LNN

So glad to hear about your success! Wishing you and your entire family continued healing and happiness!

Saw this posted on FB and thought it was worth passing along. I found the book helpful when first learning about lyme and different ways to approach treatment...http://www.amazon.com/gp/product/B00405R6VC/?tag=untagged-20 Normally a $46 book, now free for Kindle download

Nitshel - I hope it didn't sound like I was minimizing the hardships of tics. Just trying to reassure you that they can go away. It took a long time to uncover what was going on with my son. There were obvious things (strep), less obvious things (lyme) and things I'd never heard of (pyroluria and methylation). So hang in there. if it's any help, we could never find a trigger for my daughter either. Her Cunningham panel was more positive than my son's, yet she's never had strep that we know of. Her lyme labs were iffy. Antibiotics helped at first but they didn't completely do the trick. For her, a custom methylation protocol is what's brought her from being bi-polarish to really, really good. Everyone's solution is a little different. Try not to get discouraged. Fear is a great motivator - it's how I motivated myself to learn lots of geeky stuff at 2am! Your dedication to your son will get you there. It could be that you just haven't looked under the right rock yet.

Thanks S! So good to hear from you again. Going to read these for dessert tonight.

Nitshell - hang in there on the 23andMe - my DH had to redo his test too. It was hard waiting but worth it. I personally wouldn't start methylfolate+methylB12 unless you know that you have an MTHFR defect. If you don't have this defect, you don't need the methyl forms of these vitamins. You can handle regular B9 and B12. Yasko - the guru who'se written the most about the topic, suggests treating a CBS mutation (if there is one) first. I didn't do it in this order b/c I had MTHFR results 6 months before 23andMe became affordable, so I treated for what I knew to be a problem. But I wouldn't just start taking methyl forms of vitamins without knowing your MTHFR status. My son has normal MTHFR and giving him methyl forms of supplements would make him angry and racy. It's not a good thing for everyone. As for how long to see progress, it depends on how many methylation defects you're dealing with and how many things you get "right" out of the gate. When I started giving my daughter methyl supplements, I started too high and it wigged her out. Had to go thru a series of trials and errors. In general, I can see if something's having an effect in a matter of days to a matter of a few weeks. There is no universal place to start or core supplements everyone should use. It's very individual. Some supplements you can get from amazon, some from health food stores and a few, like methylfolate, can only be found from a few sources. Yasko's site - holisticheal.com - is the only place i've found methylfolate in a liquid form without additional ingredients. To get started on methylation, I'd start here http://autismnti.com/images/Website-_Yasko_Education.pdf Then when you get your results, post and one of us will direct you to the sites you need to use to help you interpret those results. the basic 23andme report won't be much help. You need to spend a few minutes data mining to get started.

It may. But I don't think IVIG "cures" that child from ever having another flare in the future. I think that until the issues the predisposed that child - leaky gut, weak BBB, methylation hurdles, diet, lack of tools to manage anxiety, weak immune system... - are treated, that child can't walk into a future free from worry about another episode. IMHO, IVIG alone is not enough to "cure" Pandas. But again, we are each entitled to our opinions and I didn't post this to start an argument. My hope is that it would offer some encouragement. If it didn't give you that, then ignore the rest of the thread. Clearly you are not in a place where this speaks to you, and that's ok. But please don't suggest that it's an inappropriate message for others who are in a different place or that I shouldn't have posted it.

Sorry you had such a negative response. I find a message that says "hey, parents, it's your support that matters most to me, even if you can't remove all of my challenges" to be a positive one. I didn't post because the author has Pandas. But lots of our kids have OCD, so I felt it was relevant. I don't post on the OCD forum and it's not very active. I felt that parents here may appreciate a message that thanked them for believing in their kids. Ok - so the author had a tough childhood. His message is that from those struggles, he emerged with gifts and looks to a future with promise and optimism. There's a girl in my son's school who's spent her life in a wheelchair. When my son would moan about the unfairness of having Pandas, I'd remind him that there were many people who'd gladly trade places with him. Helen would love to be able to run and climb and swim and not rely on a bag to hold her urine. Yes, Pandas is awful. But it's not the worst thing someone could deal with. When we sat in the lobby of the pediatric oncology wing at Georgetown waiting for pex, it was a real eye opener as to where my child fell along the pity party spectrum. I knew then that my son would eventually conquer his disease. Some of the kids around us wouldn't be so lucky. I disagree about how a couple of IVIGs will restore you to completely normal. But we obviously have different life experiences and outloooks, and you're opinions are as valid as mine. So I apologize if this post upset you. But I found the story of an OCD survivor who thanks his parents to be worth sharing.

