LNN

Toaks - I don't have any experience with histadine but Walsh/Pfeiffer & co. advise using folinic acid, B12 (probably hydroxy form for overmethylators) and niacin to try to increase histamine. They advise avoiding Vitamin C, since C is an antihistamine. But in cold/flu season with a PANS kid, I'm still going to give C. Just starting my experiment of using these to see if the tic improves. Too soon to tell yet.

Not sure if you ever did 23andMe, but Alpha Lipoic Acid is not recommended for those with CBS mutations. Ironically, my DS, who does struggle with tics periodically, does fine on ALA and it does not cause tics in him. But...his CBS gene doesn't have any mutations. My DD on the other hand, gets very emotional and irritated on it - and she does have CBS issues. So long way of saying I think ALA, just like NAC and MSM - can really help some and be "bad" for others. I don't think it should be avoided altogether, but if you see negatives, you can't just assume the negatives are due to Pans symptoms. Each supplement you use needs to be scrutinized and not just assumed it's good for everyone. Glad you figured this one out for your DS!

If you live in the area or know an occupational/physical therapist or educator who might be able to attend, please let them know about this training: Pediatric Mental Health: It’s time to make plans for children with PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome) Jan Tona, PhD, OTR will be presenting on PANS in Buffalo, NY on January 28 from 4:30-7:30 PM. This presentation is designed for OTs, PTs, and other health professionals and educators. It is also open to parents and the general public. Dr. Tona is an investigator in the PANS Retrospective Survey along with Dr. Tanya Murphy and has previously authored various articles on PANDAS/PANS in the school setting. Course Objectives: 1. PANS Diagnostic criteria and proposed underlying neuro-immunology 2. PANS Medical interventions 3. Effects of exacerbation on areas of occupation, client factors, and performance skills including school and home functioning 4. Ideas for therapeutic and educational intervention during and after exacerbations 5. Resources for families To learn more about this presentation and to register, please visit http://www.learningpartners2.com/main/content/courses/pans/pans.asp CEU credits are available for this event. The brochure is here: https://docs.google.com/file/d/0B09WaOQyk4wVMU5pZU1nS3ptbnc/edit?pli=1

For those who've been helped by the raw data from 23andme or for those who would at least like the option to test in the future, please consider signing - only 460 more signatures needed! https://www.change.org/petitions/fda-don-t-ban-marketing-of-home-genomics-kits-like-23andme

Thanks Dedee!

Hope - when you find your old post, consider pinning it under "Helpful Discussions for Lyme" at the top of the forum for future reference. There are also other articles on the WB pinned there.

You know from my PM that I love Dr M and hold him in high regard. I'm so glad you were able to get in to soon! (Mama2Alex - Dr M is an LLMD and has many PANS kids - studied under Dr J, had his own lyme treated by Horowitz - helped my kids enormously when other Pandas docs had hit dead ends and said lyme wasn't an issue when in fact it was a huge issue for us). He is also on a Pandas advisory board with dr B, Dr O and Leckman, with Swedo calling in for monthly meetings being sponsored by the state health dept. Dr M is about as good as they come. My personal experiences with CCMC have not been great. They roll their eyes at "moms who google too much" and are very conservative in their willingness to treat anything other than their unique domains/specialties. If you go in asking about Pandas and lyme, they will cut you off. Early on, our (former) pedi sent us to a neurologist (now retired) who patronized me and instead wanted to put my DS (who had just turned 6 at the time) on respiradol or haldol and refused to consider Pandas at all. You can go if it makes you or your SIL feel like you've been open minded and considered all angles, but I'd be shocked if you were happy with the outcome. At least wait until tomorrow's appointment and see how you feel then. Please let me know how the appt goes! Oh - and Yes, there are more than just strep and lyme that can trigger neuropsych symptoms - bartonella, babesia, ehrlichiosis, toxoplasmosis, several viruses and numerous nutritional deficiencies/methylation issues. But Dr M is well-versed in the full range of possibilities and isn't married to any single answer or protocol. He approaches each patient as a clean slate and follows the body's clues, not some preset notions.

