stacestar

If I could get opinions on a situation that I think really sounds like PANDAS but would like feedback about. My niece, has got strep 3-4x in two years. This last time (about 4-5 weeks ago) she got extreme anxiety right at the end of the infection. After 10 days abx her stomach hurt, so a clinic Dr said she needs more abx and prescribed more. After 5 days sister took niece to the pediatrician Bc her stomach still hurting. All the while, bad anxiety episodes. Pediatrician said-don't need the 2nd abx, stop them. Said anxiety and stomach pain will go away on own. 😡😡😡 Meanwhile, my little niece (9) is having abnormal anxiety OCD style. Crying often, afraid of being sick, asking her mom if she's going to go to the hospital, get diabetes, etc (irrational fears), hitting her head repeatedly with her hand, flailing her arms while crying, panicking, etc. Although she sometimes could be a little worrier before this, really this was sudden and through the roof with the strep. Also her sister has had on and off stomach pains for 3 weeks. I think they both probably still have strep! Their pediatrician isn't PANDAS knowledgeable. 🙁 Doesn't this sound PANDAS? Any advice I can pass on? My son's issue has been Lyme and after three years treatment he is basically over it, and bc he never dealt with strep I don't know all the details to help her with. Many ideas are interchangeable with Lyme PANS and strep PANDAS I know, but... I want to help her so badly. I hate these issues.

Thank you guys for your replies. My sister said niece's anxiety was very bad tonight. 🙁 I told her it would be good to ask for these tests and ask for more antibiotics. I wish her pediatrician knew more about this all. Every pediatrician should! With as many children that go through this that there are... every pediatrician needs to be educated! My sister needs to find a PANDAS/PANS Dr. but right now I don't know if she's ready to do that (distance). She'll do anything, but is trying avenues here closer first.

Hello! I haven't been around for quite awhile, but have a question regarding strep. My son's issues have been Lyme and co infections, so I'm not as informed on strep. My niece had strep throat last month and since then is having extreme anxiety, OCD type. To me it seems classic PANDAS. My sister is open to the idea that this could be the case. Since she just had strep last month though, the titer tests will all be high still right? Not showing if this is what's bothering her? We don't have a PANDAS Dr in town, so my sister was hoping pediatrician could run some tests. But is it too soon to test with ASO Titer test? How can they determine if strep is triggering the anxiety? Also, niece keeps saying her sides hurt and her sister is having bad stomach pains on and off for weeks. Both have been on 10 days abx for strep,yet still all this is happening. Advice if anyone has any, please, thank you!

thank you guys for your replies and ideas! kmacdonald34, that is wonderful your daughter is symptom free! My son is getting there, and normally I'm pretty positive about the situation, but this accident thing is getting to me, for his sake. I do believe it will eventually stop, just have to figure it out. We have an llmd appt. soon and I'll be mentioning it to her too for ideas. llm, I've wondered too about if there's particular herb that is messing with the bladder somehow. Then I think about how, well, this was a symptom before any treatment, and so tend to think it's more the herbs messing with the lyme/bart. On antibiotics it didn't happen, at least not like lately, but I'm not wanting to do the antibiotics for lyme or bart again (although they helped and I'm glad he was on them for that time). I've thought, maybe if I scale them down even more? or another idea is to switch protocols? Like to do Buhner instead of Beyond Balance. Beyond Balance uses a combination of herbs in the same drops, and it uses about 4-5 herbs for lyme and then for bart. too. I've thought maybe if he was on less herbs and given one at a time, maybe that would help? but I'm not sure. I may try that eventually. and emst, I've wondered about parasites too. I keep reading that most people with lyme often have issues with parasites; I almost don't even know why I suspect parasites with this, but I kind of do. We're having him tested soon, although I've heard the testing is not very good. Even if negative, I think I want to do at least an herbal parasite tx at some point. thank you for the info on the Boiron homeopathy too, I will look into that. The only homeopathy I've ever given him was this past spring, when his ear was hurting (while he had the flu) and I gave a homeopathic ear drop. It worked! very well in fact, stopping the pain. Makes me want to try the bladder one, knowing he had success with another homeopathic remedy. thank you. jan251 thank you for the magnesium advice and D-mannose. I've never heard of the latter one, will look it up. Now that you mention magnesium I remember I read something about that helping this issue somewhere else. That one seems easy enough to try too. I have some mag powder here already. It's the Natural Calm. The health food store lady said it's safe for a child his age, so I think I'll give that a try starting tomorrow. And, I agree, the urinary issues are mysterious. I believe it's probably not just one thing, but maybe mostly one thing that tips the scales, and if I can help in that main way, or in several other ways, than hopefully this can stop sooner than later. Thank you also you guys for just sharing at all, b/c to know that my little guy isn't the only this happens to is reassuring. I don't want anyone to go through it of course, but in the way that knowing you're not alone helps, that's what I mean.