Not sure which Dr you're currently working with, but you may want to discuss either a different abx combo or some yeast/stool testing. Augmentin+zith combo was never very effective for my DS (Pandas/lyme - big ticcer). I wouldn't expect a herx 3 weeks after introducing the combo. Usually, I saw herxing either right away or within 2 weeks, withs ramping up over the course of a few days. To see a sudden and dramatic onset suggests a few possibilities - 1. it's yeast 2. it's the lyme life cycle and you're seeing an uptick in symptoms as some lyme spirochettes leave a biofilm and replicate, setting off to form new colonies. The lyme life cycle is 3-4 weeks. So mark the sudden change on a chart or calendar and watch for a pattern. 3. it's some other infection or change in medication - did you complete some sort of viral treatment recently? Have you added any supplements in the past few weeks? 4. Have you considered heavy metals? 5. Are there any seasonal allergies at play - ragweed? mold spores from a basement that's been damp with humidity all summer? My son's tics showed up when he was struggling to handle toxins from dying bacteria. I know they're hard to live with, especially vocal tics and misunderstood symptoms of corporalia. But try to remember that these are symptoms, not the root cause. When you get to the root cause, the symptoms will subside. The thing that freaked me out most about tics was the public nature of them and the fear that they'd never go away. They bother me less now when they ocassionally return because I know that it's just a sign that we need to eradicate something and that once we do, the tics will go away. If you're not yet working with an LLMD, I strongly urge you to get to one. Even if the Advanced Labs culture comes back negative, LLMDs are the best versed in all these other related issues I've listed.

I came across this blog and thought some parents might like to know that even if we can't erase all the struggles our kids face, they can still blossom and accomplish amazing things. Supporting them and believing in them does mean the world to them, even if we" fail" to provide them with idyllic childhoods. Struggle can sometimes bring important gifts. Guest blog post by Fletcher Wortmann - I don’t envy anyone whose child is diagnosed with a mental health challenge. You learn that they’re walking a difficult path - without a guide - and one you may not even have recognized that they’re walking. My father told me once that if he could, he would take the suffering I’ve endured because of my OCD and carry it himself, in a heartbeat. I suspect many of parents of mentally ill children can understand that sentiment. But as infuriating and heartbreaking as it must be, no parent cannot carry their child’s burden, any more than my dad could carry mine. In caring for a child with a mental health challenge, your responsibility is the same as any other parent’s: to support your child, to lift them when they stumble, to guide them away from dangerous roads, to help them until they’re ready to strike out on their own, if they can. Those of us with mental health challenges may require more support, more care, more understanding. Taking care of one of us cannot be easy, and you’ll probably make mistakes along the way. But, I promise that you can help your child thrive, as long as you know when to speak up, and when to listen. That said, I understand that “you’re going to screw up, but hopefully you won’t screw up too badly” isn’t the most inspirational message. So if I can have your attention for a moment longer – I’d like to offer you a message of hope. One thing I’ve realized through writing and therapy is that, through most of my childhood and adolescence, my OCD ran my life. I was miserable, my parents had no idea what was wrong with me, and my therapists weren’t helping. But through those long, unhappy years, my family and I never would have guessed that I’d one day receive effective diagnosis and treatment; that I would successfully graduate from Swarthmore College, publish a book, and pursue opportunities that would eventually give me the opportunity to address you here, today. Did we all have to compromise some of our expectations and goals along the way? Absolutely. In college, I had to drop my plans for an honors degree and scraped by with the absolute minimum number of credits. I’ve had to leave part-time jobs because they couldn’t accommodate my disorder. But my parents never gave up hope. At every step, they’ve been there to support me and encourage me to achieve whatever my "optimal outcome" might be. This is something they’ve taught me not only through their words but by their actions: When I was young and already presenting a bit of a challenge, my mother left a successful career at Hewlett-Packard to raise me and my sister – while doing volunteer work in our community to continue to put her MBA skills to use. And my father left a big Boston law practice to work as a prosecutor for the federal government, helping to make the city safer. My mom and dad taught me: don’t define success according to other people’s standards. Be kind to yourself and be kind to the people you love, and things will work out. No, I'm not going to medical school, I'm not going to a fancy New York or Iowa MFA program. But I am living independently. I’m attending grad school. I have friends. And though these victories may be modest, I’ve built a life for myself, and not a day goes by when I’m not proud of that – and will forever be grateful to my mom and dad for their help. My message to you is, never give up hope, and never stop encouraging your child to accomplish their own “optimal outcome.” It's not going to be easy, and you’ll likely have to make compromises – but with your support and love I know your child can build a life, too. Copyright, Fletcher Wortmann, 2013. Author of Triggered: A Memoir of Obsessive-Compulsive Disorder (St. Martin’s Press), named one of Booklist’s “Top 10 Science & Health Books of 2012”. http://www.fletcherwortmann.com http://www.psychologytoday.com/blog/triggered

