LNN

I would love to find a multi that met our needs. Unfortunately, I can't find one. So we too use individual supplements for the stuff that's most critical. Once or twice a week, I'll give the kids a multi in a feeble attempt to compensate for poor diets. But not on a regular basis. This one is under consideration http://www.seekinghealth.com/best-multivitamin-for-kids.html but it's pricey, you need to take 4/day (I'm trying to reduce, not increase the number of pills) and I'm not crazy about some of the doses of things.

Here's some great info on Pandas from the International OCD Foundation http://ocfoundation.org/PANDAS/. I'd have your son swabbed for strep and ask for a culture as well. I'd also ask for two blood tests called an ASO titer and an Anti-DNase B titer. Both measure the body's levels of antibodies against strep. The ASO generally rises 1-3 weeks after an infection and the Anti-DNase B generally rises 4-6 weeks after infection. However, some kids don't show elevated titers even after an infection, so it's something that can show if your son's had a recent infection but it's not conclusive. If you have a supportive pediatrician, it's possible that armed with OCD Foundation handouts, you might be able to get a trial of antibiotics to see if you notice any behavior changes. But many pediatricians are very reluctant to prescribe abx. You also mention a rash. You may want to look here https://sites.google.com/site/drjoneskids/rash-photos for a sample of rashes caused by ticks. You don't say where you live, but a tick infection (lyme and other infections) can also cause sudden behavioral changes and OCD. Either way, a trial course of antibiotics might be very informative. In general, childhood OCD tends to creep in over time. Sudden onset OCD as well as sudden onset ADHD, raises flags that an infection could be your trigger and if that's the case, treating the infection can eliminate the OCD and ADHD.

If Food Network ever had a Humble Pie eating contest, I think we'd all be in the running. But it still sucks when you realize you're the one responsible for the last 4 weeks of $@#! I was trying to explain methylation to someone and went searching on youtube. I found this It's 9 min and a good, basic overview about why someone with a child with behavioral issues should consider testing. It doesn't go beyond that, but I thought it was a good Methylation for Dummies intro. If you search on MTHFR on youtube, you get some other interesting hits of longer videos. I haven't watched any of them but for those with nothing to do on a Saturday night...

Some of you know I've been bitten by the methylation bug in a big way for the past year or so. It helped me make sense of many of the things I saw happening in my kids. My daughter is MTHFR C677 heterozygous. This means she processes folate at maybe 60-70% as efficiently as someone without the mutation. But it doesn't mean she can't process folate into methylfolate at all. Just less effectively. When we started treating, we supplemented with approx 265 mcg of methylfolate/day (one drop of yasko's liquid methylfolate). Then we built up to 800mcg, as this was my understanding of her recommended dose. For the first few months, DD's mood improved. I made a mental note that as her system re-balanced, I'd have to remember to come back and re-assess the doses of other supplements like tryptophan. Well, things are humming along and by May, I'm patting myself on the back thinking we might finally be done with seeing doctors. Then in June, DD starts having mood issues. Coincides with our getting a new rug, so initially suspect VOCs. Then I suspect allergies, Then yeast. DD continues to backslide, with angry attacks (physical and verbal) on me, provoking arguments with everyone, irrational, rapid mood swings, depression, insane silliness that ends in a flash of evil temper. Insomnia, headaches, muscle pain, fatigue. Yet yeast/antifungal treatment does little. Motrin only helps slightly. An ear infection makes me think Pandas flair, so we up her zith, which helps. But not entirely. So I ask our LLMD for an amino acid test kit to try to figure out what's out of whack. To prepare for the test, DD stops all supplements for 24hrs. Guess what - her issues go from a 9 down to a 5. I head over to MTHFR.net where the doctor describes a case study of a guy who over-supplemented with methylfolate and experiences some of what DD felt. The doctor suggests a small amt of niacin (50mg) as an antedote (niacin requires methyl groups for synthesis, so if you have too many methyl groups (overmethylated), niacin sucks up the excess). I gave DD a small amt of niacin and she did seem calmer - a rage stopped within that hour. So for this past week, I've given her nothing but zith and probiotics. Every day, her mood issues and body pains improved. Her insomnia got better. Everything got better. By the end of the week, her issues were a 1. Now, I see small things that seem to be swinging the other way. In time, I think I'll add back one drop of methylfolate but probably only every third day to start. I'll reassess the other supps too. (which I so smartly planned to do when we started all this but then forgot to actually do it). So while I still think supporting methylation and similar processes has been key for my kids (methylfolate for DD, pyroluria for DS), I just wanted to pass along my lesson learned the hard way. Yes, an ear infection probably contributed to the mess. But my over-zealousness had a hand in the mess too. So for those treating MTHFR and other deficiencies, just a reminder to periodically re-assess and remember that "enough is as good as a feast' and too much can be as bad as too little.