my son had sudden urinary accidents back in the fall of 2013 before dx and treatment started for lyme (and bart.). They went away with his antibiotic treatment. Then, at about 90%+ symptom free we switched to herbs (2 drops 2x/day) this past fall and the accidents started again. Winter and spring I backed way down on the herbs (other herxing reasons). We upped the herbs (still not high dose) to 1-2 drops 2x/day since April, and now, especially the past month, the accidents are back. He will just suddenly pee. He cannot feel it coming. He'll be standing, or in mid-step and...woosh, pee just comes out. He's 5, and potty trained for over 2 years. I definitely see them happening in relationship to the herbs. Today he had 3 of these accidents. Usually it's more like 4 a week, with only 1 on any given day, since the increase in the herbs. When searching for ideas, I read someone say regarding a similar situation, that perhaps it was miscommunication, basal ganglia, etc. or something. From what I read lyme and bart. can affect the bladder and cause miscommunication with bladder signals. I'll bring it up to his llmd, but am wondering if anyone has had similar experiences? Or ideas of how to help if you have had this symptom. Maybe I'm still not doing enough to detox. I've been meaning to order either Pinella, Parsley, Burber or glutathione, but haven't yet. (oh, I did read about if maybe a UTI, but he had the accidents prior to treatment, and in the fall with herbs and now with the herbs again. I would think not a UTI, especially when lyme and bart are known to cause bladder issues anyway. Also, there's not an urgency to go. In fact, just the opposite. He doesn't feel the need to when it happens. Most of the time he goes normally without problems still, but even a little of this is too much.) and one more note, he's on abx right now, b/c he had a rash that was suspicious of being an EM rash, so llmd put him on amoxicillin last weekend.)

a long one! how does strep in the gut work? My son (w/lyme and bart.) has been having stomach aches, about every day, since mid April. Now, of course lyme and bart. can cause stomach pain (esp. bart, I know), and stomach aches were one of his main symptoms (well, he had so many) when first diagnosed last year, but they had really decreased with treatment, so, so much in the past year. To the point where he might mention a stomach ache maybe 2-4 days a month is all (for several months). Now, it's every day. He doesn't even want to eat or play sometimes (that's not often, but happening.) One reasonable explanation could be we've been increasing, very slowly, his bartonella herbs since end of April. So, that's probably it, maybe? probably? But, I chart his symptoms religiously and I noticed the stomach aches, almost daily ones, started 4-5 days after we got an email from the school nurse giving pre K parents a head's up that strep was going through the class, with non-typical symptoms. Not sore throats, but stomach aches, and low fevers. And these particular stomach aches of his were right BEFORE a bart. herbs start/increase, starting with 4-5 days in a row, and hardly letting up since. Hmm… Again we started the bartonella herbs within one week of those first daily stomach aches of his in April. I've been thinking all along it's bart., herxing; bart. causing stomach pains,…and it probably is bart, but the timing bothers me. I'm going to ask the llmd to test him for strep. my question (finally, if you've made it this far): Can strep induced stomach aches last 7+ weeks? maybe a combination of bacteria? maybe I'm grasping at straws, and it's obviously bart. who knows. I was going to stop the bart. herbs to see if the stomach aches subsided, but with a possible new tick bite last week, he's on abx now for a time, and I don't want to stop the bart. herbs just in case. Thanks if you have any advice or thoughts. I know no one can say for sure, but I was wondering how long strep can cause stomach pain, and how long are the treatments when that is a culprit? oh, and my son's strep tests all came back very low and normal last year when he was being dx with lyme, and llmd wanted to look at the big picture. So he hasn't had issues with it before.

