LNN

I think you end up having to test for other "signs" - e.g. we tested C3a and C4a immune complexes, which are suggestive of lyme. You can also do PCR, as they did in the study, plus the new tests I mentioned. Still, I think it comes down to doing what works. If you treat for lyme with say, combo abx, and your kid gets better, do I care whether it was lyme or bartonella or myco p.? If I treat for Pandas and my kid doesn't get better, is it helpful to test for additional PANS infectious triggers? To look at methylation with genetic testing? To look for pyroluria? In my case, yes, it was worth doing these additional tests because it brought us missing pieces. But it's not everyone's answer. With the exception of the new test, the testing stinks. Just as it stinks to have no definitive test for Pandas. My kids both have elevated Cunningham numbers but one never had strep. Where we are with the science behind all of these diseases is so archaic that it comes down to pursing a treatment that brings results. Not arguing here. I think there are unfortunately way too many unanswered questions and way too many sick kids.

I do think this study raises an important point - one that the forum has been aware of for awhile. This man's positive western blot was done shortly after his second IVIG, with a half life of donor antibodies being 3 weeks. A follow-up WB two weeks later showed a slight decrease in positive bands. We've always advised parents to wait as long as possible - 8 weeks? 10 weeks? before doing a WB if they've done IVIG. I don't think any of us want to treat our kids for a disease they don't have. Had the forum been as lyme-aware when I was at this point, I would've been happier to know about Igenex before we did IVIG instead of having to wait 3 months afterward. I think it's one reason I'd recommend it to someone who had outlier symptoms or non-strep triggers before they did IVIG. There is also a new lyme test that Philamom has posted about on the lyme forum that does not look for antibodies but instead is able to culture spirochetes from the blood sample. Similar to a strep culture. If you see a spirochete growing in a petri dish of your blood, not much question about whether you have lyme. And it wouldn't matter whether you'd had IVIG or not.

My DD6 did a 2 week trial at 600 mg 1/day. Couldn't say if I saw any changes one way or the other until week 2, when she started to get manic and mean episodes. After researching, found that NAC is mucus thinner. It can be used to erode biofilms. Tho her medical issues are clear as mud, it is very likely she has some sort of chronic infection - possibly/probably lyme? - and biofilms are likely part of her issue. We weren't ready to do any sort of cyst-busting for her until we did methylation stuff to get her healthier. So we stopped the NAC. However, I would consider trying it again when the time comes. Let me know how it works out for you.

Em - tried to PM you but couldn't.

High B-12 isn't really considered a problem, so I wouldn't lose any sleep over it. Some doctors feel you can't have "too much".

If you follow up on Nancy's suggestion and get any smug or dismissive reply, do let us know. Between here, the Pandas FB folks, the Maloney FB folks - she'd get quickly acquainted with many of us. I agree with Nancy that this kind of publicity isn't "good" in any way. But the "good" is the fact that the Pandas community is so much larger and better organized than it was a few years ago, that we'd actually be in a position to use a collective voice to stop this kind of denigration and disinformation. So I think it would be good for you or many of us to set her straight. I'm certain a creative writer can come up with more appropriate examples without impacting her message.

I don't have any insights on the IgG levels. But have you tested plasma zinc levels and for KPU? I have been totally amazed at how much healthier we all are since starting KPU treatment for the kids and me. My son's IgG levels were always poor side of normal, but he caught every cold and shared it with DD and me. The only one who never got sick was my husband. Since adding zinc for KPU, 180 turnaround. metals might also suppress the immune system. Just thinking out loud. No expert on PID by any means.

I'm sorry I don't know the answer to your question. I only wanted to mention that high copper levels can cause bi-polar-ish symptoms, so it may be worth checking copper levels prior to moving to another medication. FWIW - my daughter is fighting Epstein Barr (closely related to mono) and she has episodes of rage and irrationality. Her copper levels are high and we are using zinc to bring it down (zinc and copper move in opposite directions, so if you supplement zinc, copper will drop). It isn't without drama, but her numbers are moving in the right direction. Best of luck - sounds like this is a very hard situation for the whole family.

It sounds like you're really leary of using Core without a dx. What are your concerns? If it helps any, take a look at the ingredients in Core and compare it to Vitamin Water http://stores.homestead.com/BiopureHealingProducts/Detail.bok?no=80 Note - this list assumes you're taking 4 capsules. When you start and for the first month, you only take one and then build up as tolerated every few weeks, sometimes pausing or backing down for a time. So when you look at the doses, divide by 4. Also remember to add in whatever amounts of zinc et al may be in the multi, but realize the zinc and B6 are probably different forms than what's in the multi.