Pyroluria is a condition where your body produces too many pyroles (a byproduct of blood/heme synthesis). Pyroles are "sticky" and have an affinity for zinc and B6. So excess pyroles stick to your body's supply of zinc and B6, making them bio-unavailable (even if zinc plasma levels are normal)to other body processes. Since pyroles are a waste product, your body works to eliminate them, causing you to pee away valuable zinc and B6 along with the pyrole waste. Because zinc keeps copper in balance, a zinc deficit can lead to excess copper (nothing seems set in stone - every body is a little different and genetics, diet and health can influence this). So I expected my pyroluric son to have elevated copper. He didn't (tho we only tested plasma, not free copper or any other means of testing). He also didn't have a copper personality. Tho he had rages when he herxed, he didn't have the intense mood swings, the artistic flair, the whimsy or spaciness. In fact, after supplementing zinc/B6 for about 6 months, he started consistently testing low for copper (which would make sense, since we were adding so much zinc into the system every day it was sort of a natural copper chelator). So now he actually takes both zinc and copper. My daughter, on the other hand, tested only mildly pyroluric (13 - with our lab reporting below 10 neg, 11-19 mild, above 20 positive). However, her copper plasma levels were high and she did fit the copper personality. So she "fit" what I expected to find more so than my definitely positive pyroluria son. We chelated with edta for 6 weeks and now just use a small amount of zinc/b6 to maintain balance. Lat time we tested her copper it was in normal range as was zinc (I'll post about her experiences in a separate post regarding MTHFR) So to your question of pyroluria and copper personality, I think pyroluria can contribute to a high copper situation. But I don't think you can count on it. I also think you can have a copper or zinc imbalance without pyroluria being the cause. I'm not sure I can blame the differences in my kids' personalities on pyroluria, tho I've seen old articles attribute "criminal" behavior to pyroluria. Not sure I put much credence in that. Probably had to do with many of the pyroluria studies being done on the criminal and mentally ill populations in the 70s. Pyroluria effects my kids in very different ways. For my son, the "true" pyroluric, it left his immune system weak (prone to infections and it generally took him longer to recover from an infection) and really effected cognitive abilities. Do you remember the commercial for Zest soap where they cover one sheet of glass with "a leading brand" and the other with Zest and Zest has no film while the other piece of glass leaves a haze? Within days of starting the zinc/B6 supplement, it was like someone came in and cleaned all the glass. His personality started to shine, he would laugh at jokes he didn't previously understand, he rolled with things instead of getting excessively upset, he would notice small details and he was just more "awake" and "alive". As time went on, he made huge gains in academics as well. My daughter never had that film. She's always been very bright and her issues don't really effect her schoolwork or learning abilities. I don't what role copper plays for him, but I sure know how essential zinc is. I think treating his pyroluria also removed a major hurdle in his lyme treatment. So how much of the improvement was from treating pyroluria vs. treating lyme is hard to say (I can only say lyme treatment had stalled until we cleared pyroluria out of the way). I know a few other parents have seen some nice improvements when they treated pyroluria - maybe they can chime in with what changes they've seen. In my family, it's a soup of issues, so it's not east for me to say X caused Z.

Has your LLMD been treating for lyme or co-infections? If so, for how long? Was there any kind of herx response to treatment? Lyme and co-infections can seem to wax and wane. Someone on the lyme forum posted about this a few weeks ago. The bacteria have life cycles that make symptoms ebb and flow. Your son's response to treatments is just as telling as any test. On the tests - that's a personal decision. Lots of pros and cons. Re-reading your list of symptoms, I'd also ask your LLMD about mold and maybe run some of the tests for inflammation listed here http://www.survivingmold.com/diagnosis/lab-tests especially the C3a and C4a immune complexes. Here's an article that explains the possible significance and these tests are covered by insurance http://www.jacemedical.com/articles/C4a%20C3a%20testing%20for%20Lyme%20disease.pdf

Agree with Nancy. The other possible "motivation" for the repeats could be an irrational fear that if he doesn't make sure the person knows he's thankful, and something bad happens to him or them, he'll never get another chance to say thanks. Or maybe, if he doesn't say thanks, he might be punished (by God or some cosmic force, depending on his/your beliefs). Or maybe he made a bargain with God before the surgery like "God, if you let me be ok, I promise I'll be extra good for the rest of my life". So there could be a fear of retribution or a form of scrupulosity at play. It could be hard to get him to admit why he does this, because sometimes OCD says "if you tell anyone, something bad will happen" much like a kidnapper tells a kid that if they run for help, the kidnapper will harm the victim and his family. But E/RP has to focus on the fear behind the compulsion, so getting to the reason "why" is an important part of extinguishing the fear.