Prednisone is an anti-inflammatory and the current thinking is that if prednisone helps to reduce OCD/Pans symptoms, then that provides clinical evidence that those symptoms are inflammation-induced (and potentially auto-immune in nature) rather than "garden variety" OCD, which should not wane with prednisone. It's a piece of evidence that clinicians can use to affrim their treatment/diagnosis. But it doesn't mean you don't have Pans if you don't respond well to prednisone. As they say in lymeland, absence of proof is not proof of absence. There are reasons prednisone may not help - such as if you have an on-going infection. If you use prednisone for poison ivy but continue to romp thru poison ivy every day while you're on the prednisone, it probably wouldn't help the inflammation the way it would if you didn't have on-going exposure to the thing causing the inflammation. There seem to be two approaches to using prednisone for Pans. Dr K seems to favor a short burst. When you take prednisone for 10 days or less, you can just stop at the end. If you see improvement in symptoms, it's enough evidence for him to suggest he's on the right track and he seems to then either recommend continued use of abx and/or IVIG. (at least from what I can tell from people here - I've met him but never used him as our dr). The second approach (used by Dr B, Dr L and I think Dr T) uses prednisone for 3-4 weeks. The goal here is to end the inflammation and hopefully help the symptoms resolve - at least until another trigger/episode. When you use prednisone for this length of time, your body starts to make less of its own. So when you stop taking it, you can't stop cold turkey. You need to taper down the dose so your body gets the signal to resume making enough of its own. This taper approach can be a miracle. If you give a regular kid prednisone for 3 weeks, he'd likely be off the walls with hyperness and anger/edginess. But for Pans kids, it calms them down and brings them back to an awesome place. But...this is assuming the infection that triggered the episode is gone. A few kids here have taken prednisone but still had some sort of infection and in those cases, prednisone didn't help, or only helped for a short time, and in at least one case i can remember from a few years ago, it made the child worse. So if you don't like what you see in terms of response, listen to what your gut tells you. But it doesn't mean your child doesn't have Pans (he may or may not). It means there's more detective work to do. As for the 14 day post-burst asessment, I think that's a dr K thing. Mabe some of his pateints can chime in on his thinking. When my son was a toddler (pre-Pans), he was supposed to take 5 days of prednisone for croup and it made him bounce off the walls with hyperness. I stopped it after 3 days because he was so unmanageable. When he developed Pandas, it was a totally opposite reaction. I saw improvement after the first day - like a huge sigh of relief from his brain. He was amazingly calm and mentally sharp. But we were only able to sustain remission for 2 months (and this ended up being a clue he had chronic lyme). Other parents haven't seen improvements as quickly but did see improvements toward the end of the taper or afterward. Everyone is different.

Dr K's explanation of why IVIG works is only his theory. There is no research to explain why it helps - not just for Pandas but for other autoimmune conditions. He may be right - he's not the only Pandas doc to use the "re-boot" theory. But as I understand it, the current NIMH study was designed only to evaluate efficacy (and maybe help get insurance coverage), not to explore how/why it works. I do hope the prednisone burst helps your son and that perhaps IVIG is something that could put him in that category of patients who get well enough to not return. But using the term "cure" is a personal pet peeve of mine. My first Pandas doc used it just before my son had plasmaphersis and I was crushed when it didn't "cure" him. I personally don't talk in terms of cure but rather long remissions. But that comes from my bias - I belong to a forum where kids are sicker longer and struggle with less than vanilla cases of Pandas. So my experiences reinforce my ideas that Pans/Pandas isn't cured but rather you can do things to reduce your risk of recurrances. Dr K on the other hand, has a bias on the other end of the spectrum. A large number of his patients probably do get well enough to never return, may not need more than one IVIG. But others may not return because they needed a different protocol than Dr K uses. He doesn't investigate chronic infections. If you don't have one, then this isn't a big deal. But if you do have one, and he doesn't test for it, then you may not see progress and you instead turn to a different doctor. But as far as he can see, he treats them, they don't come back, so his protocol must have cured them. So each of us has a bias based on what we see every day. The truth about a "cure" and success rates and the role of chronic infections probably lies somewhere along a spectrum. And in the end, the only truth that matters is what ends up being true for your son. As for anger, my son had a lot of that. Motrin helped and I eventually found that some of his methylation issues made him what's called an overmethylator. So taking a B complex vitamin higher in niacinamide has helped as well. We also did a lot of cognitive behavior therapy (CBT) and that gave us both a life-long tool to help us communicate and regulate.

