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This is the content of the letter we've used: Please be advised that ___________ is under my care for the treatment of PANDAS, an autoimmune disease that can result in neurological dysfunctions related to streptococcal infection. Symptoms of PANDAS can include sudden-onset tic disorders , obsessive compulsive disorder, attention deficits, emotional lability, dysgraphia, fidgetiness, anxiety, sensory defensiveness and/or changes in urinary frequency. These symptoms present in a sudden onset and gradually wane over time. School accommodations that are made for other children presenting with these various challenges should also be provided for _________. There are no limitations on physical tasks. PANDAS is a pediatric illness that may resolve by the time ______________has reached adulthood. Until then, he will remain at risk for a sudden presentation of the above symptoms and will continue receive on-going medical care. I deliberately left things vague so that I could alter a 504 as things changed, without being limited by what the doctor's letter said. In our elementary school, personnel were very hung up on specific language, so the more vague, the better. The intermediate school is much more flexible and are ok with adding details outside of the letter, so I've found in both situations, vague is better than too precise. Edit - I need to update my son's letter - the school needs a new one every 3 yrs. So I'll be editing this to say PANS, as lyme is also part of his picture. You might want to use PANS and/or say that it can be triggered by infections, not strep specifically. Depends on your situation.

A friend of mine is interested in testing for KPU(pyroluria) but doesn't have doctor support. I know there's at least one lab that runs tests without a doctor's orders. Can anyone tell me the names of the labs I can pass along? Thanks

We tested DD with blood test. It isn't the most reliable but it was the easiest way to get a pulse on things at the time. We used a small amt of EDTA plus a zinc supplement (she has borderline pyroluria/zinc deficiency). Hard to say if we saw negatives - she was fighting EBV at the time and we had an undiscovered methylation problem that, in the end, was more at the root of the problem. When you chelate any metal, your biggest challenge is to get the metal to bind to something and stay bound all the way through to excretion. If you use a weak chelator, it may move that metal from where it started to a different place but not all the way out. The big debate as I recall is what's the best dosing schedule to minimize re-distribution and assure excretion. Using zinc to rebalance copper makes sense but go slow and do some research about things that will bind to the copper. If you see negative behaviors, reduce your schedule or dosing and if at all possible, do this under the guidance of a doctor who has experience with it. In my own experience, copper played a part in bipolar behaviors more than OCD.

Went to DS's open house at school last night. Three teachers this year, not just one. Getting ready to have our "meet & greet" meeting where I tell the teacher(s) about DS's history... I'm actually finding it hard to figure out what to say. The tics, the bad OCD, nearly all the symptoms are either gone or so low level compared to years gone by that I almost feel foolish bringing it all up. Except that there's still ground to make up and still the chance for a flare, so they need to know what to look out for, what skills need shoring up...But for the first time, I don't think I'll spend more than 2 minutes talking about the bad times because DS has put so much of it behind him. Like Wendy, we're not done. You know that. But mile 18 is sooo much prettier than mile 1 in this marathon. As for DD - some mild anxiety over "no one" playing with her at recess (BFF moved to school in next town). But devil child is locked away in Tanzania and DD is overall doing really well. As for me, I'm in week 2 of being on the treadmill and am trying to get serious about a project I've had in my head for years. I actually have time and emotional energy to invest in me. Go figure. And you? Have you gained any weight back? Sleeping any better? How's GB pain?

Philamom - no practical advice. Just lots and lots of sympathy for you! Keeping you close in my thoughts...