Personally, I'd wait until school was in swing. With his history of school issues and the anxiety of a new school, you'll have a lot going on already and adding zinc/chelating copper at the same time will make it hard to tease out what's what. Now, it's possible that the high copper may contribute to some mood issues but I'd probably still do one thing at a time. If you move slowly and you add a binder like charcoal or bentonite clay (can get in capsules), you can probably chelate the copper without too much reaction. My DD took a small dose of EDTA plus zinc as part of her copper chelation, and we didn't see many bad things. The one thing that would change my advice is if DS struggles with cognitive issues. For my DS, who has pyroluria (but didn't have a copper issue), adding zinc made a huge improvement in his abilities and we started the zinc about a month before school last year. When he started school, he was the best he'd been in years. But if this isn't your case, my advice would be to do one thing at a time.

I also read on another of your posts about your son's declining IQ scores. I'm hoping another member chimes in, because she has "proof" that the scores can also go back up when they get healthy. Contrary to popular belief, IQ is not set in stone. It's a fluid measurement reflecting a point in time. It also only measures certain aspects of the ability to learn. It isn't a complete picture. I struggled with this for a very very long time. Is my son permanently damaged, is he "dumb" or permanently impaired? I can tell you a resounding No. I've seen his abilities grow much stronger as we've gotten him healthier. Your son's IQ was measured long after the "critical" years of development had occurred in toddlerhood/early childhood. If he was bright then, you should believe that he is still bright. It's just that inflammation and changes in brain chemistry are impairing his current abilities to show what he knows. Although he's been sick for a long time, you are early on in treatment. It does take time - a lot of time - with the correct treatments - to get back to good health. Like PowPow, we've used a combination of treatments - some worked well, others not so much. What works for one child doesn't always work for another. But the key is to keep trying and keep learning. This is not a cookie-cutter illness. It takes super-human strength to keep digging, often with several types of doctors and approaches - but there are many on here who've been able to get their children back despite years of illness and misdiagnosis. Pex might help. But don't despair if you can't get it. You have options and your son is NOT lost.

From what I can tell, the ADD mind works best when it's multi-tasking. It drives me nuts when my DS fidgets with something when he's supposed to be doing homework, but to him, it helps him focus. He's allowed to chew gum in school if his concentration is waning and he chews gum during homework. He uses fidget items (tennis ball, paper clip) to keep his hands busy when he's reading or concentrating. Listening to music ironically helps. It's counter-intuitive. But I think if the ADD as something that's bored and wants in on the action. If we give it something to play with while DS is trying to focus, it seems to help a lot. I've never read this book but bookmarked it because it seemed to address some of the ADD issues. http://www.amazon.com/Fidget-Focus-Boredom-Sensory-Strategies/dp/0595350100/ref=sr_1_1?s=books&ie=UTF8&qid=1329751649&sr=1-1#reader_0595350100 Tyrosine also helps my son's brain fog, but that may be a different issue than his intermittent ADHD issues.