thanks kmacdonald34 for your reply. I think that makes sense too. The good news is he hasn't ticced with blinking this time (or with anything else) and I'm going to think positive that he won't start. The heavy, blinky "feeling" obviously isn't normal (even if not ticcing) and must be being caused by something of course. perhaps it is pollen? perhaps infection; I don't know. so much involved in the body.

I keep adding (trying to answer ) my own post. But just to add that he isn't actually ticcing now, just he says they "feel" heavy and like blinking, and I saw him squinting not blink ticcing. Anyway, just thought I'd add that.

a few moms on another site that I asked about this too, said maybe the eyes might be related to histamines from seasonal allergies. That's something for me to look into. The two other times ticcing started for him was Oct. 2013, and then one year later Oct. 2014. I do really think other things were involved (lyme, yeast most likely), but perhaps for him seasonal allergies are playing a part too, and tipping the scale? hmm.

looking for opinions, thanks! my son (5 years old) hasn't had any lyme symptoms for 6 weeks! (Thank God!) Prior to these 6 weeks, he'd been doing really well too, with just minor joint pain about 4-5 days/month is all (for several months). (he was dx and started tx for lyme last winter, Feb. 2014) So, as the weeks go on with no symptoms, I've been holding my breath, and hoping/praying for the best. This morning though he told me that his eyes are bothering him, wanting to blink heavy. He's had blinking and other tics off an on in the past (last time was Oct.-Dec. this last year, but nothing since then. And, also this morning he told me his tummy hurt. Strep was going around his class last week. The health aide at school emailed all the preK parents saying, strep was in the class and not with typical symptoms, but with tummy aches and mild sore throats. In 2014, he had labs done and his strep titers were very low, very normal. So, strep wasn't contributing to symptoms last year, when he was very symptomatic, but maybe now after last week at school? here's my question: since he hasn't had any lyme symptoms for 6 weeks (and they were joint pain) and since strep was in his class (exposure to symptoms time is 2-5 days, which fits) do you think the eyes bothering him/blinking, and the tummy ache are strep? or lyme? I guess time will tell. oh, also: I think his ticcing in the past was also yeast related, and I've been slacking off on our anti-yeast diet and lots of coconut, etc. Who knows really. But if you have any thoughts, I'm interested in hearing them! Thanks so much!

thanks for the reply Jan251. maybe that does have something to do with it. hmm. and hi rowingmom! thank you for your reply too. I do think the screaming comes with a "have to", premonitory feeling, since he tells me ahead of time. I've read about dystonic tics having that feeling, so maybe it's that kind of a thing. But again, it's so random and rare (thank God) that that is why I question if it is a tic. hmm, confusing, and maybe it doesn't matter that much as long I keep on track with the treatment and detoxing, nutrition, etc. Partly it's curiosity on my part, wanting to understand it, but wondering too if in understanding it better it could be treated better (more exact?) he woke up this morning with ankle pain, and a tummy ache. The tummy aches lately are only a couple a month (if that) but the joint pain is still at about 1-2 days every two to three weeks, (often with the full moon or the new moon it seems) so the fact that he had scream urges last night, and ankle pain this morning, and tummy ache. I think they're all going together as a lyme symptom (or Bartonella?) flare. I may need to increase his herbs; I've been giving him very low doses for the past month. rowingmom, remember the ticcing that I mentioned he was having last fall and winter? well, it lasted from mid-Oct. to early Jan., almost every day. Waxing and waning, almost gone some days, then full blown others. Finally in early January it stopped and he's tic free now. anyway, that's one reason I slowed way down on the herbs. his joint pain and other symptoms never increased through all that though. the llmd wants to test him for bartonella, babesia and bio-films. I asked if we could just start the bartonella Beyond Balance herbs without the test (to save the money) and she said that was ok, so we're doing that as soon as they arrive in the mail any day. as far as Babesia…we may test sooner than later, but I want to start the bartonella herbs first. Maybe I'm dragging this out for him, I don't know. The llmd is kind, but she said something like "we don't want this to take 5 years for him" at our last appt.. (well, of course I don't either if it doesn't have to, but it can take time and I don't want to rush and cause bad herxing.) She wants to pinpoint the infections and treat. I agree with that and treating the infections there, but to spend $600. on tests that aren't accurate, well, I can't afford that right now. I could sense she was a little in disagreement about going so slowly with the herbs (I don't even give him a full drop a day yet), and she may be right, maybe I should up them faster, but I got burned last fall when I did up them and he started the ticcing that lasted three months. That was a hard time and it's made me overly cautious. overall he is feeling good. He'll go 10-20 days in a row lately with no symptoms and his energy is great. But, it's still not done. I want it done, of course we all do. Adding the bart herbs makes me nervous... you know, upsetting the apple cart. But it needs to happen, and we'll do it. got long here. Thanks rowing mom for wondering how he's been doing and for your advice and thoughts as always, and thanks jan521 and anyone else!

