LNN

It sounds like your son is realizing he is different from others in some ways and is groping for a name for what "it" is. We all do this. Develop a series of symptoms and we all jump on the internet searching for a diagnosis, because that leads to a treatment path; a road to potential relief or at least a way to cope. Our kids are no different. There's no right or wrong answer about how much to tell your son. Since his first major flair, my son (now 10 but 6 at the time) has known about Pandas and then lyme. He knows the name of each pill and why he takes it. For him, information takes away fear because he feels less confused about what's happening. It's also been necessary because he's undergone some serious procedures like Pex and IVIG. So you kind of need to explain at least a little bit about why you need to spend 4 days in the ICU hooked up to a dialysis machine. My daughter, 7, doesn't want to know as much. Too much info confuses her. She needs things summed up quickly, neatly and just wants to know that she'll be ok. The way I've decided what to tell them is to bring the subject up and let them ask questions. If one answer leads to more questions, I tell them more. If an answer seems to satisfy them and they're ready to move on to another topic, I drop it. My son has probed and questioned for hours. My daughter is content with far less discussion. It sounds like your son wants more information and it could be a relief to him to know that what he has is treatable. It may help him to know there are others who have what he has and they lead happy, productive lives, that they recover. When my son was in the ICU for Pex, it made a lasting impression on him to meet another Pandas kid there. The next year, he came to the IOCDF conference with me and met a few other Pandas kids. He can now spot kids in his classroom who have anxiety, tics or adhd. It makes him feel better to know he's not "the only one" and to know nearly every one of his friends struggles with "something" (one has anxiety, one needs hearing aids, one has GI issues requiring periodic endoscopes...). There's no right or wrong answer but it sounds like it might help your son to know that his condition has a name and that there are other kids just like him. JMHO.

For immediate relief, try motrin. Even if it's yeast causing the silliness, motrin calms my kids down. For longer term, try rotating probiotics and/or using something that has a blend of strains. We use Truflora twice a week for yeast and Theralac 5 days/week. Many here like Sacc. Boulardis, which unlike other probiotics, can be taken at the same time as antibiotics. My son doesn't do well on Sacc B. so we avoid it. But it's a great option for many. As for dose, there's no "set" dose for kids vs. adults. Remember that the label is for adults who aren't assaulting their guts with antibiotics. So you may need to go higher. Just build up over time, increasing dose every few days rather than all at once, or you could get gas/bloating. More is not always better. And probiotics aren't cheap. So you need to find your own sweet spot. Probiotics last longer if they're refrigerated. I prefer to buy mine from our doctor or health food store where they're refrigerated. It can be a bit more expensive but no point in spending a lot of money on stuff that's already dead. We also use garlic pills to fight yeast. One 1000mg pill at dinnertime (make sure it says "odorless" on the label). Even with a daily probiotic regimen, my DD would occasionally have a yeast issue. Garlic + probiotics now keep that at bay.

Vitamins D and C and zinc are all important to the immune system. Dr Amy Yasko has some videos where she discusses lecithin to strengthen the BBB. But I don't know if there's research to support that or not.

As you've said, old habit die hard. I'm hoping he was ok this morning. Look at the bright side - I can't imagine my DS ever worrying about whether he did enough school work. His is more of "Did I do enough to get by?" approach. So at least your DSs bad habit is a productive one, even if it does drive you nuts! I do like E's approach - remind him he'll never be able to do enough and he's doomed to fail every class. Maybe that will put a smile back on his face

Before turning to methylB12, I would test your MTHFR status, your homocycetine levels, your B12 and folate levels and your cysteine levels. If you have an MTHFR mutation, methylB12 alone won't do much. You'd also need methylfolate as a cofactor. If you don't have an MTHFR mutation, cobalamin (regular B12) could do you as much good as methylcobalmin for far less money. If you have an MTHFR mutation and you measure high on folate, B12 and/or homocysteine, you'll know you have a methylation block and stuff is going in but not being converted/methylated into the active forms. I would also check cysteine levels. If your cycsteine levels were low, you'd know your glutathione levels and sulfite levels were also low and you likely had a detox issue. It's estimated that only 1% of sublingual B12 is absorbed. Anything that doesn't get absorbed by the tongue and gets swallowed probably won't survive the gut. That's why shots are generally much more effective. If shots aren't an option to you, then sublingual may still be worth it. My DH and DD have both used it and both said they felt a little different from it. So even 1% may help. But I'd have the blood work run first so you have a better idea of what you do or don't need. It also depends on what you're trying to gain from it. Are you lacking energy or is some other symptom driving your search?