I will always be the first to put more weight in a gut feeling than anything. But...wait until you have the lab results in your hands and can look up any band info that might have an IND or + next to it. Dr B told me my son didn't have lyme because the overall Igenex report said negative on the front page. But then I got home and saw 5 IND and a few ++ and saw an LLMD, who felt that between the labs and the whole history, it was a slam dunk reason to treat lyme. And my son did improve significantly with the change in abx that the LLMD made. So I think the actual lab results are important before you close the book on it. You've heard the whole argument about why labs aren't reliable (there are 3 good articles under helpful threads in the lyme forum). You'll hear from moms here who swore for months/years it couldn't be lyme but in the end, it was a part of the puzzle. I'm one of those moms. "But he's classic Pandas" I'd say. Yes, and classic lyme too. They're so similar. And you can get lyme in Florida. Not as common by any means, but not impossible. Ok, so those are the reasons to keep an open mind. Then, there's your Typhoid Mary husband. Yep, probably part of the problem. But here's my working theory - a kid has some under-the-radar health problems when along comes a bacteria - strep, lyme (they share a few outer proteins that make them look alike to the immune system). The body has an autoimmune reaction - PANS. Subsequent infections - whether it be strep, myco, lyme, a virus - can always come along and now cause the same response. So you need to treat the underlying infection and subsequent inflammation. The major practical difference is which abx will you use? Answer - the one that helps. I got myself so tied up in labels at one point. At the end of the day, it only matters what we do to treat it. I personally think some of the things that are helpful in lyme are also helpful in Pandas (detox, immune bolstering supplements). If Dr B is giving you an abx combo that's helping and treating your DH, then does it matter what you call it? if the specific abx choice isn't helping DS or DH, then work toward finding one that does. If you reach a point where you need fresh ideas, or things stall, then look for an integrative, DAN or LLMD who can add more tools. Trust your instincts but also don't get into knots on what "it" is. I slept better at night once I got over "it" having to have a single name.

Don't beat yourself up. My kids take 15 Billion and do just fine. So don't feel like you were way off the mark. Everyone's "right dose" is different. Probiotics will be necessary while you're treating but I don't believe you can beat C Diff with probiotics alone. Also, if you end up using an anti-fungal like nystatin or diflucan, it will kill the Sacc Boullardis as well as C Diff. You want to use a variety of strains to replace what's being killed by the abx and anti-fungals. Like mdmom, we do not have an issue with S Thermopolis. My son does, however, react to Sacc B. So there's no universal answer. You just need to try something and if you don't see improvement, try something else. Just be aware that something you try could end up not working. Can't tell you how many months I blames other things until I realized by elimination we had a problem with Sacc B. Makes no sense. But everyone's gut is different.

You can have babesia all by itself. There are multiple strains, so a test for one strain could miss it if you were positive for a different strain. You can get babesia from a tick but you can also get it from a blood transfusion - from the CDC website: In an article published in 2011 in the Annals of Internal Medicine, CDC and collaborators described 159 transfusion-associated Babesia microti cases that occurred during 1979–2009, most (77%) from 2000 to 2009. No Babesia test licensed by the Food and Drug Administration is available for screening prospective blood donors, who can feel fine despite being infected. http://www.cdc.gov/parasites/features/babesia_article_9-5-11.html This is from whole blood. I don't know if you could get it from IVIG. (not trying to scare anyone - I just don't want to be falsely reassuring and say you can't nor do I want to be an alarmist and suggest you can - I honestly have no idea). Babesia is not a bacteria (lyme and bartonella are). Babesia is a protozoa that lives in the red blood cells. Generally treated with an anti-malaria drug like mepron and an erythromycin abx. Some LLMDs use artemisinin. If your DS did have babesia, it would be a good idea to check for lyme and bartonella with a lab like Igenex or Advanced Labs, even if you've done a lyme test with a lab like Quest in the past. But it is possible to have one without the other. All this being said - don't freak. Your DS is no sicker today than yesterday. You just have a new lead to check out. Make sure you still get some sleep tonight.

Yes to any of your answers. There's no single answer. Often, it takes my DS about 6 weeks for a flare to calm down after antibiotics have killed the infection. But if your DD's symptoms get worse when you stop abx, it suggests that either the infection isn't gone or that the abx are helping to control the immune system and inflammation. Some here have found that there was a chronic infection - a chronic sinus issue, mycoplasma pneumonia (which can takes months of abx), lyme or bartonella (both from ticks). So you stop the abx and the infection is still there and it starts all over again. Many here also keep their kids on abx both the treat a current infection and to prevent any future infection. This is the standard protocol for rheumatic fever - the risk to the heart from a second infection is too great, so people are put on abx until adulthood. You can also use motrin to help with the inflammation. Motrin will lessen my kids' symptoms in about 20 min. In bad times, I'll give them a motrin every 6-8 hrs non-stop for a week or two. it has to be motrin (ibuprofen) not tylenol (aceteminophen). Tylenol doesn't do squat for our kids.