my son (5 and close to symptom free with lyme) had two screaming urges tonight. This happened last month a few times. It doesn't happen a lot, but it seems like recently a few times a month. It's just one or two screams max on the few days a month it happens. He's on herbs, going slowly. Here's my question: do you think this a lyme symptom, cycling, (b/c it might be cycling). He's so much better now anyway, symptoms few and far between lately. or is it a tic? it doesn't seem like a tic necessarily, b/c when he's ticced with other things (blinking, sniffing, lip movements) it was pretty consistent and often. With the scream thing, he'll go a few weeks (or more even) and not mention it or do it, and it's not repetitive. Tonight he said, "mommy, I just have to scream. My body has to." Then he screamed. Then a few minutes later he looked at me again and said, "mommy, I'm not mad at you or anything, but I'm going to scream, but I'm not mad at you. I just have to, my body has to." Then he screamed loudly again. I just gave him a big hug. It made me so sad. Then nothing the rest of the evening (thank God). I looked at my symptom chart for him and the last time I noted this was Feb. 8th, about a month ago (unless there have been a couple I missed). I have seen "urge to scream" on a lyme symptom list. I wonder, is it lyme (or confection), or PANS caused by lyme? Is it fighting the infection that helps, or detoxing, or yeast, or all of the above? thanks for any ideas.

just want to chime in and offer encouragement too. Stay connected with forums like this for support and information. I've learned (am learning) so much her myself. My son is dealing with lyme, and so his stuff has been a lyme triggered PANS situation. I remember when my son first had a sudden onset blinking motor tic last year. I can relate to sriramcs post about feeling so upset and loosing sleep. I remember last year when the tic started I just wanted to back time up. It was so sudden, like the name says "sudden onset". There were no other signs or warnings (well, that I recognized then). It started on a Wed. and I remember thinking for days, I just wanted to go back to that Tuesday. And wondering what had happened, what in the world was going on. Then you dig and dig and research and find a good dr. and support and learn, and realize that it can get better. My little guy is just about 99% symptom free and doing really well overall, feeling good. He stopped ticcing last year after 6 weeks; he did unfortunately start again this past fall and it still hasn't resolved 100%, but it is usually minor and I believe full heartedly that it will go away as we work through the triggers (we're detoxing, combating yeast, and infections). This isn't easy to see the ones you love the most go through these things, but hang in there! There are answers and there is another side to this; I believe it!

thanks worrieddadandmom and valsmom for the replies. I've yet to try the curcumin I did buy (Terry Naturals), b/c to tell the truth, I worry now about everything I give him, that it might cause a flare I mean, but I know that I have to try new things, like the curcumin, so I think I will tomorrow. The ticcing still hasn't 100% resolved. It's gotten a lot, lot less since a Christmas (that week was bad). It's very frustrating and disheartening to not see it gone yet. But keep trying we will until it's gone. thanks valsmom for that idea. Does that mean the anti-inflammatories won't get rid of all ticcing though? I guess really of course the goal is to get what is causing the inflammation (the root), and then the inflammation won't happen.