You may want to contact Dr Cunningham and get her take, but my understanding is that her panel can also come back positive when lyme, not strep, is the trigger. Some strains of strep have an outer protein on their cell surface called an M protien. Lyme spirochettes share this M protein and if memory serves, some cells in the human body - cells on heart valves and cells in the basal ganglia - have very similar looking M proteins. This is what might cause the autoimmune reaction of molecular mimicry. So what your Cunningham results will tell you is whether the body is making auto-antibodies that target on of 4 neuronal receptors in the brain - D1 or D2 receptors, anti-lysogangliosides or tubulin. It also measures one kind of inflammation marker called a cytokine - specifically the cytokine called CaMK II. These markers tell you whether the neuropsych symptoms you're seeing could be auto-immune. But they do not tell you what type of infection is causing the body to make these antibodies against itself and its own receptors. It could be strep, or it could be lyme, or it could be some other infection. If the Cunningham results come back positive, you'll know its PANS but your treatment options will be similar to what you've already done for lyme - long term, combo antibiotics (hopefully your LLMD has done combos of abx and not just one type at a time. If he hasn't, this could be the cause of the relapse). Prednisone probably wouldn't be an ideal option if there's a possibility that lyme is still in the picture. Some Pans/lyme kids are helped by IVIG. Others have a hard time handling the sudden powering up of the immune system - it caused a huge herx for my son when he had IVIG prior to our discovering lyme. Those of us who have kids with lyme have generally followed ILADS treatment protocols and slowly gotten our kids well. If your son has been on abx for 3yrs, I'd test for strep (ASO and Anti-DNase B blood tests) but a lyme relapse sounds worth exploring, regardless of the Cunningham results. The Cunningham Panel doesn't mean that strep is your culprit. If you suspect a virus, antibiotics wouldn't help. Have you explored viral treatments with your LLMD? Have you done a stool test to see what, if anything, is amiss in the gut? Also, depression and bipolar symptoms can be caused by nutritional imbalances in a process called methylation. Methylation is who the body takes raw ingredients (the B vitamins, minerals, other food nutrients) and converts them into neurotransmitters. If you have genetic mutations that prevent the "methylation genes" from working properly, you can become deficient in various neurotransmitters. When the body has a major chronic illness to fight (like lyme of recurrent/chronic strep), it has a limited amount of physical resources available. If it needs to divert resources like vitamin D, zinc, etc toward the immune system, that means it has less of those nutrients on hand to synthesize neurotransmitters. For example, Vitamin D is used in bone development, to aid the immune system, to regulate sleep cycles and to synthesize dopamine. If the body has to redirect its D toward the immune system, you could see disruptions in sleep or dopamine (e.g. depression or anger) because there isn't enough D to go around. So if there's any sort of chronic infection, or if a less than perfect diet prevents the body from recovering from nutritional deficiencies caused by an illness, you can see neuropsych symptoms even after the infection is under control. And simply taking a multivitamin won't fix things. When you have genetic mutations preventing smooth sailing, you need specific forms of vitamins that will bypass the mutation roadblocks in your unique chemical plant. I've seen huge improvements in my kids' symptoms and behaviors since addressing methylation issues - even after chronic infections were addressed. So I hope the Cunningham Panel gives you a better sense of what's going on, but realize it's the tip of the ice berg. The good news is that there are multiple paths you can take to get your son back on track.

Dee - can you send me the DAO snp rs id#s Sterling uses? I could then just look them up in the raw data.

From what I can tell from a 10 sec. look, bethanechol stimulates certain choline related channels. If it doesn't help, or help for a long time, maybe look into a choline supplement. DD is using citicholine (started 2 weeks ago). Supposed to be a nootropic and an intermediate that turns into phosphatidylcholine. Jury is still out but as I said, her itchiness and allergy symptoms are decreasing, without the use of antihistamines. But won't know long term results for another month or two. Just something to consider...