i think there are two important things we did to survive. First, you need time away from DD4. Sounds awful, but the time away is the only way to recharge. You can't give and give and give and not get empty. For me, it was when the kids were in school. But if your child isn't in school or daycare yet, or if you can't afford a sitter or rely on family because things are too crazy, then take turns with your DH - bot one way or the other, you need time away sometimes. Time to breathe. Even if it's grocery shopping or running an errand. Second, you need to make time for your DH and you to talk. Going on a date might not be practical. My DH and I tend to do it in the mornings when we're showering/shaving/primping. The kids are still asleep and we can have honest, uninterrupted conversations. Because it was also a limited amount of time, DH liked it because he knew it wouldn't drag into some long, uncomfortable talk. But it was a 15 min check in to keep us on the same page and hash out differences. In general, one parent takes this thing by the horns, does the research and the doctor thing. Over time, that parent's views go one direction. If you forget to update your spouse with your current thinking, you tend to drift over time and end up in different places. My DH is famous for remembering the bad stuff and thinking of good moments as a fluke. So his mindset would be DS is a jerk who happened to be nice for one moment and my mindset was that one moment was the real DS and the raging, jerk stuff was the disease. I needed to keep reminding DH of evidence that supported my view of the world. I also needed to give him very short summaries of the medical evidence and what I wanted to try next. He didn't want to know details. Just short, sweet a-b-c summaries. Having only 15 min every morning helped me keep things concise and kept him in his comfort zone. It's really hard on the whole family. The best thing to do is to keep pushing for a medical treatment that works, that gives the family some room to see glimpses of normal. But during the process, remember to talk to your spouse and be there for him. Part of my DH's problem was that he didn't just lose a child to the disease but his wife too. I wasn't able to be there for him because I was too busy being warrior mom. But men tend to have no outside support network. If their BFF (you) isn't available, they're lost and that tends to make them very cranky. Do all you can to make sure you're both rowing in the same direction, even if that means putting the needs of your DD aside for a few hours a week. I wasn't always good at this but somehow, you have to find balance.

I think given your DDs history, it's very reasonable to consider PANS and to continue to push for a steady dosing of abx to maintain the improvements. Does that mean it's PANS or Pandas? Not sure. But I think it means it's worth pursuing and to me, it does suggest that there's a medical cause of her issues and a medical treatment. I have to disagree with LaurenK that if a doctor gives a diagnosis, it must be so. That wasn't at all true for my kids. I know that sounds like I'm saying to doctor shop until you get a dx or treatment that you like. That's not really what I mean. But I do think we know our kids and no kid who's permanently impaired has moments where she's sharp as a knife. If those moments exist, then that's the baseline that's possible. To me, it suggests working with a doctor who has a large toolbox and who believes that autism is only a label for a group of conditions we don't understand and that the things you're seeing are medically treatable. That might be a Pandas doctor or a DAN (Defeat Autism Now) doctor or an LLMD (lyme literate MD). But it sounds like an integrative doctor who considers a broad range of medical issues, who tries to support as well as suppress the body's systems, could really help you. When we were considering a neuropsych eval, our Pandas doc told us to cancel, that all we'd be doing is measuring the impact of the disease, not my son's true abilities. She suggested we treat the illness first and then if there were residual issues, test at that point. So the labels and findings you have can be useful in obtaining therapies and an IEP but if your heart tells you that there's a bright lamp hidden under that basket, believe that feeling. My son got sick when he was 5 but had sporadic issues as a toddler. In my own experience, yes, he had delays that have gone away with treatment. The single biggest factor in my son's delays was that he has pyroluria - a genetic zinc/B6 deficiency, as well as a chronic infection. Once we started supplementing (under an LLMDs guidance), it was like someone turned a dimmer switch from low to bright. He had/has lyme and Pandas as well. But he needed more than just abx to help him literally emerge from the fog. Bottom line - trust your instincts. Fight for what your heart tells you. Keep digging.

Thanks Nancy! Liked the article and it gave me the encouragement I needed to keep believing DS will continue to recover and regain normal everything. I just didn't care for the last comment that "Autism currently cannot be cured. At present, only the symptoms of the disorder can be alleviated through behavioral therapy and other treatment." Yes, it can be cured and you can do a lot more than behavior therapy. Grrr..But I preach to the choir. Thanks for sharing!