thanks guys. I've heard good things about enhansa. I may order some, or the meriva curcumin which I've heard good things about too. Neither are available in stores here so I got a Terry Naturals product called Curamed, with Curcumin BCM 95. Maybe that will help until I can get an order from online. I do have to add a big thank goodness, that the tics have settled down again today (starting yesterday, but especially today). from the 23rd-27th they were off the charts for him. It was hard to see. My theory is: yeast and lyme die-off again. He's been doing herbs for lyme and we go SLOWLY or he herxes badly. Anyway, he had a dumb ear infection a couple of weeks ago and was on amoxicillin for ten days. During those ten days there were holiday parties with sugar and bad foods too. I think the amoxicillin increased yeast (and got some lyme probably too). The last three days we've focused on detox and no more bad food (cookies, cakes, candies that he had at Christmas time; back to our anti-yeast diet). I've given him spoonful after spoonful of coconut oil, chlorella, clay baths, and lots of water. I think this is what's helped, b/c the tics have really decreased today (a bit yesterday too). I'm going to try the curcumin today too. thanks again!

I've been here in recent weeks with questions about motor tics. and now here's a new one. what does it mean that when my son (with lyme) was sick with a cold (or flu?) and was feverish for two days, that when I gave him ibuprofen for about a 36 hour period I saw basically no tics. maybe two at most. he's been ticcing for about two months. At times it's been virtually gone, and then it will flare for a day or two (usually when I add back an herb, or his monolaurin or something), but it never really has been 100% since Oct., only almost gone. Many days almost gone, but not gone. but…I noticed that while sick those 2 days- no ticcing (again maybe 1-2 tics). Then I remembered how I've read people saying they give their children ibuprofen or some other anti-inflammatory (like curcumin, which I just finally bought today). anyone know why reducing inflammation reduces tics? I've read how bacterial endo-toxins and yeast (in effect cause ticcing) do cause inflammation, so it makes sense what the inflammation is most likely coming from, but that's very interesting that reducing the inflammation made a huge difference. so much to learn. thanks for any info!

thanks katgrein and rowingmom for the replies! it's all so complex isn't it. I mean, I'm learning more and more it can often be a combination, but maybe with one thing that is more problematic at one certain time, if that makes sense. I remember something you said once rowingmom, something about that the reason you think your dd is doing so well may be b/c of everything you're giving her, really covering all bases, every angle, and that the darn stuff therefore has no where to hide too. I'm learning that first hand. At the beginning of this lyme stuff, last winter and even into spring, I was wishful thinking and naive, that my son would be the one with no co-infections, and who didn't have "layers" to an onion to peel off. Well, not so, apparently. Again, he's doing well overall, so I won't get discouraged, I'll just keep on trying and moving forward. We have our llmd appt. right after the holidays and I'll talk in depth with her then, (or email her sooner if need be) about yeast (maybe use an anti-fungal?), mold, emf and bartonella ideas. These are things I've been thinking about too. Bart. is something that she's wondered if my son has, but we haven't addressed as much. He did have some foot pain two days last week and some leg pain (don't know if it was shin or bone exactly), and I know these can be on the bart. list, so we'll probably eventually try some bartonella herbs. Targeting yeast, mold even harder, and emf for the first time, is what I"ll do in the meantime. thanks!