Not sure what a BIE is, but you might want to let him/her know about your son's reaction and ask about trying the Bs one at a time. Since he/she knows your son's symptoms and feels something is deficient, ask which of the Bs you should start with first and at what dose. If they don't have specific recommendations, I'd start with B6 - but a specific form of B6 called P-5-P or something that has a a blend of this and other forms of B6. B6 is a co-factor to a lot of activities that influence neurotransmitter synthesis and the immune system as well as the detox system. When I checked Amazon, the lowest dose I could find was 50mg. Not sure how much your son weighs, but I'd start lower than this and build up. Maybe half a capsule/tablet or even less. When I do a trial, I start at the lowest dose for about 5-7 days, then increase the dose and stay at that for another 5 days and then go from there. I try not to change anything else during that time. Many people supplement with B12. From everything I've been told, this vitamin is very poorly absorbed as an oral supplement. Something like only 1% gets absorbed and thru the stomach acids. So I would not waste money on a B12 trial. If your doctor feels this is really important to add, get either a sublingual supplement that dissolves under the tongue or discuss B-12 shots. B-12 is needed for energy. It would be something to consider if fatigue is a big symptom, but otherwise it would be lower on my list of things to add. Inositol (formerly called B8) was good for my son's anxiety but it was at significant doses (5grams) and he has no methylation issues. It was mildly helpful for my daughter at 2.5 grams (she does have a methylation challenge) but large amounts generally aren't needed unless anxiety is a big symptom and even then, other supplements can be equally or more helpful. Given the hit-or-miss response that Smarty refers to, it wouldn't be one of the first B's I'd experiment with. As for the other B's, I'd research each one (not relying on a single source because most sites aren't very thorough) and hit the ones that strike a chord. Always try to find out if there's an activated form of the B - for example, methylfolate is the active form of folate. Methylcobalmin is the activated form of cobalmin (B12). Niacinamide or nicotinic acid is the active form of niacin. P-5-P is the active form of B6. Whenever possible, buy the activated form, as some people may have problems converting a vitamin into it's activated form (this is the jist of why MTHFR is important for some - the MTHFR mutation sometimes prevents the body from converting folate into the active form called methylfolate, so you need to supplement with the active form, which bypasses this defect and gives the body what it can't make on its own). Always start with a low dose. Sometimes a bad reaction isn't due to the supplement itself but rather too high a dose or too high a starting dose. When someone hasn't had water for 3 days, you can't give them a gallon to drink. You need to start with sips. Giving a gallon of water to start with would kill them. The deficient body needs time to adjust and re-start systems that have been shut down. But please don't rely on my limited knowledge. Please check with your doctor first.

The convenience of a B complex is tempting. But we've chosen to do individual Bs. Due to a similar but less severe MTHFR mutation as NancyD, my DD needs a special/methyl form of B9 (methylfolate) but B3 (niacin) needs to be restricted because it counteracts some of the benefits of Methylfolate (for her, not necessarily for everyone). From the site mthfr.net: Nicotinic acid (Niacin USP) requires SAMe to be metabolized. SAMe is a major methyl donor. Thus, when one consumes niacin, SAMe gets used up and methyl donors drop. Thereby excessive methylation goes away. My daughter is an undermethylator, so anything that's good for overmethylators is "bad" for her. She generally needs to avoid excess niacin (unless she gets too much methylfolate - a personal experience I'll post about in the coming days) The site goes on to explain Nicotinic acid is a cofactor for the COMT enzyme. This enzyme helps breakdown norepinephrine and epinephrine – and estrogen. These are all commonly elevated in those with anxiety. Since the COMT enzyme sped up, the breakdown of these occurred faster. Now, my DD has anxiety, but I'm not sure about the status of her COMT gene (can't find a lab to test it - anyone have ideas beyond Yasko?). Lots of things can cause anxiety. So I don't want to be breaking down neurotransmitters faster than planned just because it's more convenient to take one B complex instead of select Bs based on her individual needs. Not sure about tics, other than to say that when my son couldn't get rid of toxins quickly enough, he ticced. If the B complex has helped revitalize something in the body, the increase in tics could be a temporary response to the body waking up again and re-starting processes that had been lagging before. So you may have ended up giving him something he really needed, but maybe in too high a starting dose. But as a complex, it's hard to speculate on which B was behind the response. Another reason I stay away from the complex. I want to be able to tailor doses and only use the Bs that seem to be needed for each kid.

I'm not understanding why Cigna is denying Pex. Here's they're coverage guidelines for 2011-2012 http://www.cigna.com/assets/docs/health-care-professionals/coverage_positions/mm_0153_coveragepositioncriteria_plasmapheresis.pdf and on Page 2 it says it covers Pex for Pandas specifically. This policy has been in place for years. They covered my son's Pex in '09. Don't ask me how it was coded - I didn't get involved. It was handled thru Dr L's office. That said, I too had very high hopes for Pex. It did help. I have no regrets. But in our case, it wasn't lasting and we eventually found other ways to address issues. It took a few years, but my son is a zillion times better - not out of the woods but a far cry from the bad old days. A completely different kid. So try not to despair. If your son was once bright and functional, you can get him that way again. I in no way believe in the permanent damage theory. Sure, there can be habits that have to be unlearned, new pathways that must be forged in the brain. If you hit your thumb a dozen times, I'm sure it may always be tender and prone to repeat injury. But I don't think that means it becomes non-functional. There are other options still at your disposal and I don't think it's the end of your road, even tho I'm sure it feels that way right now.

