequent. He was now turning his head alot. This morning his vocals were back and in full force. I gave him an advil last night (mostly for the pain of the sore throat) and one this morning hoping it might calm the vocal. maybe coincidence, but it seems it did. He is feeling okay now and has a friend over. (oh and yesterday, he came to me about 6 times acting nervous and kept telling me he didn't want to go to the dentist and that he was nervous about it, he knows he has an upcoming appoinment in a week or so.) but it was wierd, because he's almost 11 and he's been to the dentist umpteen times and knows its no big deal.......
Okay, so here are my questions about this type of case:
Why does he have a definite sore throat, but its not strep?
Why does my son NEVER show strep or strep results?
Being that he is a tics/ocd case, if he has a PANDAS or autoimune connection here, is it just the simple answer that all viral and any illness is going to kick up symptoms? I think I get that, but WHY? and why is the finger only pointed at strep by most of the doctors who are supposedly in the know about PANDAS? I guess they have to draw the line somewhere?
But for myself, I want to know that I'm on the right path, and that these things make sense to me. Now that I'm really paying attention, I want to try and understand what exactly could be going on. Since this is my son's first time getting sick since I started looking at PANDAS again, I want to make and record the observations, for before this, I have just a sketchy memory. I know for a fact we've talked on the tics board about our kids and how they react to illness (not necessarily strep), but we never really knew what it meant of if it meant anything at all.
If my son starts kicking up his tics from here on, I feel like his being sick set him back, as I guess it does every year. obviously kids are going to get sick here and there, and so he's never going to get ahead of the game by side stepping illness. I actually feel like it is healthy in some way to get sick, its the body's way of fighting off infection or microbes. but do our kids who have these symptoms and neuro issues suffer consequences from illness? my son is not one who gets sick often, this is what he gets, maybe once or twice a year. so is his immune system strong? is that good? are the kids here who get sick often, worse off in the symptom department? don't know.
Will antibiotics do something or nothing for us if we are not strep infected? I don't think I need to worry about 'getting' strep, cause it seems he never does. what if it was strep once, and subsequently, the viral contributes to setbacks, and if so, why? what is happening? just more antibodies of some kind? are there microbes of another sort that can do this type thing, attack the basal ganglia? Lately, I've been looking at 'microbes' in general, perhaps they are evil too? how to treat those guys?
I hope I didn't write too much and confuse anyone, but I think this is the type of conversation many of us are having in our own minds alot, especially those of us who do not show typical strep and are constantly being told we do not fit the PANDAS criteria by the "PANDAS by the book" docs. If wer'e not, I'm okay with that, but I just want to understand it all. I dont' want to go blindly, if I see some evidence in my child, than it will help me move forward.
thanks
Faith
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I'm pretty sure we've never had any sinus infections here.
Faith
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LMama,
could I ask how long after he started with this latest mild cold did you feel you saw symptoms? and prior to this you've seen symptoms go away after abx, and stay away for a while? thats good. I'm still trying to figure out my son's problem. usually we have viral illness and strep is nowhere to be found. so I wonder too what is going on. even today we were swabbed yet again because we had to go in for a repeat blood test anyway, but last night my son came home from a friend's house and had a slight fever and sore throat......yet its negative to strep. always is. but for us, I always note that during his viral, his tics quiet, but now today that his feeling better, they are starting again. ..... so you have started this abx with negative strep also? and it seems to be helping? could you verify that the trend continues? thanks.
Faith
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I think its perfectly reasonable to do the research and what you can to see if this is your child's issue. but I also think other reasons or treatments should not be ignored. whatever it is called, I don't care, cause I don't owe anyone an explanation, you still want to find out if there are triggers or thihgs you can do to alleviate or manage your childs issues, tics or otherwise. even those that feel they are properly diagnosed PANDAS do not have a clear path ahead, they travel a rocky road as well. I guess the lucky ones are those that catch it early and antibiotics seem to clear up the problem. persue what you must, but if there is another way to lessen your child's symptoms, I say look at that too. As far as PANDAS goes, I am only going as far as I'm confortable with.
Faith
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Wendy,
how did you find out about the 4th child? you havn't seen them since that playdate? the dad recalls that his child got sick with strep at that time? just to make sure, your not suggesting that just because the children (or any child) have strep, that they develop PANDAS or the behaviors tht seem to go with it? or do you feel that they all really had Kawasaki's? ..... also, how come all the kids I know that have strep, don't have problems like my son?... (who always tests negative) ...he had a sore throat and fever last night and we have yet another negative strep test today......I just don't get it.
Faith
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Michael,
I don't know from experience, but I've heard that with the yeast treatments, initially the symptoms can get worse for a bit before they get better. I think that's pretty much the consenses. I think you might find more info on the tics board, maybe look at some really old posts about 'candida' and 'nystatin', etc.
Faith
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Thanks for posting that. I really needed to hear that today. I am always worried about what other people think. Instead I need to only worry about my ds. He tells me all the time Mom don't worry about my tics am ok!! I need to learn from my 10 year old.
It makes me smile to see your son says that. mine...not so much..
I know he hates his tics and he hates when we have to mention them. he's 10 as well, and I can see that he is starting to understand it all, but he feels like 'why is this all happening to him', and he says that. It broke my heart the other night when he said, 'I feel so embarrassed when I have to make my noise in front of everyone'...Really its not as bad as 'he' percieves, I know that it is not a social issue for him, and his friends and the class just kind of go with it, and I think he can control some of it. but I know he feels it inside and knows that he is the only one doing it. This is what makes me wonder if I might hve to try a med at least for the vocal part, altho, not sure if there is one.........
sorry to be a downer, I know this was meant to be an uplifting thread, but, that's my story.
Faith
I'm usually the one asking them......[/b]
so home we go. (btw, my son is NOT on abx right now, I took him off more than a week ago because I did not like the azith, felt he was increasing vocals, and when I took him off, he calmed down considerably the next day....that's another story).
Immune workups and antibiotics
in PANS / PANDAS (Lyme included)
Posted
P.mom,
I think you might be on to something about the antibiotics. you've probably read alot of stuff like this, but here's some interesting stuff in this link. I'm too tired at the moment to poke at it, but some might be interested in some of this. in the sixth paragraph, it mentions antiboitics depressing the immune system? don't know if any of this is viable info, but i thought it was interesting.
http://www.mnwelldir.org/docs/immune/immune1.htm