my ds (dx with lyme) is, I'd say about 95%+ symptom free, has been for months. If he complains of anything at all, for the past 4 months, it's just minor joint or foot pain (maybe 4-6x/mo.) We're doing herbs. My last post was about ticcing that started when we increased the herb dose. I do believe the ticcing in him was/is the result of toxins, too many at one time. We've been doing several things to detox; maybe could still do more. The tics started with an increase in the herbs, but now... …fast forward from Oct. 26th to now. Oct. 26th was the last day I gave him his herbs (we're using Beyond Balance) until yesterday. I gave him a 1/4 drop yesterday to start them back up, (and today he had a sniff tic back, although he does have a cold. (*Update is that today, Thursday, no sniff tic really). ***so from Oct. 26th to Dec. 8th, he didn't get his lyme herbs, but in all those weeks he never 100% stopped ticcing. There were several times, many days in those weeks, where the ticcing was almost gone, virtually just trace (99% gone), but not 100%; become more with an increase in probiotics or an addition one day of monolaurin, and sometimes with nothing new given. at first I thought it was just lyme die-off, but with no lyme provoking/killing herbs for 6 weeks would he really still be herxing from lyme die off? I wonder/suspect yeast contributing too. maybe also the mold under sink was more than we thought, and the vinegar didn't get it all. any thoughts or ideas, I appreciate! Thanks!

I'm so glad your son is doing so well! I just wanted to say I like one of your last lines you wrote, (well, of course the whole post was good, as it's filled with good news!), but to me this especially means something: "we see the light here at the end of the tunnel, and if it stalls out…we will do something else." I'm grateful that my son is doing really well too, but there is still that last bit to deal with. I sometimes get frustrated, thinking…why isn't this done yet? Or I sometimes get anxious or scared, but then lately I've been finding peace in thinking the same idea you wrote so well there…that there's a light at the end of the tunnel, I can see it, and we will get there, one way of another…we will. (and I have to throw in a thanks to rowing mom too! I think she's found her calling.)

rowingmom, what cilantro product would you recommend? I went to our local health/supplement store today and they didn't have any cilantro products, so it looks like I'll be ordering it from online. Thanks!

very interesting. I used to watch online youtube videos by Matthew Monarch and his wife, who are Raw Foodists living in Ecuador. He's pretty extreme with raw food, and he admits it, but one of the biggest thing he promotes, educates on, tries to get people to do is enemas. He is always saying how they are key to getting healthy. So now, add to that the probiotics! I know the point of Dr. Perlmutter is to get the probiotics in, but at the same time the cleansing is happening too, so a double whammy. Wow. It's a treatment I would love to try for my ds, but I hesitate, b/c of discomfort, and he might be weirded out. But, then again, he is young and parents have given children enemas for lesser problems before. very interesting.

hi rowingmom, thanks for answering to my post. You're so great about helping and I appreciate it! I'm going to take your advice about the ACV in the hair to see if it helps with the cradle cap. The llmd had told me I could get a prescription shampoo from the pediatrician for it, but I never did. I didn't really understand at the time (last summer, I confess) that I probably SHOULD do this. I just kind of thought of it like, well, it's not bothering him, so what's it hurting. But, the more I learn, the more I do for him. I can see now that I don't want him to have a fungal growth on his head. I don't know why that didn't sink into my head sooner. So yeah, he'll be getting some ACV in the tub. He'll love it (not at all). Really though he's good at tolerating the things I throw at him like this. The one tic (lip squeeze thing, which I read online would be a dystonic tic, I belief) was much, much less today, thank goodness. But the blinking tic was a little more than in the past week or so, yet not constant. still detoxing. haven't added any herbs back yet. Don't know if that's best, but I fear he isn't detoxed enough het. I'm sending the llmd an email on Monday as an update. I've read in old posts from others here and there that some herxing has lasted a couple of weeks or more sometimes. I think his yeast needs to be addressed, so the anti-yeast diet is still on. I do think it's connected to die-off. There's so much involved (so true that one formula for lyme probably won't cut it). Sometimes it seems overwhelming, but I try to say peaceful about it. herxing, yeast, metals, mold, etc. It can make my head spin to try to figure it all out, but one step at a time. maybe I should try the cilantro and DE? I'm going to look into that. Thanks for your ideas!