Timely post. My neighbor's son has nephropathy, triggered by a strep infection several years ago. His is pretty serious and he's now homeschooled because he's on some serious immuno-suppressive drugs and any illness can have serious consequences. I believe the mom belongs to a an online forum. If you want me to find the name of the group or try to connect the two of you, let me know.

We had some refusal issues with bactrim, which dissolves very quickly and has a nasty taste. If it didn't get swallowed fast enough, out it came onto the kitchen table, a gross pile of mush and water. We'd frantically mash it into an oreo cookie hoping to get it down before the bus came up the street. I agree with S&S - we see issues crop up in cycles even when nothing has changed with meds. It could be some issues related to stirring things up with mold, could be herxing. Welcome to the world of "Just when I thought I had this figured out, now I need to go learn about more of this cr*p?" But it's great that you've seen so many other improvements! That awakening you're seeing? Write it down! Burn it into your memory! Because it shows you what he's capable of. Some of this may very well disappear again as you go thru cycles of treatment. But you know what's possible. Lyme & co. is a long series of 2 steps forward, 1 back. Sometimes, for many weeks, it's actually 10 steps backward. It's like remodeling the house - you make a huge mess of things during the process of making lasting improvements. DeeDee probably has a few good tricks for getting meds into a kid. Her DD struggled with this for a long time.

There are many strains of mycoplasma, not just the one that's commonly tested. here's a good overview: http://www.morgellons-uk.net/?p=467 Also, doxycycline isn't good for kids whose adult teeth haven't all emerged. Doxy can permanently stain developing teeth. Bloodwork would be a good idea in any event. Not just for myco, but for ASo/Anti D-Nase B, maybe lyme if you're open to that, also check immune complexes. C3d can show that the immune system is activated (tho it doesn't tell you what kind of infection is causing it, but does indicate an active infection of some sort); C3a and C4a are indicators of chronic lyme and/or mold. Don't underestimate the role mold can play in neuropsych behaviors. Finally, even with infection as a cause, ERP for OCD is priceless. If you aren't doing ERP, then even an SSRI, IMHO, isn't going to fully eradicate it. There are many parents here who are more experienced than I am, but if you post about some of the more problematic OCD issues, maybe someone can offer some ideas to help fight them.

Me too! I browsed thru some of Masterjohn's blogs and contacted him to see if he knows anyone at UConn who shares his approach to health but looks at neurotransmitters instead of cholesterol. I need a Masterjohn for the brain

Great link - thanks! You guys rock, as always! Anyone else with experiences, pro or con?

One of the Pandas specialists is in Chicago. He's actually been treating Pandas longer than most. Here's his website: http://www.webpediatrics.com/ As I understand it, his preferred protocol is to treat initially with abx but feels IVIG is often needed. He also does not often explore other triggers beyond strep, which for some parents has been an important piece of the puzzle. But in the world of conventional medicine where finding a supportive doctor is extremely difficult, he's been a life saver for many. Each Pandas doc seems to have a different protocol, so you as a parent need to decide what you are and aren't comfortable with. It's not always a matter of going to the closest one. A "standard of care" is still evolving. Would you prefer long term abx or moving quickly to IVIG? Do you want to focus on strep only or cast a wide net of testing? Do you want to work with someone who is well within conventional medicine or work with someone who takes an integrative, albeit less conventional approach? It may be too early for you to answer these questions but it's something to keep in mind. Many parents end up seeing more than one doctor as they work with one and then decide it's time to try a different approach. There's no single answer. I've not worked directly with Dr K so perhaps others here who have can offer you insight either on this thread or in a private message.