Well, I figured this would be a swamp and I also figured the majority here would have undermethylators. Sigh. Like every neurotransmitter, even our nemesis glutamate, none are pure evil. They're all necessary. It's just about balance. I'd always ignored the discussions about Histamine receptors because they never applied to DS and while DD has high histamine, hers was under control. When I saw these TS studies, it made me realize that the very cycles that were affecting DD could also be affecting DS - in the exact opposite ways. So I went on a google fest looking for ways to increase histamine and of course, the majority of ink is spent on how to decrease it. There are histamine supplements but I hesitate on that - not sure it's a matter of adding more histamine. Histamine is methylated into two components - histadine and glutamate. Certainly don't need to be adding more glutamate. What I want to focus on is that road junction where the body decides how much histadine it can make and I'm just not sure that adding more of the raw ingredient is the right place to focus. That's what I'm hoping someone can help me with. There are 4 types of histamine receptors, as far as I can tell. And things like Pepcid and zyrtec seem to work by blocking particular receptors, rather than actually reducing the raw supply of histamine. I "think" quercetin and lutein act upstream, actually reducing the amount of histamine released by mast cells. But all these things are reducers in one way or another. How do you upregulate the release of histamine? Niacin does this briefly - that's one reason why you get a "flush" from it - it's the small capillaries releasing histamine and prostaglandins (something else I need to learn about). But once that histamine is released, you've temporarily depleted the supply. I need to figure out how to increase the supply - but at the right point in the cycle. Not by necessarily dumping more raw material into the pot and hoping it gets sorted out correctly. Where is the roadblock? This is, I think, where the tic is originating. Walsh, Pfeiffer & co. are vague on this, as they are on many specifics of their work. One one hand, I'm amazed at how insightful they were 40-50 years ago and how on target their basic theories are. On the other hand, Walsh's work continues to be based on general symptoms and forces you to put yourself into one bucket or the other (under or over methylator) when in reality, you can be an undermethylator at one point in the chemical highway but an overmethylator at another point and knowing your gene status at these various junctions can be really informative. This is the piece I'm searching for. I can't throw spaghetti at the wall to see what sticks and add x, y, and z. when 23andMe and my own experience tells my that too much x and y send DS into orbit. I need some help identifying what x, y and z are and then I want to systematically adjust one at a time. So far, it "seems" that increasing "folate" (and Pfeiffer uses this term without recognizing that different forms of "folate" can have major differences because MTHFR wasn't well studied back then) would be helpful, along with the right form of B12 and some niacin. But this needs to be done in a way that doesn't add too many methyl donors b/c DS is already an overmethylator (thus DS needs to avoid SAMe like the plague even tho it plays a role in histamine regulation). I think this weekend's experiment will be to add some folinic acid and add some additional niacin to DS's mix. I'll keep you posted... Nicklemama and Peglem - just an fyi on the antihistamines - switching now to a story about my daughter. She has MTHFR +/- and terrible allergies. So she's taken Zyrtec and various antihistamines her whole life. Three times now we've had severe reactions because of antihistamines. When she was 4, the minute clinic dr. told me her flu wasn't the flu but an allergy and I should give an antihistamine. She then spiked a fever and antihistamines can lower your seizure threshold. She had a febrile seizure as a result. Then when she was 7, she had a cold and I was dosing cold medicines every 6 hrs as directed - but for many days in a row. It provoked an anti-cholinergic response with horrible tremors, spastic movements, spaciness. We ended up needing an EEG a few weeks later (which was thankfully normal). But I realized I could never again rely on steady doses of cold meds. Then recently, she'd been taking a nightly Zyrtec for fall & winter allergies and she started having tachycardia (150 bpm) for 2 hrs at a time and having whole body tremors. This would happen several days in a row, several times a month. When it finally dawned on me that it felt similar to her anti-cholinergic episode from the cold meds, I stopped the zyrtec and the symptoms went away. Googling taught me that antihistamines block choline receptors and can provoke tremor/seizure like symptoms. DD also did a spectracell test that showed a choline deficiency. I've started giving her choline (100mg daily) and surprisingly, the body itchiness and allergy symptoms that were prompting me to give her zyrtec in the first place have stopped. So it seems she was 1. already deficient in choline and then 2. I was blocking choline receptors and this was depleting the system even more. So peglem - Allie's response may have something to do with a choline deficiency. To anyone using daily allergy meds - just a word of caution. Indefinite daily dosing can trigger some adverse effects that look like tremors and POTS. Check choline deficiency as a possible issue.