No practical advice from me. Just wanted to let you know about the pang in my heart as I realized one of my adopted kids is heading to college "soon"! I've spent so many (too many?) years keeping tabs on your DS and some others that they end up feeling like family. Tell him that his Aunt Laura whom he's never met can't believe he's all grown up now!

Personally, I'd push for a longer course of daily abx. FWIW, my son's 1st grade teacher thought he might have high functioning autism. Now that he's in 5th grade, the idea seems preposterous. The delays and brain fog were all medical in nature. Once we unraveled the ball of yarn (and continue to unravel), these melted away. if you see days where she's sharp, then that's the real her. Kids with true delays and deficits don't have moments of brilliance. But kids with PANS are often bright kids who get muffled by illness. I think you are on to something.

Last summer, I went on the mold roller coaster and my husband almost divorced me when, on the hottest day in July, we spent 6 hours loading a rental cargo van with nearly everything in our basement and made 4 trips to the dump. Musty cardboard boxes, old sheet rock, left over insulation... Then I got crazy looking elsewhere - found a leak under the kitchen sink that left mold under the false bottom of the cabinet, went nuts cleaning mold in the window frames where moisture condenses, know i was being paranoid but couldn't stop. And then I found gobs of the stuff on the drum of my washing machine, on the side that doesn't show when you look inside. Had to take it apart to get to it. I wrote about it in the Latitudes magazine a few months ago. That made a huge difference for me and my son. A stupid washing machine! You can drive yourself nuts - and broke. We've replaced one rug with a wood floor and one carpet with a new carpet (yes, I'm a bad mom, but in new england, hard wood floors get really cold and I wanted at least some carpet - there's a balance that has to be struck). So I think you're right to replace the system and you should absolutely look at remediation. But educate yourself first - doing it wrong will be a waste of money. And take some time to catch your breath. Your house is no more toxic today than it was yesterday. Nothing's changed except your knowledge. Yes, address the problem. But you can prioritize. You can live on subfloor for a few months if you need to. You don't need to go bankrupt and do everything right this minute. Catch your breath. There are several Pandas moms on the lyme forum who've been in your shoes. Post over there if you haven't already. I do think we collectively need to create a lyme/mold/Pandas book for dummies. But part of it is a process. I don't know that you can absorb all there is to know all at once. Sometimes, it takes thunderbolt experiences like you had before you can make room in your head for one more possible money pit to explore. But as S&S said, one step in front of the other and you'll be able to get thru it. Just try to stay calm. it's the single most important piece of advice I can give (now if I could only follow that advice). Edit - forgot to add that zith+augmentin is far from your only abx combo option for lyme. That combo never did squat for my son, tho it does help others. We've used bactrim, zith, augmentin, omnicef, rifampin and tindamax in various combos for various lengths of time. Rather than fight the zith battle, see if omnicef might work. Ask your pharmacist which liquid abx can be flavored. (bactrim liquid was acceptable to my kids but the pill form was horrible and was spit out more times than I can count). Read up on handling herxing, especially with mold in the picture. Then I'd start looking for an LLMD and get on the waiting list, which can be quite long. You can always cancel but 3-4 months from now, you may be glad you have an appt with one. I give Dr B credit for looking for lyme. But Pandas is his specialty. Between the lyme and the mold and being on the opposite side of the coast, I think you're going to need an LLMD at some point. But for now, you can ask for a second abx other than zith.

One of my sisters is "famous" for sending out a holiday newsletter that raves about how well her kids and grandkids are doing. One year early in our Pandas days, I sent a mock newsletter to my other sister, bragging about how my son was overcoming his OCD and now only had to touch things twice instead of 10 times, saying how proud we were that my daughter wasn't going insane on a daily basis. The second sister (who struggles with bipolar) appreciated the humor (don't think the first sister would have). I love these moments, where you get to see the real kid, the kid you know is in there but the rest of the world rarely gets to see. These are the moments you hold onto, the ones that get you through the dark times. This year, you can send out your holiday cards bragging about your "does it matter?" accomplishments! It is way bigger than any report card or sports championship - congratulations to him!! (and you for getting him there).