Ok, you will all think I've gone overboard on supplements. I promise I'm not scouring the internet looking for yet more pills to give my kids. Someone mentioned using phosphatidylcholine and seeing improved executive function. So I got curious and found this: http://lpi.oregonstate.edu/infocenter/othernuts/choline/ excerpts (bolding mine): Choline is a precursor for acetylcholine, an important neurotransmitter involved in muscle control, memory, and many other functions. Without adequate phosphatidylcholine, fat and cholesterol accumulate in the liver Choline may be oxidized in the body to form a metabolite called betaine. Betaine is a source of methyl (CH3) groups required for methylation reactions. Choline is required to form the phosphatidylcholine portion of very low density lipoprotein (VLDL) particles. VLDL particles transport fat from the liver to the tissues (see Function). When the supply of choline is inadequate, VLDL particles cannot be synthesized and fat accumulates in the liver, ultimately resulting in liver damage. Because low density lipoprotein (LDL) particles are formed from VLDL particles, choline-deficient individuals also have reduced blood levels of LDL cholesterol (6). Healthy male volunteers with adequate folate and vitamin B12 nutrition developed elevated blood levels of a liver enzyme called alanine aminotransferase (ALT) when fed a choline-deficient diet. Elevated ALT activity is a sign of liver damage. ..These signs of organ dysfunction resolved when choline was replaced in the diet. Choline, when oxidized in the body to form betaine, provides a methyl group for the conversion of homocysteine to methionine by the enzyme, betaine-homocysteine methyltransferase (BHMT). See diagram. Despite its relevance, the relationship of betaine and choline to homocysteine metabolism has been only lightly investigated in humans. (my note - this seems to be important to those with MTHFR A1298 mutations but not sure exactly how) It's worth reading the whole article, which does say most people get adequate intakes. But past discussions of kids with elevated ALT and cholesterol made this article catch my attention.(that plus it talks about methylation, so you know I had to read it). Does anyone have experiences with choline or phosphatidylcholine or lecithin (which Yasko believes plays a role in a healthy BBB)?

This summer, DS and I read a book about a kid in the 50s who loses his hand in an accident and his dream of playing baseball is dashed. His mom takes the stance almost immediately of "deal with it, figure out how to tie your own shoes, figure out how to do your chores." He eventually does just that (and teaches himself to play baseball one handed). It hit me like a ton of bricks just how much I've come to coddle my son to compensate for the disabilities PANS brings. He's 9 and I was still cutting his meat as I dished out dinner. I suddenly realized how ridiculous this was. I was still helping him with a lot of things that require fine motor skills (because we all know that the tantrums that come with frustration are he** to deal with). So I stopped doing as much and he quietly rose to the challenge (in most cases). It's so understandable how we become over-protective of our kids. We fight tooth and nail for treatment, for school accommodations, for every facet of family life. Over time, it becomes reflex and we forget that sometimes, in order for them to be normal, we need to let them risk failure and own their success - without us. So this is my girlfriend nudge to let him go. It sounds like he's in a really supportive environment. I know you're terrified that if he stumbles, the whole school refusal nightmare will come crashing back. It's like being afraid to love again after the first time you have your heart broken. But you eventually have to learn to trust others (teachers) even tho the last relationship broke your trust. The school has to be his territory, a place he feels safe without the idea that you're there. You need to send him the message that you know this school understands and will help him succeed, that you have confidence in his abilities. If you hover, you risk sending the message that you don't have confidence in him. Really, really hard?? Absolutely!! Important? I think so. (I think they sell Gaba in jumbo bottles). Trust the school to push him at a pace they think is reasonable. Will there be bumps? Probably. But let them be bumps that get overcome without your immediate intervention, at least for awhile. As for the asperger's - I think the only thing you want them to understand is that unlike asperger's, PANS is episodic. But if it helps frame the way your DS responds to the world, I can see some benefits. Maybe let them form their own opinions until Columbus Day. Then come back to this post and see how you feel.