thank you eamom for the comment about the joint pain and strep. The more personal stories I hear about that the more I can probably convince her to have her tested for strep. also thank you for the urinary link. I'll read through here in a minute. maryaw- good idea to have her possibly call Swedo's office. I hear what you're saying about being pushy, b/c like I said in one comment, I love that little girl like she were my own, and I won't sit by and let her be sick if I think I have info on it. With my sister it's a fine line of being heard and being shut up that I walk with this issue, so I have to navigate carefully though for sure. The good news is is that really I think she is pretty open to having her tested for strep. I think she just may do this with a little more info. (examples of how the symptoms match, etc.). To be honest, it's more lyme that I can't be pushy about right now. That's the thing that when mentioned she gets upset and will cut me off angrily. I wish it wasn't so (b/c since we live in an endemic area, and my son tested positive for it and they are everywhere together in the summer-every yard, park, tree climbed, garden, etc.-, and her symptoms match it: well,my money's on lyme , although I know I could be wrong), but anyway she gets downright mad when I suggest it; hung up on me once even. seriously, what's unfortunate, is that if lyme were understood like it should be by all dr.s, (if all dr.s were lyme literate) she would have her tested I'm sure. A big part of it, I hate to say, is the going to a dr. 90 miles away who doesn't accept insurance. Not that she's put money and time before her daughter, but she doesn't think it is lyme, so to her to drive 90 miles and pay $325. for the appt. and then $200. for a test is not justified, whereas if it were covered by insurance and the pediatrician 10 minutes away could do it, it would probably be done, as a "just in case" or "well, okay, why not. I don't think this is it, but what's the harm in testing?" But, for now if she even got started on testing for strep (which maybe that's it!) and starts to go down these roads, then probably the more she'll be reading herself and learning from others besides me, and the more open she could be to it being anything-whatever it is. oh, new question: so I went to a llmd for my son early on (kind of). He had his strep titers test and they were very, very low/normal range, so the llmd ruled that out in him. So, I don't know how the whole strep thing with dr.s goes. In other words, if she takes her to the pediatrician and he does the test, well... I'm thinking she'll need a dr. who specializes in PANDAS and PANS right? That the local pediatrician won't cut it for treatment knowledge, is that right? I mean when I took my son last fall to him (same pediatrician her daughter sees) he did mention PANDAS but only did a throat culture and did not do (or even mention) the blood titer tests. So even if she asked for the blood titer test, I bet he wouldn't have knowledge on proper treatment. Is that correct? Oh, great. And, I agree beerae22 about the counselor thing. When my sister told me the teacher recommended the name of a counselor, I was like oh, my dear Lord, please don't. Nothing against counselor's, in fact 20 years ago I almost went to grad school to get an MA in counseling, and they have their place, BUT I say it's after the problem has been identified and is being worked on at least! And, I think the problem is most likely infection or something like that. And, so true that you run the risk of getting a bad one, so personally I wouldn't go either. It may help others if they find a good one, but to just take her to a counselor and not to a good dr. Not a good idea in my opinion. So, thank you for sharing that!