There doesn't seem to be one "best" combo for lyme. It's common to use a + b for a few months and then b+c for a few months and then maybe b+e+f. A general rule of thumb is to use at least one extracellular abx (like augmentin) with one intracellular abx (like azith). My son did lyme treatment for 2.5 yrs and zith was always one of the abx in the combo. He started with zith + augmentin. Tho it did nothing for him until we also added bactrim (Septra), it does help many. So it's quite possible you've been seeing herxing (and/or some withdrawal symptoms from prozac). I think once you hit on an effective combo, you can hope to see improvement - in that you start to think you're on the right path - in the first few months. But it's a lot of ups and downs. When my son started his trio (zith+augmentin+bactrim), I saw improvements in 3 weeks. And he climbed upward for about 2 months. Then he stalled and we had to change things up and he herxed badly, sliding back downward in terms of OCD and cognitive gains. Then he'd climb back up a little further. It's a lot of two steps forward, one back. When herxes started, I always doubted myself - did we just make an effective change that was killing more stuff? Or did we just remove something that was really helping and now with that magic thing gone, was the lyme running rampant? Herxes are a lot like flares and both bring lots of inflammation. So it's always hard to see things for what they are until it's past. It was only after the first year that I could look back and see that his worst days were still better than what they'd been before we started lyme treatment. And sometimes you uncover other things you weren't expecting, like parasites or metals or proluria or mold or other infections or whatever...it's exhausting. But it eventually gets better. I've heard some say you may make less antibodies if you've had chronic lyme. I think the theory is that after a time, lyme learns to hide from the immune system (becoming intracellular, hiding in biofilms or going into cyst form due to prolonged abx use) and also that it may start to share/mix DNA with the host and seem less alien. But I don't think there's any research to prove it one way or the other. It's also hard to say what effect multiple IVIGs may have had, how donor antibodies could influence what the body does or doesn't see in regards to a chronic infection. IDK. What I do know is that if he was one band away from CDC positive and his treatments haven't addressed lyme, I'd be suspicious that it's still there. As for detox, you can search the archives (or google "detox + lyme + acn") and find some long posts in the '10-'11 era when the lyme forum was first launched. It was a big topic at the time. I used to post long lists of things that are supposed to help - milk thistle, charcoal, bentonite clay, chlorella, NAC, alpha lipoic acid, epsom salt baths - and they do help some people. But since my methylation kick, I've learned that some people can't handle these things because of genetic mutations (mostly CBS/sulfate issues). If you do use things like charcoal or clay, you need to take it away from other supplements, as they act like little sponges and soak up everything, not just toxins. They can also alter electrolyte balance, so some practioners recommend using only one capulse/day or once/week. Motrin also works wonders - not for detox but to reduce inflammation. Also - remember to use lots of probiotics. This is another individual thing - some do well on one thing and others don't. But fwiw, my son needs brands that are high in bifido strains. Most brands are high in lactobacillus strains. So you may want to rotate or try different brands/doses until you find something that seems to work well. Butyrate also inhibits yeast and helps strengthen the BBB but it's basically fermented food in a capsule, so not good for those who can't handle sulfur foods like sauerkraut, gassy veggies...and contrary to what my son claims, it does not make your farts smell like petunias. One final thought - anger/rages were always a big herx symptom for my son. In addition to motrin, I found that a little (50mg) niacin (vitamin B3) helps him calm down. If things get hairy on you one day, pick up some niacin from any healthfood store or maybe even CVS (most only carry large doses like 500mg). Open the capsule and sprinkle a little into any emptry gel cap or into some food. You may see a calming effect within the hour. It may not work - not everyone reacts the same way. But it's helped me more than once. Fingers crossed that S&S is wrong about the ramifications of the legal woes, but if not, my LLMD (Dr M) is 30 min north of Dr J and I can highly recommend him. But he does have a wait list for new patients. So another thing to keep in mind.

Our LLMD ordered my kids' MTHFR test (blood test thru regular local lab, paid for by insurance). I then went on to order 23andMe for my whole family (spit tests) - $99 for first kit, $79 for additional kits ordered at same time, but not submitted to insurance - paid out of pocket. No doctor's signature required. But do be educated about privacy and insurance implications of any genetic testing regardless of whether you pay or run it thru insurance. Here are some articles that give some background: http://autismnti.com/images/Website-_Yasko_Education.pdf http://www.heartfixer.com/AMRI-Nutrigenomics.htm http://www.easytolovebut.com/?p=2782 There are some support sites - mthfr,net, mthfrsupport.com and a facebook page mthfrsupport that can help you wade thru. But like Nicklemama says, few doctors really understand how to customize methylation advice based on individual results. It's in its infancy, so we share links and bounce ideas off each other but most of us are doing educated trial and error with supplements to figure out what works for our specific family members. I hope your visit went well. I'm sure your head is swimming. You may want to start a symptom chart to track how various treatments help or don't help. I have a sample I can send you if you want. Just send me a PM (click on my user name and hit "send me a message" and send me your email address. I can't send attachments in the forum's messaging system.).