I don't know the answer on the effects of pulsing abx vs. continuous abx for any length of time. Both will assault the "good" as well as the bad bacteria in the gut. So the need to repopulate with probiotics is really important in both cases. The threat of yeast overgrowth is also high in both cases. So I personally think it's important to use not just probiotics but other anti-fungals like garlic, grapefruit seed extract or something similar on a regular basis. Yeast has been the cause of some behaviors I initially thought were a Pans flare. But it hasn't been the only non-infection trigger. My son developed tics (which had been gone for 18 months) when he started a particularly aggressive abx program for lyme last year. It was a result of herxing and his body not being able to keep up/eliminate the toxins being released from the dying bacteria. When you start treating a chronic infection, or supplementing nutrients such as zinc or D or methylfolate, you can re-start some under-performing body systems, especially the body's immune and detox systems. In addition to triggering a herx response, you can also turn a trickle of toxins in your waste elimination system into a flood. Metals, fungals, viruses - can also start to come into play as you make the body stronger. These things might've been there all along but move from back-burner issues to bigger issues as the body is better able to deal with them. So detox becomes really important. So whether you pulse abx or use them long term, I think the appearance of tics tells you that something is going on, but I'm not sure you can assume it's yeast. It could be several other things. I'd suggest asking for a blood test to detect yeast antibodies to better hone in on what's behind the tics. I'd also put these other things on your radar. If your son is on a roller coaster of sore throats and illness and can't seem to stay well, it could be a sign that some other chronic condition(s) (infection, metals, virus, fungal infection, nutritional deficiencies) are in the picture. Directly back to your question, any time you use abx, you're reducing the levels of good bacteria in the gut. In addition to the other things I've mentioned, you absolutely need to add good bacteria back and use anti-fungals (prescription or natural) to keep yeast (which is always present in the gut) from overwhelming and inflaming the gut.

I have two kids who are PANS. But they are also more than that. Infection clearly pushes them off cliffs and abx are a key component of getting them back. But abx alone are not their be all and end all solutions. Reading your other post of all your kids, it seems that they too have additional factors at play. It does seem that abx will be a big part of your treatment plan. It does seem that they'd fall under the PANS category. But for your 4yo, I'd definitely keep those tonsils in the spotlight and also keep an eye on the sinuses. Sinuses are a great place for biofilms and chronic infection. I've posted this many times but if you haven't read it, it's well worth your time http://bacteriality.com/2008/05/26/biofilm/ Given the autism-like behaviors, if you can find the time, this video by Amy Yasko is filled with things to thing about (it's long and you may need to watch it in chunks - it's a lot to take in at once - but very very thought provoking). http://www.autismone.org/content/dr-amy-yasko-presents-assessment-metals-and-microbes-function-nutrigenomic-profiling-part-1- We pursued infections as a starting point for both kids. Then moved on to detox and nutritional deficiencies. In my son's case, a genetic zinc/b6 deficiency known as pyroluria (aka KPU) was a huge factor, as well as lyme. Treating his pyroluria made an amazing difference in his brain fog/cognitive performance. It was like he woke from a coma. For my daughter, a genetic problem with processing folate (Vitamin B9) caused by a mutation in the gene called MTHFR, resulted in major mood swings and anger that made her seem literally insane. Treating this made big improvements in her rages and anxiety. We also treated a high copper problem, which can cause bi-polarish behaviors. So my point is that yes, it certainly seems wise to pursue a long course of abx and continue to be alert for chronic infection (tonsils, sinuses, mycoplasma). That's probably your first layer. Then prepare yourself for additional digging, as you're likely looking at an interplay of factors. But the good news is that it can be unraveled, one step at a time.

I posted this link on another response but wanted to make sure you see it: https://chronicillnessrecovery.org/index.php?option=com_content&view=article&id=175 Vitamin D metabolism dysregulation is thought to be a mechanism that intracellular bacteria use to hide from the immune system and defeat the action of antibiotics alone, allowing them to multiply safely sequestered within the cells. Vitamin D Receptors are blocked by bacterial proteins causing the inflamed tissues to produce an excess of the secosteroid 1,25-dihydroxyvitamin-D in an attempt to activate Vitamin D Receptor (VDR) transcription. The blocked VDR allows the bacteria to colonize the phagocytes, avoiding the lysosomal phagocytosis. It's well worth reading the entire article - lots of "aha" moments for me. But it seems certain bacteria can interrupt your Vitamin D synthesis. Supplementing D would boost your immune system and perhaps allow it to kill more bacteria, resulting in a herx-like response.