You might find some good answers to some of this on www.mthfr.net. He's a doctor - I'm so, so not! Yasko talks about seeing a very brief honeymoon and then something akin to a herx response. But she's vague about time frames. Rich Van Konyenberry also writes a lot about methylation and chronic fatigue. You can google his stuff and see if time frames are discussed. I know he did a research study that spanned 4-6 months. Most people saw improvements in the first two months, I think. But I don't think they were on any psych drugs. As for tapering down on meds...obviously I'd get the prescribing doctor on board. I only wanted to mention it as something to keep an eye on. In hindsight, I started seeing the need to taper down on things after 3-4 weeks and again about a month after that. But I didn't recognize the signs until later. The signs of "too much" looked a lot like the signs of "too little" and I was actually tempted to add more into the system instead of backing down like I should have. Do a search in mthfr.net about niacin. That helped my DD put an end to Evil Child when I finally realized my over-zealousness was the root of the Evil. But I'm not exactly sure how you'd manage things with an SSRI or other psych med.

Both of my kids did really well with bactrim, even my DD who's allergic to most abx. Ironically, bactrim is one of the few abx she can take. It made a huge difference in my DS when we first started bartonella/lyme treatment.

Omega 3s aren't good for my son. He has pyroluria, which can lead to an Omega 6 deficiency. Omega 3s and 6s apparently compete for binding sites, so those with pyroluria are advised to take evening primrose oil - an Omega 6 that's anti-inflammatory like the 3s. He does much better on this.

No pre-med background for me. I was a communications/art/business major, so take my interpretation of medical issues with a healthy bit of skepticism and always run it by your doc or your own research. I've been known to make mistakes now and again. As for IV glutathione, it's something I see a lot in lyme land and even in regular integrative discussions. I just don't think the Pandas docs are tuned into detox issues. Methylation is not a big focus in conventional medicine (outside of cancer circles) and it's only with the progress of DNA mapping in the past decade that something like MTHFR is even starting to be understood. Just my personal opinion, but I think by looking at Pandas as autoimmune (and I'm not saying it isn't), it sorta leads you to look at things in terms of shutting things off, at suppression. My big "spiritual awakening" on methylation and my own experiences treating my kids has convinced me that - for my kids - supporting the body's systems has been more helpful than suppression. So if, when my son was in a bad place, we'd been able to do IV Glutathione, way back before we'd been bled dry by medical expenses, to do it over again, I'd jump at the chance to do IV Gluthathione. I just don't think it's an idea that's well understood in conventional medicine yet (but I do think it's changing and I think the more that parents bring these idea into the doctors' offices, the more parallels are found between ASD lyme and Pands, the more it will start to be discussed). JMHO For your son, you can research glutathione precursors. My son takes alpha lipoic acid during herxes to help in this regard. But there are other things you can use too. As for too much of a good thing - probably true in all aspects of life. For my daughter, when the things that had helped were suddenly not helping at all, it was a clue that we'd tipped the scales. I think it you do a dose of something and it works for awhile and then you start thinking maybe you need to increase, maybe also ask if you need to actually decrease. This is true for SSRIs in our kids. I think it's probably true for other things too. It's making me much more methodical and "scientific". X is supposed to make Y happen. I didn't get the response I expected. Why? There's always a reason why. Just FYI - my DD had worked up to 800mcg of methylfolate and 500mg tryptophan. After we stopped supplements to do the urine test and her bipolar stopped almost in its track, she took a 1 week holiday and she improved each day. But at the end of the week, the scale started tipping and mood swings started to come back, not as severe, but there. So I broke the "no supplelents" drought and gave her 200mcg of methylfolate (but no tryptophan). We tweaked for a week and now she seems to be stable if we do 200mcg methylfolate every other day, no tryptophan. During times of stress or illness, this may change. So I now use her behaviors to guide. I know this must make me sound like a complete nut, playing mad scientist with my kid. I do have my LLMDs input but even he concedes that it's all so highly individual and will change day to day based on health, diet, seasonal environment, stress - that you try to find that spot where the body gets just enough - s spot that's never in the exact same place one day to the next. I am trying to evaluate our supplements and only use what's necessary. But what that means changes sometimes. Funny, the more I learn, the fewer absolutes I find. I'm having to become much more comfortable with shades of gray (and I don't mean the books!)