I'm glad to hear Dr T ordered so many labs. The band 41 you see on the lyme test isn't unique to lyme. It means your son was exposed to and developed antibodies against some bacteria that has a flagella - a tail used for motility. Lyme spirochettes have a flagella, but so does H Pylori, syphillis and others. I don't want to side track your post onto a lyme discussion but I do recommend reading the articles in this thread http://www.latitudes.org/forums/index.php?showtopic=10804 because the test Dr T orders is not a good way to rule lyme in or out. My son was tested by this test (different Pandas doctor) and was completely negative. Six months later, after a bad one-time IVIG experience, we re-tested for lyme using Igenex lab and my son had 5 bands light up - 4 that were never tested using the standard lyme western blot from Quest. Not dwelling on lyme - just don't want you to dismiss it entirely. By all means, pursue/treat any other infections that turn up. But if you can't hold remission, keep lyme in mind. My son had positive strep a number of times and he definitely had/has Pandas, but lyme was underneath it all, keeping him from getting permanently well. In theory, your pedi is right - Pandas symptoms do resolve - but only if you eradicate the triggering infection. So if you have mycoplasma or lyme or some other chronic infection, ten days of abx isn't going to kill the infection and it will remain, keeping the pot stirred indefinitely until the body - usually with some major help from longer term antibiotics and maybe other medical interventions - clears the invader. To dismiss Pandas casually, as if it will resolve like a common cold, is naive. If your son's trigger is viral, there are a number of anti-virals you can use - some prescritption, some herbal, some OTC supplements like l-lysine. The recognition that viral triggers and bacterial triggers beyond strep can bring on an episode is the reason the disease has been re-named PANS, taking the focus off of strep as the sole culprit. Your question on how you know if something is working or if things are just resolving on their own - for our kids, many of whom have under-performing immune systems - they don't just resolve on their own. They resolve once you get rid of the infection. So when you see improvements, it's generally the treatment that's working, helping the body recover. You should also be aware of the herxheimer reaction. Sometimes, if the bacteria you're fighting releases toxins as it dies - e.g. with strains of strep that produce scarlett fever, yeast, lyme et al - the die off can make it seem that your child is getting worse, not better. People here generalize the term 'herx' to discuss any general "worse before better" reaction. Sometimes getting worse doesn't mean you're on the wrong path. It can mean you're killing things faster than the body can handle, de-tox wise. So slowing down your rate of attack or supporting with supplements can help lessen the reaction. Using anti-inflammatories is also extremely helpful and regular dosing of ibuprofen or a period of prednisone can sometimes be amazing. (for whatever reason, ibuprofen is remarkably more effective than any other NSAID for our kids). Regarding the methylation issue - my son underwent a number of Pandas treatments - long term abx, T&A, prednisone tapers, plasmapheresis, IVIG, lyme treatment using combintations of abx - and he would get better but not completely better. So each time, we had to dig deeper. After his lyme diagnosis, we worked with an LLMD (lyme literate MD) who looked at vitamin deficiencies. We found a genetically caused zinc/B6 deficiency and when we started supplementing with zinc/B6 it was like someone turned on a light switch. My son made huge gains. We then went on to look at other genetic issues - such as the ability to use Vitamin D effectively, the ability to degrade neurotransmitters at the proper rate, etc. My daughter, who could've easily gotten a bipolar dx from any pyschiatrist, had a genetic anomaly on a gene known as MTHFR which reduced her ability to use folate (vitamin B9) which in turn gets turned into SAMe, serotonin and dopamine. When we started supplementing with a special form of folate (methylfolate) in the right dose for her, her bipolar moods went away. So we then went on to test the whole family using a genetic lab called 23andMe and I've been able to tailor supplements that have helped my kids regulate their moods in a way that's amazed those who knew them in the bad old days. It's possible that pre-existing methylation problems pre-disposed them to neuropsych symptoms when the body became overwhelmed with infection and this is what weakened the blood-brain barrier and enabled the autoimmune Pand response. So by working around their genetic hurdles and supportuing their guts with the right balance of probiotics and diet, I'm trying to fortify the fort and make relapse less likely and less damaging if it does happen. Sorry if I've tossed too much out at one time. Not trying to throw the kitchen sink at you. Sometimes, once you kill the infection, kids return to baseline and can maintain a good place. My kids had other things that kept them from being like those kids who bounced back quickly from an episode. So keep focused on the infection for now. But don't get discouraged if your son isn't an immediate success story. Know that even if you have to dig deeper and become an expert on things you never dreamt you'd have to know, you can find answers and get your son well. oh - re: the behavioral optometrist - my kids both have convergence insufficiency - a type of "lazy eye" that gave them reading, coordination and academic problems. It isn't directly related to their Pandas issues. They wear bifocals and do eye exercises to reduce the CI. I mentioned it in my first post because the optometrist has worked with my daughter for the past year but has only sporadically seen my son, as we couldn't afford vision therapy for both at the same time. So she was really struck by the contrast between the boy she met last summer and the boy she saw yesterday. The story was meant to highlight the dramatic gains my son has achieved in the past year.