This crossed my radar yesterday: In a study published Wednesday in the journal Neuron, the researchers say a genetic mutation that blocks histamine also leads to Tourette syndrome http://www.ctnow.com/health/connecticut/hc-tourette-0109-20140108,0,6843310.story A second study, published last summer, follows the same family identified in the above article Journal of Medical Genetics Support of the Histaminergic Hypothesis in Tourette Syndrome - Association of the Histamine Decarboxylase Gene in a Large Sample of Families http://www.medscape.com/viewarticle/813254_4 The theory is that people who suffer from tics may have histamine levels that are too low. You need proper levels of histamine to support the methylation cycle. Pfeiffer and co., in their limited knowledge of the 70s, say the same thing - overmethylators tend to have histamine levels that are too low. For reasons I cannot yet wrap my head around, increased folinic acid - and possibly niacin - seem to be involved in the solution. Any geek parents with ticcers with 23andMe results care to delve into this with me? I could use a sounding board. An eye tic is DS's only remaining issue - and it ironically appeared last summer when I adjusted his supplements based on 23andMe results. Prior to that, he'd been tic-free for almost 2 yrs. Yet, the change in supps brought all around goodness in most every other way. So I think I'm just missing a small puzzle piece and a geek pal or two to help me out. (DS has normal MTHFR).

We see an awesome integrative LLMD in central CT if you're able to travel that far. He uses abx/conventional treatments, herbs, ART testing, explores all sorts of concurrent issues, understands & treats Pandas/Pans. He does not use homeopathy exclusively to treat lyme but his wife, in the same practice, is a homeopath and he himself uses homeopatic remedies to support the body. He of course has a waiting list, but PM me if you want his info.

You can also take a look at this e-booklet from Latitudes http://latitudes.org/store/should-you-consider-pandas-ebook/ It goes over blood tests, clinical diagnosis, treatment options, etc. It's sort of a Pandas 101 for Beginners.

I've not used l-theanine or green tea for my DS but I have used it for myself (tho I don't have ADHD). I liked how it made my brain feel - a little more alert but not wired the way I'd get if I had too much coffee. It wasn't dramatic but I could feel a difference on days I had 1-2 cups of green tea. However, I found after awhile that that became my new "norm" and to get that feeling back, I started drinking 2-3 cups/day. In a sense, I became a little addicted to it. I think its helpfulness may depend on the severity of the ADHD. Based on DS's 23andMe results, he takes phosphatidylserine (found on amazon as PS100) . Phosphatidylserine and its partner phosphatidylcholine are both considered helpful for ADHD and I have to say I've seen improvement in my son's focus and ability to stay organized. On a regular day, he takes 100mg. If he's in a flare, he'll take double this amount - one 100mg capsule in the a.m. and one at dinner so he can focus on homework in the evening. I've toyed with also adding l-theanine, but haven't - other things always seem to take priority.

I could blabber on, let you know I feel your pain...but the best advice I have is to get on Netflix and rent "Meet the Robinsons" A little boy wishes he could go back in time to change one event, so that his life would be happy. Instead, he ends up finding out that because of his hardships in early life, he goes on to accomplish great things and finds his "clan". At the end, he's brought back in time and is given the chance to change that one event - and he chooses not to. My favorite line in the movie is "Congratulations on your failure! May it lead to many successes!" My kids didn't understand everything in the movie, but they have that phrase memorized! I promise that while it won't be like opening a can of "insta-Friends" for your son, it will help you make that small mental shift and will make your current funk more bearable. (on a more practical note - my kids have found online Minecraft to be a great place to be with like-minded "friends" when their school friends let them down. it gives them a clan and they sit side by side, each on a PC - it's actually made them like each other (sometimes))