I don't know that there's only one answer to this question, but here are a few possibilities: - abx do not necessarily clear any infection single-handedly. My understanding is that abx work is that it either prevents the bacteria from forming a strong cell wall (an extracellular abx like penicillin), allowing the immune system to destroy the bacteria or it gets inside the same cell that the bacteria has invaded and prevents that bacteria from making proteins it needs to survive and replicate (intracellular like azithro). But the abx is only a partner to the immune system. The abx slow the enemy down. The immune system still needs to work in conjunction with the abx to get the job done. Anything that inhibits the immune system can hinder the effectiveness of the abx. Like fighting with one arm tied behind your back. Things that hinder the immune system include - multiple or consecutive infections, low vitamin D, low zinc, high levels of oxidative stress and or/inflammation, nutritional deficiencies, toxins... Complicating things, when you've been sick for a long time, the bacteria start to form biofilms. This is a big topic in lyme, but many bacteria form films, not just lyme. The plaque on your teeth is a biofilm of mouth bacteria. A biofilm can become a slimy home for not just the bacteria that builds it - other viruses and bacteria can move into the film community as well. The film serves as a cloaking device - the immune system can't see what's inside and most abx can't break through. Even abx that are cyst-busters, such as flagyl and tindamax - are only partially effective at attacking films. So even with abx, you can have a persistent infection. The bacteria hide in the film, grow, and only break out of the film periodically to replicate and form new film colonies. How often this happens depends on the life cycle of the bacteria. Bartonella has a life cycle of a few days, lyme has a life cycle of 3-4 weeks. So you'll see flares when the bacteria is replicating and is more abundant (and partially visible to the immune system while it's emerged from the film and busy replicating). Here's a good explanation of things: https://chronicillnessrecovery.org/index.php?option=com_content&view=article&id=175 It's a little technical, but I really encourage you to read it in it's entirety. I can't really do it justice with cut and paste but here are some excerpts: Intracellular bacteria have developed the ability to morph into a tiny form with reduced cell walls in order to evade the immune system and survive the antibiotics that kill bacteria by inhibiting cell wall formation. These variant forms of the original parent bacteria have learned how to live within the cells, including the cells of the immune system (phagocytes) that are supposed to kill them. It is theorized that the intracellular bacteria don't block the VDR (Vitamin D Receptor) themselves; they control the actions of the immune system with the proteins and toxins they release. These substances act directly on the proteins and/or kinases within the phagocytic cells to directly release Th1/Th17 cytokines (small secreted proteins which mediate and regulate immunity). It's the proteins secreted by the bacteria themselves that uniquely and solely produce what is called the "Th1/Th17 immune response." The resulting inflammation causes Th1/Th17 inflammatory symptoms. Dysregulated vitamin D metabolism Vitamin D metabolism dysregulation is thought to be a mechanism that intracellular bacteria use to hide from the immune system and defeat the action of antibiotics alone, allowing them to multiply safely sequestered within the cells. Vitamin D Receptors are blocked by bacterial proteins causing the inflamed tissues to produce an excess of the secosteroid 1,25-dihydroxyvitamin-D in an attempt to activate Vitamin D Receptor (VDR) transcription. The blocked VDR allows the bacteria to colonize the phagocytes, avoiding the lysosomal phagocytosis. Olmesartan docks into the VDRInflammation Therapy (IT) uses Benicar to control 1,25-dihydroxyvitamin-D and angiotensin II. Benicar seems to competitively up-regulate the VDR to produce anti-microbial peptides that can then weaken and kill the CWD forms. At high doses, Benicar also blocks key cytokine cascades, thus providing an anti-inflammatory effect and helping the patient feel better. See Benicar. The correct antibiotic regime also weakens these antibiotic-resistant bacteria so the immune system can more effectively kill them. Co-infections When the body is weakened by chronic, inflammatory disease, opportunistic co-infections are common, because the immune system is overwhelmed dealing with the intracellular bacteria. Sometimes bacteria are detectable in the bloodstream by routine methods (co-infections), but these are not the bacteria that usually make people chronically ill. Co-infections that have been resistant to treatment will likely be eliminated by the immune system as its proper function is restored with Inflammation Therapy. So back to your question - it isn't just lyme that seems to cause chronic problems but it's one of the culprits we can test for and when kids don't seem to be able to achieve remission between Pandas flares, it's something lyme parents suggest. Lyme bacteria can take 3 different forms - a rod shaped spirochette (which can be seen by the immune system and the body will make antibodies to), a cyst form (which forms when lyme is subjected to abx, making itself more impervious to abx and invisible to the immune system) and an l-form (having no cell wall and living within a body's cells, sometimes even with the macrophage immune system cell that's supposed to be hunting it down and killing it). Ticks are thought to carry/transmit multiple infections in their stomachs/saliva - lyme, bartonella, babesia, ehrlichiosis, mycoplasma and who knows what else. So you can get multiple infections from one bite and often don't get any sort of bulls eye rash around the bite. But regardless of the co-infection, once the immune system has multiple enemies, it gets very difficult to restore health. Abx alone won't do the trick and certainly using only one abx at a time won't get you well when you have a chronic illness and/or more than one infection.