I'm not posting as often anymore, as I'm rediscovering "normal". But there was a time I lived on this forum and couldn't have ever made it through without the support and insights of the people here. My son also got sick at age 6. In a few weeks, he turns 11 and is in a better place than I have ever known. Even better than pre-Pandas/lyme because he likely had issues when he was sick as a toddler but I'd never heard of Pandas back then, so it was written off as behavioral. Today, he had his annual eye exam with our behavioral optometrist. She was blown away by the kid in her office today. He has grown into a funny, engaging, warm young man - a far cry from the huddled ball in a psychotic panic under our coffee table in 2008. It was a long, hard, expensive road. But kids do get better. You will get your son back. Do understand it won't be like flipping a light switch, he won't recover as quickly and dramatically as he fell ill. But you can - and will - get him back. You ask about why all the blood work and as the other posts have said, it's to try to zero in on your son's trigger(s). Antibiotics - often 30+ days or even years of treatment or prophylactic doses - are the first line of treatment. But abx need to be selected based on the trigger. You don't say where you live, but the biggie infections many here deal with are: strep (including strep and/or staph bacteria in the sinuses, adenoids, tonsils), mycoplasma (these papers may be of interest http://www.rain-tree.com/myco.htm#.UgQej6yC7IU and http://jac.oxfordjournals.org/content/40/5/622.full.pdf+html and http://www.publichealthalert.org/pdf/2009/2009_07.pdf lyme disease (see the discussions at the top of the forum under "pinned threads" for articles on the shortcomings of most lyme tests) bartonella yeast (yeast die off toxins often trigger neuropsych behaviors and with many here using long term abx, yeast becomes an issue) How to treat depends on what you're fighting. Dr K is a big advocate of IVIG and it helps many. But it doesn't help all and it's effectiveness is highly individual. If you don't eradicate the infection before doing IVIG, remission seems more elusive. So knowing thy enemy is important. If you live in an area where lyme is a known problem, don't blow it off by saying you've never seen a tick. Dr K is not one to pursue lyme testing and I'm not trying to suggest everyone has lyme. But it won't be part of his focus and if other infections don't seem likely, do put this on a sticky note to come back to if need be. Also be sure to use the archive feature whenever you want to investigate a new idea - there's a decade of wisdom here. If the search feature is too cumbersome, go to google or your favorite search engine and type the topic + "acn" or "latitudes" and you'll often get hits from old discussions. In addition, some kids, especially those who might've been "quirky" pre-illness, have methylation problems. Genetic anomalies that prevent the methylation and transsulfuration and krebs cycles from working at 100%. So after, or in addition to, fighting infection, some of us have seen lasting improvements from addressing vitamin/mineral deficiencies and imbalances. Some swear by homeopathy and some haven't seen success with it. You find what works for you and eventually you start to find your way again. There's no one path back to wellness. But do know that most of us here have been, or still are, in your shoes. We totally get the rages, the irrational, paralyzing fears, the cognitive loss, the personality changes, the sense of having your world turned upside down, the stress on our marriages and the price paid by siblings. But kids do get better and your will too. Welcome to the forum.

:) :) :) You rock, warrior mom - and so does your DD!

In my experience, there's no easy answer to your question. Different symptoms subside at different rates for different people. For those with tics, they seem to linger longer than other symptoms but you can always find exceptions. The key is to find the right antibiotic(s) for the specific infectious trigger your DD. No one can say "zithromycin is best' or "augmentin is best" - they're both "best" if they're used for the infection that's vulnerable to that particular antibiotic. Sometimes it's trial and error. Some kids do better on a combo of antibiotics. In general (again, there are no absolutes), if you eradicate the infection, you should see things calm down considerably over a period of weeks (maybe 3-8?). If things don't resolve significantly, you need to either try new abx or wonder if you've completely eradicated the infection. In that case, you consider a tonsillectomy or test for chronic infections like mycoplasma or lyme or bartonella or yeast. My son was once a huge ticcer. Could not hold a glass of milk without sending the milk shooting across the room. He had to revert to sippy cups at the age of 7. He had both strep-triggered Pandas and lyme-triggered PANS. He is generally tic-free now but they resurface when he has some sort of infection and is having trouble clearing the toxins that get released when bacteria die. Strep, lyme and yeast release these toxins and he has trouble de-toxifying and handling the inflammation that occurs during the die-off. When he clears the toxins and the inflammation subsides, the tics go away. they are his coal mine canary. I know you'd like concrete answers on what to expect. I think the not knowing is one of the hardest parts of coming to terms with this disease. But I have a number of old-timer friends on this forum and if you sat us around a table, we'd all have a different tale to tell on how we got our kids back to baseline. Few travel the exact same path. This forum is a great resource and a great support. But you need to view all of the advice as a buffet table, not a "how to" script. We can all offer ideas and experiences, and some will really help your child. But other things wont. Some kids do great on one abx or supplement, other kids get worse n the very same thing. Some people connect with one doctor, others have bad experiences with the very same doctor. Your story will be unique even tho you'll share some things with many of our kids. If it's any consolation, my son went a year without proper medical support before we found Dr L. With her help, he got significantly better. But not 100%. We then found lyme and with the help of an LLMD (lyme literate MD), and yrs of treatment, he is now off antibiotics and has almost achieved full remission. (he is fighting some sort of gut imbalance that's triggering some mild OCD but I'm confident we'll nix it in time- he's about 98% at the moment). He remains vulnerable to strep and PANS, but you can get them back to a good place where they can thrive. A delay in diagnosis or treatment is not a death sentence. It just takes a lot of time and digging for answers that are unique to your child.