If you don't yet know your MTHFR status, I'd vote for doing 23andMe testing. Even tho the FDA has made the co. stop providing its health care reports, those reports weren't particularly useful anyway. The real value is in the raw data, and you're still able to get that. For $99, you get an enormous amount of data, even tho this represents only 1% of your DNA. The FDA isn't questioning the reliability of the raw data. It's saying that when the 23andMe health reports tell people "you have a 1.6x higher chance of developing heart disease" the co. can't validate that risk rate. In fact, when a reporter ran her spit thru two different companies - 23andMe and one other, one told her her risk of xyz disease was 1.6x higher and the other co. put the risk at 1.2x higher. Both companies agreed that her 123 gene had a heterozygous mutation (so they agreed on the raw data) but the FDA fears people will go into a tizzy and take drastic steps (i.e. mastectomies) based on that report that says your risk is 1.6x. The raw data is what you're after and there doesn't seem to be an issue in that arena. That said, do realize that genetic testing does open some potential for issues securing life insurance - NOT health insurance. In the same way having a history of heart attacks puts you into a higher risk pool with higher life insurance premiums, so could having certain genetic tests results. It's possible that in the future, life insurance companies will ask not just about history, but about genetics. But then, they may require the tests at some point in the future for all applicants, whether you get one done now or not. I just mention it as something to be aware of. Ok - so if you don't yet know your status, and you decide to do 23andMe testing, here are the steps http://latitudes.org/forums/index.php?showtopic=3928&page=2 (see Post# 18). From your lab results, it wouldn't be surprising if you have an MTHFR issue and the labs are showing the results of a folate trap (folic acid being consumed but the body not being able to convert it into usable methylfolate or to use methyB12 to convert homocysteine into methionine and then into ATP for cell energy). If you have high homocysteine, you may also have a CBS gene mutation to work around. But don't guess! I assumed my DD got the mutation from me and started taking the same supplements she needed and it turns out I needed the opposite. Her supps ended up making me depressed and cranky. When I switched to the ones right for me, I felt worlds better. So do the test. For the other issues, they may or may not be affected by MTHFR but could also be a result of other genetic/methylation issues. MY DD has MTHFR +/- and also had high TSH (in the 5 range - nothing hugely out of whack) without any other elevated thyroid numbers. Treating MTHFR did not change this. But doing small steps like hydration, CoQ10, and addressing some nutritional deficiencies (choline and some minerals) has helped. I've not found any quick fix for adrenals. But...you can take your 23andMe raw data and look for genes associated with adrenal diseases and then see if those antibodies warrant further investigation. On the inositol - my friend just told me it's a methyl donor. So it'd be best to know your tolerance for methyl donors, and 23andMe will help you figure this out. (You need to look at MTHFR, COMT, VDR Taq, MTR, MTRR and MAO-A genes to get a handle on this question). Personally, I didn't find inositol all that helpful for either kid - one with MTHFR who needs methyl donors and and one who doesn't tolerate methyl donors. BUT - treating my DDs MTHFR issue made an enormous improvement in her mood issues - anxiety, bipolar mood cycling, irrational anger, depression...So once you find and treat methylation issues, you may find the inositol unnecessary anyway.