This isn't Pandas specific but I like the format - it's essentially your child's resume of strengths, weaknesses and goals, with specifics for the teacher to focus on. http://www.pacer.org/parent/php/php-c160.pdf Every year, I meet with my son's teacher and try to explain it all. They nod, they make sympathetic faces. But they don't get it. Then, months later, when a flare crops up, I have to repeat myself and they again nod, maybe a few things ring a bell this time. But the only ones who ever "get" it are the ones who have kids of their own who have issues. I used to believe that I needed to educate them about Pandas/lyme so they could spot other kids who suddenly changed. But now I realize I have about 15 minutes to convey a message and before they leave the table, they need to know not so much about the disease but what they're supposed to do for my son. So now I focus on actions I want them to take and focus less on educating them. This year, my son will have 3 teachers thru the day (5th grade). So I need to figure out how to sum up the diseases very quickly. They don't really need to understand the medical aspect. They only need to know that 1. some behaviors and learning issues are medically based 2. therefore, they need to alert me whenever they see behaviors that are different than his norm or learning issues that need home support. Their input is invaluable in helping me manage the disease. 3. I do not expect them to be an ERP therapist. I only need them to know how OCD, anxiety etc may show up and if they see certain signs, they should call me. We can work thru the details if/when necessary. If they have any concerns during the day and want someone to validate their concerns/observations, they can turn to the school psychologist, who has worked with my son for the past two years and is my ally. 4. They need to know that despite any academic/performance measures, my son is bright and I want them help him realize his potential. Specifically, he should not be pushed to do timed mathematics - he lacks the rapid recall abilities. But he should be expected to master the same math concepts as his peers - provided he has ample time. He may try to hide his shortcomings by letting others in a group project perform when he feels incompetent. But the teacher can use the project as a way to foster his project management and people skills. Specific skills he avoids in a group should be worked on one-on-one. He should not be graded on neatness or artistic ability. These are the kind of specifics I now focus on, rather than spending too much time on disease awareness. Probably not the answer you were looking for, but just wanted to suggest you make sure the info tells the teacher what they're supposed to do about it. They want an action plan.

My son could not sustain remission either. We ended up finding two additional and very significant issues - lyme and pyroluria (a genetic zinc/B6 deficiency). We found these additional issues after one HD IVIG that was a horrible experience. Agree with TPotter that IVIG (and Pex for that matter) can help strengthen the body and stop a current episode. But the research (as well as parent experiences) suggests that it is a therapeutic treatment and not a cure. If you feel your son would benefit, then certainly look into it. But I wouldn't do it with the belief that it will cure and prevent future episodes (tho future episodes may be milder). If you're seeing a recurring pattern, it makes me want to suggest looking at other sources of infection and/or foundational issues like nutritional deficiencies, methylation, detox, biofilms, oxidative stress...these things tend to prevent permanent healing.

This is from my favorite blogger - a mom who's survived raising a son with OCD and managed to keep her sense of humor in tact. Thought some of you packing for vacation would enjoy knowing you're not alone http://www.easytolovebut.com/

I would normally suggest ERP for the eating behaviors, along with pepcid. But with the autism in the mix, I'm not sure how to suggest ERP, unless you can identify the fear behind the behavior/aversion. We have a similar problem with DD, who restricts her eating due to GERD. But she'll happily eat sweets. Just not dinner. Antioxidants seem to help her feel better (we use alpha lipoic acid) but we haven't gotten to the root of the problem. I think yeast is part of it but there's also a seasonality to it - we have this problem every summer. FWIW- alka seltzer gold is used in lyme treatments to help with herxing/detox and to make the body more alkaline. Not very well-read on it - you might want to ask about why it may help your son on the lyme forum. But I'd keep using it if it seems to help. I'd try it here but I can't imagine DD actually drinking the stuff.