Sorry - I created the confusion. My son's VDR Taq status is Normal, no anomalies. I went back and edited my first post to make it more clear. That's what happens when you go away on vacation and start posting again before your brain switches back on. (it's my DD who is VDR Taq +/- and needs a D supplement - I knew it was one of them but got them switched in my head). Because my son is normal VDR Taq, I have to be careful when adding Vitamin D, as he could get too high in dopamine. If your son is VDR Taq +/+, then he could and probably should do well on a Vit D Supplement. You were reading it all correctly. What I wrote originally was incorrect. Thanks for pointing it out!

Lisa, In addition to the possibility of the SSRI withdrawal and need for time to let things re-balance, I'll add my son's recent expierences just as something to consider before your Dr J phone consult. DS has been treated for lyme/Pandas for 5 years. On anywhere from 1-4 abx at a time. The only time he previously had any yeast issue was post-IVIG and I added Sacc Boulardis to his regime. He cannot tolerate Sacc B and it caused a lot of anger, impulsivensss and lashing out. (Sacc B is a "good" yeast but effects DS the way a yeast infection would). But this february, even while on 2 abx and with no infection to explain it, DS's OCD returned after almost a year. We added a 3rd abx - no change. So I stopped all abx (since he was about done with lyme txt anyway) - no change. We re-introduced copper, which I'd gotten lazy about, to balance the extra zinc he takes for a deficiency. That helped some. Then we tried artimisinin, which helped a lot - but then not so much. A blood test for candida antibodies came back negative so we did a Metamatrix stool test which showed high yeast strains and some other high fungus and bacterias. The results tell you which treatments should be effective against the strains found. Artemsinin was said to be ineffective. But butyrate was listed as being very effective. So DS has been on butyrate for about 10 days. Hard to guage the changes, as we just got back from a 10 day/1600 mile road trip and diet/behavior is too variable for any kid under the circumstances. So based on the past 6 months, I don't think it's infection but rather gut bacteria/funguses that are causing DS's OCD. Finding the right thing to get it under control may take a bit of trial and some time, but I think it's the culprit. So if you haven't done a Metamatrix stool test, it might be worth discussing with Dr J. With Ian's history of aggressive treatments, his gut may need some help regaining balance. I hope Dr J's able to give you some guidance and you can move forward. I know you're exhausted. Hang in there. We all find our answers eventually.

He takes SourceNaturals Coenzymate B Complex (orange flavored). It's supposed to be sublingual, but the taste is nasty. So I crush it and put it into an empty gel capsule. Two capsules contain 39mg niacin (multiple forms). In the summer, I've been giving him one capsule (so 20mg) but will increase to 2 capsules in the winter. Because it's supposed to be a sublingual and I'm giving it as a capsule, I can't say how much gets absorbed. But this particular blend uses adenoB12, I'm less worried about the effects of stomach acid on the b12. I'm sure it's less effective this way, but it's the only B complex that has a blend that seems well suited for his needs, so the capsule is better than nothing. Many people on Amazon complain of the taste and I can't blame him for not wanting to suck on it. It is pretty objectionable. If, when I add D3 back in once we start indoor hibernation, if he starts to anger quickly, I may add some more niacinamide. Since I crush the sublingual tablets into a powder and then fill my own capsules, it'll be easy to open a 500mg niacinamide capsule (or several) into the mix and increase that one component. It'll be a trial and error unfortunatley, but the kids are used to it from me.

A few people asked for the link to this company that will formulate a supplement to your specific needs. http://www.vitaganic.com/ I've not used this company, so can't vouch for it. But someone on the Pandas Parents FB page uses them. As far as I can tell, there's a base fee built into the cost of each capsule. So even if you order a capsule that has only one ingredient, it may still be more than $1/day due to the base fee. Adding many ingredients has only a small to medium impact on the overall cost (depending on how expensive that particular ingredient is - B vitamins tend to be cheap, things like CoQ10 tend to be expensive). They do not offer methylfolate, so you'd need to supplement that separately. If I only had one child who needed a custom blend, this might be an attractive option - only taking 4-6 capsules instead of a dozen separate supplements. But there are 4 of us who need different blends, so it's far cheaper to take separate pills in our case. So I haven't used them and can't comment on their quality, service etc. There may be other companies that are cheaper - I haven't pursued the research on it. But pass it along for those who may find this an affordable option.