I know it will sound like splitting hairs, but the compulsion you describe sounds more like OCD than a tic. I tend to see a tic in the same category as the urge to yawn. you can suppress it for a time, but you don't feel better until you give in and yawn. Although you can "control" it, it's a "physical" need as well as an emotional one. An OCD compulsion on the other hand, feels, to me, more mental and far less phsyical, like "I really, really like having my rug freshly vacuumed, with the nice vacuum lines and no dog hair. It will cause me mental distress to see footprints and dog hair, but not physical distress. The reason I make this distinction is that I wouldn't put the urge to poke someone into a category of "he can't control it". That's not fair to your daughter. I think you recognize that but I emphasize it, because I think that your first step is to offer your son some CBT tools, but then in fairness to your daughter, be prepared to put consequences in place if he doesn't use those tools. Physical acts on another person cannot be put into the category of "he can't control it." He needs to make a choice - give in to the OCD compulsion and suffer the punishment for violating his sister or tell OCD "no". Normally, I would never tell someone to punish a child for giving into OCD, but when it intrudes on another person's body, a line has to be drawn. Your daughter has rights and needs too. The disease cannot supersede all else. She needs to know she comes first sometimes and this would be one of those times in my book. So - tools. If you haven't read "What to Do When Your Brain Gets Stuck" by Dawn Heubner or "Talking Back to OCD" by John March, get those two books. Very, very helpful. Heubner outlines the CBT/ERP options - 1. Do the Opposite 2. Delay the act 3. Walk away 4. give OCD a limit 5. change the ritual 6. Make it funny #2 and 4 don't seem appropriate in your case. It can't be ok to only poke your sister 3 times instead of 5. Or delay the urge but still give in to it eventually. So focus on #1 and #5. When he walks past his sister and has the compulsion to poke her, he needs to instead poke himself. Or snap his fingers. Or stomp his foot. He needs to replace the poking compulsion with a different action that doesn't involve your daughter's body or personal space or belongings. Next, whatever he replaces it with needs to change often, or the new ritual will take hold. He needs to constantly catch the OCD thought and make a choice that he isn't going to let it be the boss. He can give in for the moment, but then within a few days, he'll need to say "today we snap fingers, not stomp. I get to decide, not OCD". Over time, by exercising his own voice over OCD, the OCD voice gets weaker. This is where I found Talking Back to OCD very helpful, because it clearly puts responsibility for talking back to OCD onto the child not the parent. Only your son can control his actions. And therefore, if he chooses - and it is a choice - if he chooses to submit to OCD instead of fighting back (and it is REALLY hard - don't get me wrong) - then as a parent, you need to protect your daughter's rights and have consequences. You're not punishing him for having OCD or even having to succumb to a compulsion. I get that sometimes, it's just impossible to not give in to the OCD. BUT - he needs to understand he has control over his body and when an OCD compulsion pops into his head, he has control over how he manages that compulsion. He can switch the need to poke into an action of tapping his foot or snapping his fingers. I'm not explaining myself well and hopefully others who've been to Rothman can offer better ideas. But I found that my own mind frame needed to change and the two books I mentioned helped me do that. For the sanity of your daughter, you and your son need to see him not as a victim (he can't help it) and see him instead as someone who can become empowered and fight back. Pans requires proper medical treatment to make the OCD go away, but ERP tools should still be used to keep that "victim" mindset from allowing OCD to rule the roost. You can also make it funny (#6). When he passes his sister, tell him to make a funny face (at OCD, not at his sister). Tell him to "do the funky dance" or do some strange series of actions that make hm look like a total goofball. Make OCD the brunt of the joke. Have him mentally say "yes, OCD, I'll move my body like you insist, but I'm going to do it in a way that shows just how ridiculous your silly superstitions really are". On the medical side, you may need to change antibiotics or add a second one. Sometimes, a combination of two antibiotics is more effective. Many abx are extra-cellular. They work by eroding the outer membrane of the bacteria. A few, like azithromycin, are intra-cellular. They work by getting inside the membrane of the bacteria and destroying it from inside out. Sometimes, using both strategies at the same time, helps a weak immune system stem the tide and gain the upper hand. It's a common strategy in lyme disease because the lyme bacteria can change forms as a defense mechanism and using both extra and intra cellular abx at the same time gives it less defensive strategies. Also continue to swab him for strep or consider a T&A. Good luck!

This? http://www.ocfoundation.org/uploadedFiles/MainContent/About_OCD/Expert_Opinions/IOCDF%20Expert%20Opinion%20-%20PANDAS%281%29.pdf

This goes through the whole list of tests and general treatment options http://latitudes.org/store/should-you-consider-pandas-ebook/

I don't see you mention any strep tests. Has she been swabbed for strep or had antibody titers run?

Sent you a PM.