Norcal - I'm glad you're starting to put pieces together. My passion for methylation is that not everyone will have the same issues, but somewhere along one of these 4 circles, you may very well find something that's been your road block and you may see a way to build a detour. For you, it might very well be along the transsulfuration pathway and glutathione/oxidative stress. For one of my kids, it revolved around B6 (which also plays a role with glutathione) and zinc (the immune system's bullets). For the other kid, it was MTHFR. So I don't beat the drum because I have "the" answer. It's just that understanding this diagram offers so many possibilities to explore that could give you "aha" moments. You can find some good Youtube videos on methylation and oxidative stress that explain it better than I can. BTW - your comment on tylenol and glutathione - one of the worst pieces of advice my former pediatrician ever gave me was to give tylenol after a vaccination to help with any crankiness. Tylenol reduces your ability to detox the aluminum, thimerasol, etc that can come with a vaccine. Don't want to get into the whole vaccine issue on this thread, but if you do vaccinate, never give tylenol afterward.

My Pandas/lyme son was once a huge ticcer. Local doctors were ready to give him a TS diagnosis immediately and had their script pads ready. Within 2 weeks, we were offered 4 different psychotropics but not one "expert" (we saw 3) would give us antibiotics despite a recent case of scarlet fever. In our case, there were probably two factors contributing to my son's symptoms. The first was some sort of auto-immune response that's Pandas. The second was an inability to rid his body of cell damage caused by his immune system waging war - toxins released by dying bacteria, oxidative stress damage from inflammation, a backlog of junk that his body couldn't clear fast enough. Ignore that comment about Pandas kids not getting high fevers. That's never been a criteria or diagnostic tool. I think it's there to let parents know that if their kid didn't get a high fever, it doesn't mean they're not sick. But my son always got high fevers that could last 5-6 days and make him delirious. You may want to try motrin for a few days. It has to be ibuprofen, not tylenol. Give the age-appropriate dose every 6-8 hours on a steady basis - upon waking, again in the afternoon and then at bedtime. Do this for a few days and see if you notice an improvement in behaviors. Not that they'll disappear, but you may see better mood, less defiance, less anxiety, less impulsiveness. You probably won't see any change in tics. But if you see any change, it's a sign that inflammation is playing a role. You say you don't notice any improvements from antibiotics. It's possible that this isn't Pandas. It's also possible that there's a chronic infection - like mycoplasma, lyme, chronic sinus infection...that a 10 day course of abx wouldn't eradicate. This has been the case for many kids and one reason behind Pandas being expanded to PANS, which is a bigger umbrella of infections that can trigger the same set of symptoms. No one here can say what you should do. As you know, living with TS is really hard but doesn't doom you from living a good life. However, it seems like pursuing the possibility that infections could be behind these symptoms could save your family from a lot of struggles. What have you got to lose, except for a lot of money

double post

Nursing my own son thru a lyme herx at the moment, so I'll write more later. But if your DD was sick enough to test positive on CDC. its highly possible that 3 weeks of an abx did not get rid of it. Lyme and Pandas symptoms look very similar in some kids and lyme can also cause an autoimmune response. I'm sorry for your horrible LLMD experience. You should never have to buy supplements from your Dr and it sounds like your care was very poor. But I wouldn't dismiss lyme and co-infections (mycoplasma being one of several tick borne infections) as at least one force behind your DDs symptoms. Some of us have kids with both Pandas and lyme. If you can say what region of the country you're in, maybe someone can suggest some resources for you.

E - No, I don't feel "challenged". I respect your reluctance to rock the boat and I also know your kids have much better diets than mine. So I think it's an individual decision influenced by a number of personal factors. It would be interesting to test your DH. If he has a mutation, using a supplement could potentially lower his stroke risk. It's one of those insurance things - you'd likely see "nothing" as a response. But silently, he could be dodging a bullet. Dee- you may want to contact your LLMD and talk about ways to reduce the abx - maybe fewer days per week (sometimes abx are taken 2x/week or some sort of on/off rotation) or maybe a lower dose? It's one thing to push thru a herx of muscle pain or anger. But when it interferes with her ability to take meds, it might be time to back down or go slower. You might also ask about alpha lipoic acid or resveratrol to help with detox once she's past her pill issue. Keeping you in my thoughts...