Vitamin D plays many roles but four important ones are 1. to support the immune system; 2. to support bone strength/growth; 3. to serve as a hormone that encourages sleep and 4. to act as a dopamine precursor. For those who are high in dopamine, adding vitamin d can trigger or exacerbate tics, as dopamine plays a role in motor movement/control (e.g. Parkinson's is a dopamine dysregulation). Some people have a genetic abnormality in a gene called VDR Taq. From Heartfixer: Vitamin D stimulates the enzymes that generate dopamine, a good reason to keep your Vitamin D level up, as we need dopamine to defend against microbes and metals, and to keep our mood up. While we utilize SAMe (and indirectly other methyl group donors) to degrade dopamine, we also utilize methyl donors to generate dopamine. Individuals with a normal Vitamin D receptor, those who are VDR Taq (-/-), make plenty of dopamine. They tend not to need or to tolerate methyl groups or dopamine precursor substances (my comment - like a vitamin D supplement). Individuals for VDR Taq defect have lower Vitamin D levels, make less dopamine, and will need and tolerate dopamine precursor substances and methyl donors. http://www.heartfixer.com/AMRI-Nutrigenomics.htm#VDR%20Taq:%20%20Vitamin%20D%20Receptor%20Taq%20Abnormality So one reason someone may not be able to tolerate a D supplement (always use D-3) is that they may have a VDR Taq abnormality. My son has this and has other genetic abnormalities that make him generally high in dopamine. Yet we live in the north and need to supplement D in the winter months to help him keep his immune system strong. So when we add D3 for the winter, I'll increase the B Complex he uses that's high in niacinamide that sucks up extra methyl groups. Hopefully, this will help him tolerate D3 better. FWIW, niacinamide also helps mellow him out and improves his moods, ability to handle stress and reduces his tendency to get angry when frustrated. This is where his 23andMe/Genetic genie report has helped a lot, since I have a better understanding of which supplements work with his body and which work against him.

Mayzoo - we don't use a multivitamin because I can't find one that has the doses we need - one too high in this, one uses too little of that.... so we supplement individual vitamins. My son uses a B complex from Source Naturals that's high in niacinamide but that's good for him because he's an overmethylator. But DD can't use it. I just found one B complex that has no folic, folinic, folate - no B9 whatsoever. From Nature Made I think but don't have it in front of me. I also have a link to a company that will custom mix a multi accoding to your own wishes - a little expensive for my family of 4 but probably good if you only do it for one person. I can send you the link next week when I have access to my laptop again. Susan - will touch base next week as well.

Still away from internet most of this week but to quickly answer your CBS question - I too treated MTHFR first and saw good results. Wasn't going to stop just because it was time to start addressing CBS. So we stuck to what we were doing. I considered the ammonia strips but 1. wasn't eager to have DD pee on my hand and 2. have reqad mixed reviews on whether they're an accurate guide. So haven't used them, tho haven't ruled them out in the future. For diet, we haven't made major changes. I've stopped insisting DD eat a medium sized portion of animal protein at dinners and just let her eat the quantity she wants. But I haven't restricted cheeses or ice cream etc. We're all just too tired after so many years. Instead, I;ve added molybdenum and increase it when we've had a lot of protein that day. I used Yucca for DD briefly but saw it was an estrogenic so I stopped it. DD is also suffering from an adrenal problem so that's taken priority. My hubby is also CBS+/- so I put him on butyrate for 2 weeks and it's changing his plumbing too much so he's taking a holiday and I'll ask him to take it a few times a week once things have stabilized. Supposedly, Yasko recently changed her stance on CBS being the cause of high ammonia. I haven't followed it closely but have come to see Yasko as a guide but not the final authority. She's by far the most comprehensive voice on thise but it's still all evolving. I also learned this week that her Methylmate B drops, which help my DD a lot, contain s-methlyfolate, not l-methylfolate. This makes absolutely no sense to me. Likewise, Lynch's B-complex has a high amount of niacin, which isn't helpful for my under-methylator DD. So just because their gurus doesn't mean you can buy their products without having to scrutinize them. I think you need to read what they suggest, share ideas with others in the same boat and implement what's practical and helpful.

JAG - don't have much access to internet this week. Will be curious to hear Dr O's thoughts but some people have high titers that are "normal" for them. Doesn't mean there's strep. They just have higher than average number of strep antibodies in their systems. Maybe that's your DDs norm? Having interesting experiences with the effects of yeast on behaviors - will share more when I get reliable internet. But look up an old post of mine on butyrate (maybe april of this year?). Butyrate can help heal the gut and reduce leaky gut. Could be worth asking Dr O about it as a prophylactic anti-yeast supplement. As close as we are to 100% right now, yeast seems to be one last hurdle.