I think there are two levels of fighting inflammation - the "this is a crisis and we need big guns" level and the "oh crap, it's bubbling up and we need to get on top of this" level (sometimes it's the "I wish I had a big gun but don't, so what can I find in my own house" level) Big guns are things like plasmapheresis, IVIG and steroids. Big guns need a doctor on board. Coping guns are things like motrin - not just one dose but steady dosing for a period of time curcumin, tumeric (Enhansa is a product that is made of tumeric) anti-oxidants like alpha lipoic acid, resveratrol, vitamin C, vitamin B6 which is needed for a working detox system antihistamines like quercetin, allergy meds and pepcid/prevacid which also block a type of histamine and seem to help some kids diets that heal the gut things that help close the BBB like lecithin and phospholipids supplements that support "calming" neurotransmitters like 5-HTP, tryptophan, gaba also, some antibiotics have anti-inflammatory, immune regulating traits These things may not all be "true" anti-inflammatories, they help to calm things down. You're absolutely right. You need to get rid of the infection as step one (plus be on the look out for things like mold and yeast). But then stopping the inflammation is step 2 and also necessary before the behaviors recede. The other thing that I've found hugely important is to have a system that's not clogged up. It's why methylation is so important to me. If your body's systems aren't working properly, the impact of inflammation gets amplified. I think this stuff probably gets discussed a lot, but maybe not on threads dedicated to the subject and not always using the term "anti-inflammatory". I tend to use the term detox but in my mind, detox helps reduce inflammation. So trying to say the same thing but using different words.

Chemar, I agree that the confusion on names is a problem. But I want to offer a different view of why using a doctor's full name may not be such a great idea. The handful of docs who have built their practices on Pandas generally use prophylactic antibiotics as part of their protocol. This practice is vilified in general media and by professional associations. In the lyme world, using a doctor's full name and discussing his/her treatments and patient discussions in an open forum has led to those doctors being criticized and in some cases, being brought before medical boards to defend their protocols. It scares doctors away and makes them afraid to try "non-standard" protocols even when overwhelming anecdotal evidence suggests it's the right thing to do. In CT, it became such a with hunt that they eventually passed a law protecting a doctor who prescribes long-term abx. Few states offer such protection. So the etiquette on lyme forums is to use a doctor's initials and if more details are wanted, you use the private message option or clarify with the state that the doctor is in. In this case, Dr L in CT not Dr L in MD. It's why you see "our LLMD" instead of using a name. If you want to know who that LLMD is, you PM the person. I personally think it's fine to say "we have an appt with Dr Leckman at Yale, can anyone PM me some info." But it would be unwise, IMHO, to post opinions, excerpts from patient conversations or protocols in a thread that uses that doctor's full name. But it would be ok to say "Our Pandas specialist said..." There are so few doctors willing to treat. And a few very passionate anti-pandas people who may lurk, or disgruntled parents in a divorce situation, looking for opportunities to use hearsay against a doctor and send a warning to other doctors. Look at Dr Jones in Lyme, Dr Usman in autism, who's currently facing litigation over advising a patient take vitamins (brought about by an ex-husband who objects to the wife's choice of treatments and the expense - not over whether the child improved (which he did)). So that's the flip side. Personally, I'll take the confusion over the risk. Just my perspective.

If you're looking for a "natural" anti-anxiety option, you can look into 5-HTP or tryptophan or Gaba. My daughter (50lbs) took 500mg tryptophan for a few months and it helped a great deal (but start out with a lower odse and build up if needed). You can go to the search bar in the upper right corner of this page and search on these supplements for old discussions. For allergies, we use quercetin, which is a natural flavonoid http://www.umm.edu/altmed/articles/quercetin-000322.htm We use 500mg in a capsule that also contains bromelein, which improves absorption. It doesn't last as long as an OTC pill (generally we get about 4 hrs relief) but it has no side effects. You may also want to read up on mold, which can really mess with your health and cause neuropsych issues, particularly rages and anxiety, at least in my experience. I used to think mold wasn't a problem, but then I looked in the plastic catch drum of my washing machine (the one that the visible metal drum sits inside of) and was appalled. Also found some under the kitchen sink (from a drip), under some old rugs we replaced, and in some attic insulation under a vent in the roof that had started to leak, not to mention the mildewy boxes in the basement clutter.