Oh, these symptoms all sound so familiar. Remember, PANS can be triggered by many illnesses, not just strep. The fact that you know of at least one active virus that appeared that the same time of this episode points to PANS. You don't need strep to have PANS. I find it interesting that your daughter has had cosackies multiple times. Most kids get it only once and then have immunity (tho my DS has had it twice). You may want to run a viral panel to check for epstein barr and HHV-6. There are other illnesses that come "overnight" beyond strep and even beyond viruses. You can be bitten by a tick and then "all of a sudden" have your world change. You can catch mycoplasma pneumonia and develop symptoms overnight. So I wouldn't drive yourself crazy looking for strep or dismissing PANS just because her bloodwork is "normal". You may want to consider an integrative doctor who understands infections. I know of aome lyme doctors in your area who would look for multiple infections. Some parents embrace using an LLMD (lyme literate MD) and others feel that these docs will automatically give you a lyme label. That hasn't been my experience but I respect why some might be reluctant to use an LLMD. There are several parents from the DC area, so I'll leave it to them to give you specific names. But I would certainly encourage you to pursue PANS.

I don't think methylation is the only thing at play in Pandas kids. I don't think if you bypass one known gene mutation that you've cured Pandas. I suspect my DD will still be susceptible to issues when she gets sick. But I do think that if you have this mutation, there's an extra strain on things like your body's ability to produce enough glutathione, enough SAMe, especially when illness puts demands on some of the things that are produced by methylation. There just isn't enough to go around. So for my DD, supplementing with methylfolate (a small amount), it helps increase the supply of important materials in the system. There's something written here http://mthfr.net/mthfr-mutations-are-more-than-high-homocysteine/2011/09/20/ about why using homocysteine levels isn't necessarily the right benchmark. Yes, I do think the body needs to detox more when sick. Glutathione removes damaged cells as well as toxins released by bacteria. You have macrophages that are eating up bacteria like little pac men and then need to be eliminated from the body. So illness would certainly increase your need for glutathione. Methylfolate, combined with methylB12, encounters homocysteine and one of two processes occurs: that homocysteine is either recycled in the methylation cycle back into methionine and then SAMe (which then becomes seratonin) OR it converts homocysteine into cysteine which then gets converted into glutathione. Well, if your body needs more glutathione during illness, then it's pushing more of the methylfolate/methylB12 down the pathway that leads to more glutathione, potentially leaving a shortage of methylfolate/methylB12 on the other pathway that creates SAMe (and also creates ATP - which is cell energy - which could be why you feel so tired when you're sick - not enough methylfolate/methylB12 to satisfy both pathways). This is one reason why docs will give methylB12 shots to lyme patients who are chronically tired. So should you supplement your DD? You need to follow your gut. I personally think that not supplementing with a low amount of methylfolate for my own DD and myself is playing Russian Roulette. The incidence of heart disease, stroke and macular degeneration are extremely high in my family tree. To know that we have a genetic defect that we can bypass - I feel obligated to do what I can in that regard, Pandas or not. I think I'd be supplementing methylfolate regardless of whether it helped DDs behaviors, just out of a sense of protecting her from future health risks. But I'm also big on orthomolecular medicine and supplements. So that's my personal bias. I can't say it should be everyone's answer.

Here are the links I've bookmarked for myself... http://www.renewashoe.com/medical/ http://www.mthfr.net http://forums.phoenixrising.me/index.php?threads/documents-by-rich-van-konynenburg-parts-1-7.11488/ http://www.enzymestuff.com/methylation.htm http://www.knowyourgenetics.com/The%20Methylation%20Pathway.html http://www.autismone.org/content/dr-amy-yasko-presents-assessment-metals-and-microbes-function-nutrigenomic-profiling-part-1-