In addition to the advise above, see if you can use Carnation Instant Breakfasts or Ensure or a protein smoothy. Also, it is essential that your daughter get vitamins and minerals into her body. Nutritional deficiencies can cause neuropsychiatric symptoms and you could quickly spiral into more than just infection-triggered issues. If she can't/won't swallow pills, look online (Vitamin Shoppe, Amazon) for a liquid multi-vitamin. This can't be negotiable. Dr James Greenblatt at Tufts also feels that zinc deficiencies can contribute to anorexia http://jamesgreenblattmd.com/ It sounds as tho her eating issues involve OCD. You may find helpful ideas under the "Helpful Threads for Pandas" listed at the top of the Pandas forum http://latitudes.org/forums/index.php?showtopic=3928 Not sure where you're located, but in addition to Dr B and Dr O in CT, there's also Dr M just south of Hartford. He's a lyme specialist who treats a number of Pandas kids and is on the CT Pandas Advisory Board along with these two other doctors. Like Dr B, he has a waiting list, but gives priority to children and in some cases, parents have been able to get in w/in weeks if you put your name on a waiting list and can take a last-min opening. PM me if you want his contact info (to PM someone, look in the upper right corner of your screen just under your login name - click on the drop down menu for options. Or click on my user name within this post and then select "send me a message")

Kath - you know you and I are always on the same page when it comes to this stuff. Ironically, I just had a similar OMG moment this afternoon about DS and B12 and his tics. I absolutely, positively believe that small out-of-balances in certain vitamins/minerals can cascade into many of the symptoms I've come to associate with PANS. Even tho us northerners are all conditioned to supplement with D3 in the winter, I think you're on to something with your experiment. There's some discussion of Vitamin D and dopamine under the VDR Taq and COMT sections of the heartfixer doc http://www.heartfixer.com/AMRI-Nutrigenomics.htm and probably Yasko's book. You may come across something there that sparks ideas or supports your thinking. Time and again, I keep learning that what's "supposed to be" good for everyone isn't always good for my kid. Also, while there may not be a connection, your whole copper/zinc journey? Copper upregulates the MAO-A gene, which degrades epinephrine, serotonin and dopamine. D synthesizes dopamine. Coincidence that the two vitamins/minerals on your radar both involve dopamine synthesis and degradation? Pat yourself on the back for this "find" and please keep me posted on how it goes. (BTW - can you PM me your email again? I think I accidentally deleted while cleaning up my inbox).

You and I have brainstormed before and I wasn't able to offer any ideas then, and probably can't now. I know you have a good handle on your son and you're persistent enough to have looked into lots of angles already. But I'll toss this out FWIW - you used an immunopressive therapy - HD IVIG - and saw no gains. You used a more dramatic treatment that should be very effective against an autoimmune disease and have seen huge regression, perhaps a consequence of removing not just auto-antibodies but also normal antibodies that were fighting some chronic invader? You mention next moving to something that destroys B Cells. But every time you've used a treatment that is meant to hobble an immune response, your son hasn't improved. Maybe this isn't about squashing the immune response but instead, maybe there's an unidentified thing that's keeping the immune system in overdrive - not in some "misbehaving" or "misguided" way (as in autoimmune) bit rather in some "I know what I'm doing, I'm trying to fight this invader" sort of way. My son initially improved from Pex but perhaps it was because he was 6 weeks post-T&A after a year of a chronic infection in his tonsils or adenoids. He was already showing signs of calming down pre-Pex. But 6 weeks post-Pex, he ramped up again and I couldn't figure out why. I blamed a BFF who had back to back strep infections, I blamed viral infections, I was so certain his was a strep-only situation. So we went to IVIG and that made him even worse. It was only then, when his body continued to not "follow the script" of an auto-immune condition, that I started to consider lyme. It was only after my own paradigm shift that we started pursuing treatments that got to the crux of his problems. I'm not suggesting your son has lyme. But I am asking- what if your son's issues aren't autoimmune? What options then open up to you? As Cobbiemommy says, the body's response, both positive or negative, is informative and can guide future treatments. A serious regression after removing the body's antibodies would make me really question the use of something that kills B cells. I wish I had something more constructive to offer. A "try this" sort of post, instead of a "don't do that" opinion and Monday Morning quaterbacking. But the only suggestion I have in that vein is to maybe consider contacting Theo Theohrides at Tufts http://sackler.tufts.edu/Faculty-and-Research/Faculty-Profiles/Theoharis-Theoharides-Profile He's a mast cell guru. I hope your son catches a break soon! He sure deserves it.