There are many things that effect methylation. Methylation is a process that occurs thousands of times per second in your body. Think of it as a sort of metabolism, even though that may not be the medically correct word. When doctors talk about the methylation cycle, they're talking about a specific type of "metabolism" that effects a handful of essential chemical processes. Picture a rotary or roundabout on a roadway. Cars enter into a one way circle and can get off at various exits along that circle. Well, if there's a traffic jam at one of the exits, it mucks up everything in the entire circle and along all the roadways that branch off of that circle. You can have a traffic jam due from two causes - poor diet or genetic mutations. Epigenetics is the emerging field of understanding how genetic mutations can cause traffic jams. Unfortunately, while there are several genes involved in methylation and related processes, there are only a few that you can test using commercial labs. The one most commonly available is the MTHFR genetic test. Here's Quest's test: http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=17911 But any lab in your area probably has a similar test. If you have one type of MTHFR mutation called C677T, you need to take a modified form of folate (vitamin B9) instead of the regular form found in most vitamins and fortified cereals. If you have another mutation called A1298C you need to take different supplements to help detour around a different traffic jam. There are other mutations but these two are the only ones you can test for with a commercial lab. You can also have a perfectly normal MTHFR gene but still have methylation traffic jams if your diet isn't giving your body all the right nutrients to keep traffic flowing. One thing to test is your level of homocysteine, which gives a peek into how one part of the traffic circle is doing. You can also test methionine levels which peeks into a different part of the traffic flow. But this is something that seems to be touched on only briefly in medical school. If doctors have heard of it, it's primarily in the fields of heart disease and stroke. Very little focus has been on how methylation also effects seratonin and neuropsychiatric issues. But for my daughter, this is the piece that has really improved since addressing methylation. Her seratonin levels have stabilized and her mood swings and anxiety are gone (knock wood). The best advice is to work with a doctor who's up on this emerging field - like a DAN or an LLMD who attends conferences or is tuned into new developments. The other part of the methylation circle leads to a road that is your body's detox pathway, known as your transsulfuration pathway (think of this as the road to the garbage dump). Having a traffic jam in the methylation cycle can leave you short on resources to clear your body of damaged cells and toxins, meaning garbage starts to litter the highway instead of making it all the way to the dump. There are also other pathways that feed transsulfuration and they can cause problems too. My son has a genetic mutation that makes him deficient in zinc and B6 (a condition called KPU or pyroluria). Since B6 is needed for a smooth transsulfuration pathway, he got a lot of traffic jams in this part of the highway system. So one thing you can do is test for pyroluria to see if this is a problem. You can also take supplements that help the transsulfuration pathway and encourage the body to make glutathione (the body's most important/bountiful antioxidant). These are the things Red and I discussed earlier in the thread - alpha lipoic acid gets converted into glutathione, so you can take alpha lipoic acid supplements. Resveratrol, vitamin C, CoQ10, tumeric, curcumin, taurine - also work in various ways to support your body's efforts to get rid of damaging substances and reduce inflammation. As Red pointed out, this is a very complex topic - since I have no formal medical training, you need to realize I'm greatly simplifying my explanation and may not always get things 100% medically correct, I'm only trying to paint a picture, not give medical advice. A doctor who understands this stuff is worth his/her weight in gold. Unfortunatley, they are very hard to find. But by looking at the traffic jams, you can really make great gains in your overall health. I'd personally start by testing for MTHFR mutations, pyroluria and homocystiene and cysteine levels. You can also test your HLA-DR gene, which effects how well you can get rid of toxins and discuss with your doctor how well you tolerate sulfur, which plays a big role in transsulfuration.