and now for the question about my son. (I've got extra time today so I can ask about my niece and my son ) okay, so I'll try to keep it brief and get to my question, so as not to lose people. (edited warning: this gets long! but if you have time, I really appreciate thoughts and ideas, thanks! I tried to edit it down a bit) and rowingmom, if you're still on here this morning or today, you've given me great info on this already, but I'll take more! I'm hoping that you and others might offer some more advice. my little guy (4) with lyme as of last year, did 14 weeks antibiotics and got to about 99% symptom free! But we want 100% of course! I switched him to herbals though in Sept. (antibiotics were getting hard on him and yeast was getting bad) so, after 10 weeks of no treatment (long story) and feeling 99% symptom free and really good, he started herbals (Beyond Balance) really slowly...1 drop a day, in mid-Sept.. he did well with the herbs until about the fourth week or so. I increased the dose and within 48 hours of the increase:...motor tic (sniffing) rowing mom helped me out with good advice about ticcing being an overload of toxins sometimes, and I read online other's saying the same thing, and the llmd agreed too. I do think that's what happened. so here's the rest: I stopped the herbals for 5 days and detoxed, and his sniff tic stopped. then I restarted the herbs again, 1 drop/day, and in two days back on herbs....blinking motor tic started so I stopped the herbals again, detoxed, and within about 6 days, the blinking was basically gone, just trace 99% gone. but then I started up the detox herbal formula (which I later saw has an antimicrobial in it, and a warning that herxing could happen from it) and to help detox him I doubled it's dose, and within 24 hours.......new tic! a finger, toe, and lip simultaneous squeeze that lasts about a second, and happens sometimes pretty often. So, I really believe the idea that the ticcing is happening b/c of lyme die-off toxins, and my little guy being flooded with them needing to detox. All the tics started with 24-48 hours of an increase or restart of the herbs. I wonder if yeast is in the mix here too, b/c I wasn't so good with probiotics the first few weeks on herbs and he's had previous yeast issues and has fungal cradle cap. So I have him (just as of a past five days) on Dr. Semon's anti-yeast diet (he mentions in his book that ticcing can be from yeast toxins too sometimes.) And, then there's the mold under the kitchen sink we've recently discovered and are going to take care of next week. (tried to clean a bit in the meantime, but could do better, so will try to again with vinegar). I guess I never I asked my **question**yet: I'm wondering if can take ten days or more to detox, for this tic to not be gone yet. I guess it all depends. I'm going to email the llmd and ask about giving him things I've learned and heard about like: curcumin, NAC, other ideas? Right now to help him detox I give him lemon water each day, an epsom salt and clay bath, beets juiced in juicer, but want to use more ideas. I don't think he's relapsing b/c other symptoms are still gone or the same basically. after the first tic the llmd said maybe to push through the tic herxes and continue the herbs, but I admit I'm afraid to, like I'll send him into tic orbit. I've made this long and rambled a bit, and now I have to run to get him from preschool. sorry so long. Thanks for any all thoughts! trying not to stress to much. I appreciate ideas!

more good information and encouragement! thank you guys! pr40, smartyjones and nicklemama, I can see your point about OCD not always being what we think it is. That is something to think about and be observant of. It can be quite subtle I'm sure. This is what I'm learning these days, is that no two people may present the same, but it doesn't mean that something isn't there. oh, and I hear you about some saying it's a "phase" and they'll grow out of it. I feel badly for children regarding that, b/c most adults experiencing the symptoms are children do would probably not say "this is a phase" I'll grow out of it. They'd be like "what the heck is going on here? I need to figure this out." qannie, that's good news about your son, finding the answer for him I mean and then relief. I'm glad my sister seems open to testing for strep, even if not right away. Hopefully though sooner than later, and if I mention your story, she may be open to it a little more, b/c one joint pain that my sister doesn't deny in my niece is the ankle pain she complains so, so often. I've heard her complain of foot, hip, fingers, etc., but my sister says she doesn't hear those, but the ankle she does. thanks! and Rowingmom, you're right. I can't push my sister. I want to. I want to make the appt. for my niece today, just to get the ball rolling. I love that little girl like she's my own, and her sister too. But you're exactly right about not pushing, b/c when I have, even just a little...not good; it doesn't work. My sister and I don't fight about it, but she did hang up on me once for using the word "lyme" after she had said to "drop it". (drop it about lyme that is, not the situation in general). She's a good mom and like any good mom, like you said too, she won't stop until she finds what her daughter needs. She's starting with certain roads and ideas and if they dead end, it's true she'll look elsewhere. I just so much want to save her time and trouble and say, do this, this, and this...now. But it's for her to work through. I'll offer what I know and recommendations, but try not to push (or mention lyme for awhile I guess.) oh, and interesting that you mention how the paradigm change from "medical ideas on psychiatric illness to one being based on infection and antibody based" is a hard one, b/c my sister said that she emailed my niece's teacher to ask for any ideas on the situation and the teacher came back with the name of a counselor. Now, not that counselor can't help people, but I told my sister, when she asked what would I do, that I think these things (symptoms) are more infection based really and that I would take her to a good Dr., like my son's llmd. (who deals with more than just lyme too). Let's get to the bottom of it, not just tell the child how to "cope" with and "live" with what they have. (That's what the teacher said, that the counselor could offer good coping skills. And, I can see her point a little, but I say only while at the same time you're trying to get to what is causing the problem too and trying to heal the kid. got long here with my reply. Thanks so much, and I'll take more ideas and stories if you have them.