Ditto here. A herx looks a lot like a flair. Like DeeDee, it does seem to come with more physical complaints - muscle pain, headache. But lots of anxiety and a return of various Pandas symptoms. I think the overlap between lyme with neuro symptoms and Pandas is why we annoying lyme moms keep chiming in abou tthe lyme stuff. It's really hard to tell the two diseases apart in many kids. Flairs look a lot alike. It's a common complaint that when you're herxing, you can't tell if the treatment is actually doing any good or doing nothing. The only way you know is when it's done and you can see whether you feel better or not. But during that time, no good way to tell them apart. Like S&S, I tend to see a loss of control. DS loses impulse control and temper control. I gets lots of "I don't feel good". Lots of calls from the school nurse or mornings where he tries to stay home. Herxing for us also comes with yeast issues - hard to recognize in a boy. So we give an odorless garlic pill at dinner and that seems to keep yeast in check. Motrin helps, keeping the bowels moving (trufiber, miralax, magnesium), binders like charcoal or bentonite clay might help (tho timing becomes a problem b/c you don't want to bind other meds, so they need to be taken away from other things), you can also supplement with things that increase glutathione and detox - alpha lipoic acid, resveratrol, CoQ10, vitamin C, lycopene (tomatoes). When all else fails, take DCMom's advice. She posted about tips for helping a kid face school fears - that "what if this happens" loop of fears - and her advice was to repeat the mantra "whatever happens, you can handle it". Many days, the dog finds me walking through the house muttering "I can handle this...I can handle this..." Good luck!

Timely post, SFMom. Our LLMD has been working with Lee Silsby on an Enhansa trial with his lyme patients and is going to present his findings at ILADS in Oct. He's seen really positive things. I've tried a Xymogen product with tumeric that didn't do much. But supposedly Enhansa has been pretty effective at knocking down inflammation. My DD, who does not have lyme and is doing really well in many ways, has been struggling with some sort of allergy (DH is struggling too). LLMD said her nasal passages are nearly swollen shut. No mucus, just inflammation. Zyrtec and quercetin only help a little. But she can't sleep at night - can't breathe. So we're going to start a trial of Enhansa this weekend (free samples - yeah!). But we were warned that if there's anything low-level - like yeast - the Enhansa will go after it and could cause a flair for a bit. So I'm waiting until the weekend just to be cautious. In the meantime, it's good 'ol motrin to the rescue. Dee - not sure where you're at exhaustion-wise or funds-wise. But three tests we found to be very helpful when DS hit a detox/herx quagmire were: MTHFR, HLA-DR and KPU/pyroluria. You know all about MTHFR and KPU. HLA-DR is a gene that effects your ability to detox and regulate immune response. 25% of the population carries a mutation that makes it hard for them to detox. KPU also effects your body's ability to handle infection and control the immune response. So a few things to add to your list for your next LLMD appt. Here's info on HLA-DR: http://www.survivingmold.com/diagnosis/lab-tests Shoemaker is the mold guru but some of his tests were helpful in measuring DS's level of inflammation. Like you, we backed down on treatment and loaded up on anti-inflammatories. Took about 3 weeks from the time we stopped tindamax until things calmed down. But...as Wendy said, we then saw that we'd taken a big step forward and had a new, better, baseline. I know it's really depressing to be in your spot. Lots of swearing under your breath and doubting whether you have the strength to keep doing this. You feel like Alice who just slid down the rabbit hole. It does get better...eventually.

FYI - Sacc B is also available from Jarrow http://www.amazon.com/s/ref=nb_sb_ss_i_1_11?url=search-alias%3Dhpc&field-keywords=jarrow+saccharomyces+boulardii&sprefix=jarrow+sacc%2Chpc%2C147&rh=n%3A3760901%2Ck%3Ajarrow+saccharomyces+boulardii&ajr=0 for significantly less money. One word of "heads up" - everyone's gut is a little - or maybe very - different. My son cannot tolerate Sacc B. I don't know why. Everything I've ever read makes it sound like it should be great for everyone. But it makes my son angry and agitated. Which is a real bummer since Sacc B is far less expensive than what we now use (Theralac alternating with TruFlora). Like Nancy said, because Sacc B is a yeast, it isn't killed by abx and don't have to worry about when you give it, whereas all other probiotics have to be taken at least 2 hrs away from an antibiotic and preferably at a time when the stomach isn't in full gear because both abx and stomach acid will kill other probiotics. So by all means, give it a try because if it works for you, it's a great and affordable solution. (tho a few times a week I'd still add a second probiotic for flora variety). But if you happen to see some negative symptoms and can't figure out why, stop the Sacc B for a few days and see what happens. Some kids can't tolerate it, for whatever reason.

I'm not against an SSRI - totally get this little concept of coping while enduring a herx. Often, the inflammation takes way longer to resolve than other things. If you decide it's what you need to do to function as a family, do it. The only other idea I have is to try 5-HTP or tryptophan first. I've found two schools of thought on using things to improve your seratonin picture. The SSRI school says that you can increase seratonin by making it stay in the synapses longer, slowing down the re-uptake time. The supplement school says if you don't have enough seratonin in the system, slowing down the reuptake rate doesn't do the trick. A mom sent me this fascinating link on the two concepts http://www.neuroassist.com/01%20Depression%20Johns%20Hopkins%20with%20cover.pdf. It talks about dopamine and anxiety/depression but the same theory holds true for compulsions/seratonin. The author says that if you take a reuptake inhibitor and cause the neurotransmitter to stay in the synapse, the neurotransmitter is degraded by enzymes and some of your "fuel" is used up. Eventually, you deplete your levels of neurotransmitters and the inhibitor you're using "poops out" or stops working at that dosage. You need to up the dose to get the former result. But eventually, your resources become tapped out and the drug stops working entirely. So patients end up having to switch drugs. This author says that instead, you can increase your intake of amino acids - either l-tyrosine for dopamine (which helps DS immensely) or 5-HTP or tryptophan for seratonin (tryptophan helped DD a lot in a dark time before we straightened out methylation). Then you don't need a reuptake inhibitor. He also talks about needing to support methylation (tho he says to just use folate but if you have MTHFR, you'll need methylfolate). This is a chapter of a book from Johns Hopkins. The author was a researched at Univ of Minnesota but has left since its publication. Like I said, not discouraging the SSRI. The one advantage I saw in using tryptophan was that you don't need 6 weeks to taper up and down. We built up and tapered down much faster than what you'd do with an SSRI. But whichever you chose, you're only doing what you need to. As for your DH, it's a double edged sword, but at least he cares enough to be involved and ask questions. You're in my thoughts.

I think you're right to trust your instincts about when your son is not himself. But two things in your post concerned me. First, when you say But I give in to my son's demands at times because I know that they are more ocd driven and pandas influenced than my 5 year old trying to manipulate me into something. I do not have power struggles over something that will take 45 minutes to resolve when it is benign and fueled by pandas and not by conniving boy. I believe in peaceful parenting, not authoritarian styles of parenting. How can I convince people that it is my son and his pandas and not my mothering? If a behavior is OCD driven, giving in in order to avoid a meltdown is one of the worst things you can do. OCD is a tyrant and the more it gets its way, the stronger it becomes. It isn't about a power struggle between you and your child, it isn't about being an authoritarian parent. It's a power struggle between you and OCD, about being a parent who will not become a pawn in OCD's game. I'm hoping the ERP experts will chime in here. But most of us who've been there will tell you that accommodating only leads to more OCD demands. Think of OCD as someone who's kidnapped your child and is demanding a ransom. You need to stand firm on things you feel are OCD-driven. If it takes 45 minutes, so be it. You may really want to get "What to Do When Your Brain Gets Stuck" by Dawn Huebner. It does a great job of explaining how to stand up to OCD. The second thing that struck me is that you paint a picture of you against all the other adults around you. Even if you're 100% right, creating this kind of me/them dynamic isn't going to be healthy in the long run. Pandas is a long battle and it takes a heavy toll of marriages and family relationships. You need to compromise and get other adults to feel they're on the same team. Perhaps there are issues where being more firm would be helpful, not just in terms of helping your son feel there are limits (which helps kids feel safe) but also to help your DH feel like you're hearing him and willing to meet him somewhere in the middle in your parenting. I totally get the conflict that comes when everyone thinks your child is a brat who just needs more discipline and yet you see it as illness-driven, requiring a sympathetic response. Happens in my house too. But in the long run, everyone needs to be rowing in the same direction or you'll end up exhausted and stuck. Not saying your viewpoint is wrong. But it sounds like a warning sign. A little family therapy might help. It helped my marriage survive some ugly times.

I was "schooled" on the lyme forum by a new member for not having a medical background and trying to discuss highly complicated issues, so bear in mind this is "only a mom" giving you my (clearly uneducated) understanding on the topic. But my simplistic view of detox thinks of it in 3 stages: First, your body uses anti-oxidants as little garbage men who scavenge the body, picking up damaged and dead cells. (the garbage men are called phagocytes and the garbage trucks are fueled by anti-oxidants. Second, the garbage trucks go to the dumps known as the liver and the kidneys, where the garbage is sorted, the trucks are cleaned and refueled. Other technical stuff happens. Third, the waste products are sent to the final disposal sites of the bladder and intestines. I describe this entire process as "detox". You can focus on one or all of the above stages to help the body. If your detox system gets clogged, you get inflammation and toxins leak back into the body, doing more damage. So..to boost the first stage, you can take supplements to increase anti-oxidants. Glutathione is the mother of all anti-oxidants but it's poorly absorbed if taken as an oral supplement. So you can take something called alpha lipoic acid, which is a glutathione pre-cursor, or you can take other anti-oxidants such as vitamin C, resveratrol (the stuff that makes red wine good for you).. To help with the second stage, especially to help the liver when taking antibiotics, you can take milk thistle and you can push fluids to keep the kidneys flushed. There are other things as well but my memory is rusty on options. To help with the third stage in the bowels, you want to make sure that the bowels move frequently by using fiber or psyillium husk or apple pectin (constipation allows toxins to be reabsorbed instead of excreted) and some people chose to use a binder that will hold on to waste within the intestines to reduce the chance of reabsorbtion (e.g. activated charcoal or bentonite clay or chlorella). However, given your child's age, pills might be an issue. So you need to do what's practical. Also, inflammation becomes an issue with both bacteria die off and with detox. So motrin, tumeric, curcumin - can help. You also mentioned yeast, which can cause many symptoms similar to PANS. Garlic pills help my kids. You can google natural yeast treatments and pick something similar that might be practical and of course, always use probiotics. Vitamin Shoppe carries a strawberry banana flavored probiotic you can add to a juice drink if pills are an issue.

As Momcap said, testing CSF is as inconclusive as testing the blood - needle in a hay stack. Plus subjecting a child to a lumbar puncture is no easy decision, as those who've done the IVIG study can attest. Lots of risks/expense/trauma for a test that doesn't yield reliable results. If you haven't read it yet, I highly recommend Cure Unknown by Pam Weintraub. She gets into the tests and shortcomings and political backstory. It really helped me understand the landscape and become more comfortable with the idea of testing based on clinical symptoms. If your other options are treating a disease with no cure (MS) or taking meds to alleviate symptoms without addressing the "why" of how a 19 year old develops joint and muscle pains and can no longer climb stairs, if it's inexcusable to have a doc blame the patient (somotaform? really?) because they can't admit they don't know something...or visiting with an integrative doctor familiar with lyme, I know which option I'd go with. Read Cure Unknown - I think you'll see your DD in the book and go OMG! I'd definitely read it before scheduling a tap.

For those of you who've done it as a way to support your child's health as opposed to having the goal of a "cure" - would you do it if it was out-of-pocket and your child's flairs were getting less severe over time? I believe this is Bee's situation. Personally, I could not afford $5-7K on something that wasn't going to knock things out of the park. Bees - some of the things you post are similar to my DD (not my DS, whom I tend to post about more often). She too was vague on Igenex with only 41 and 39. We too did 8 mos of combo abx (zith+bactrim) and while her C3d complexes did drop from 90+ to 20+ (which is now considered in the normal range) - suggesting some sort of infection was cleared...her PANS symptoms continued to wax and wane. So it made me dig beyond infection and become a methylation geek. Treating her MTHFR (after completely screwing it up for a time and overdosing her into a complete witch) has brought her to a great place (knock wood). I love Dr L. Could go on and on about how I respect her and her knowledge and genuine concern. But there are some issues not on her radar. Methylation seems to be one of them. None of us can possibly give you the "right" answer. if you do decide to go forward with IVIG, please consider a good post-treatment plan that focuses on inflammation, detox and methylation (regardless of whether your DS has any MTHFR mutation). If you decide not to go forward, please consider these same things. Best of luck with whatever path you choose.

Have you gotten your lyme test results back yet? My son's tics resurfaced when we were especially aggressive with lyme treatment. It was a problem with his body not being able to clear the toxins quickly enough (dying bacteria release toxins that caused his tics). We backed off that particular abx and his tics resolved. Cipro is a heavy duty abx. One thought would be to discuss an on/off schedule of cipro - maybe on for 3 days and off for 4 type of thing - but it depends on your lab results.