Before my son had Pandas, prednisone (orapred is the same thing, but tastes better) would make him super hyper. Since Pandas, prednisone calmed him way way down. So don't freak over it. Just be aware. One mom on the forum saw a very rough response. But others think it's amazing. A 5 day burst should be fine. If you go on a longer "taper", your body stops making its own stuff after about 10 days, so you can no longer just stop taking the prednisone. You need to taper down slowly so your body has a chance to re-start it's own factory. (it doesn't make prednisone, but something similar - my memory is rough on this detail). Tics were a huge symptom for us. Prednisone helped, but it didn't get rid of them entirely, even on a 30 day course. Everyone is different. FWIW, my son did better on augmentin than zith. For others, it's the opposite. You just need to experiment. I know the tics can be really upsetting. It's such a public display that something is really wrong with the brain. But I have to say, the OCD, especially the OCD that tells a kid to not eat, can be way worse. I HATE the tics, but I'll take them over OCD any day. You sound like you're in that awful place we've all been. It feels like it's all on your shoulders and if you don't do something immediately, you're completely and forever screwed. You're not. It will be ok. I made tons of mistakes, missed tons of coulda-shoulda-woulda opportunities. It worked out and my son is in the best place he's ever been in his life (knock wood). Take a breath. You're doing fine, even if it doesn't feel that way.

A 504 is an education plan. There are 2 kinds of plans our kids can qualify for that make the school legally required to accommodate their special needs. Section 504 of the Rehabilitation Act and a IEP (individual education plan. A 504 means the school has to make accommodations within the classroom but the child doesn't need changes to the general curriculum. An IEP gives you both classroom accommodations and adjustments to the curriculum. Both will require a doctor's letter giving a diagnosis and stating a need for accommodations (but the doc letter doesn't need to list what those requirements are). Lots of us have kids who have these plans in place. My son has a 504 that allows him to go to the bathroom as often as he needs to, lets him have a water bottle at his desk, chew gum, take assessment tests like state mastery tests in a separate room in an untimed setting, extra days to complete assignments, special seating consideration (away from daydream-inducing windows) etc. My daughter (1st grade) is about to get a 504 (as soon as I can get the doctor to actually mail the dang thing!) because she has a current epstein barr infection (like mono). It will state that she should only go to school for 4 hrs a day. This means the school will need to figure out how to change her schedule so that afternoon subjects are still covered while she's in school. So maybe during morning snack, a teacher's assistant will take her aside and give her a math lesson or the teacher will make sure her individual reading instruction is done while the rest of the class is at recess. At the moment, I'm picking her up at noon anyway because she's just too tired if she goes all day. But she's missing classroom instruction, because the school isn't legally required to accommodate her illness until they get the doctor's letter. For more info, you can check out http://www.wrightslaw.com/

Core has a blend of zinc. B6, molybdenum, etc in certain ratios and in specific forms that are supposed to be "best" for pyroluria. I asked our LLMD about using something other than Core to save a little $ and he really felt Core was the best thing for this point in time. So if you're looking to supplement with zinc and B6, I'd go ahead and use Core over something else. You work up to 4 capsules but you could just do one cap for now. With what she's got going on, it's very possible to extra zinc/B6 would help her. You can get methyl B12 - all the docs seem to feel you can't get enough B12. But DH had a weird sensation when his integrative put him on it and he stopped after a few days. So who knows. My family never seems to follow the script or be "normal". There's a site http://www.nsf.org that lists vitamin brands that have been certified. Helpful for picking brands once you get to that point.

Hyperactivity is very common. You may want to grab a video, as some things we'd label as bouncy could be considered choreiform movements by a neurologist. You can also search YouTube for video examples of choreiform movements (it is a little different than chorea but even if you can only find videos of chorea, you'll get a general idea - chorea is just more severe/pronounced). You can also have your DD put her arms out straight in front of her. As her arms get stressed/tired, you might see her fingers start to move up and down like she's playing the piano. This is a very common choreiform movement seen in Pandas kids. As for coping with all this energy - have her chew gum when doing school work. Give her a squeeze ball or eraser to hold in her free hand while she writes or thinks. If you have one of those exercise balls, let her sit on that for homework time or tv watching. Let her stand for meals. If you don't yet have a 504, ask the teacher to let your DD have some sort of manipulative (an object or scrunched piece of paper or some sort of fidget item) that she can hold while doing quiet work, particularly reading. For ADHD kids, their brains actually focus better when their bodies are multi-tasking. It seems maddening to us, but to them, action brings focus.

I believe MommaKath found a DAN in her area who is willing to take over her son's IVIG treatments locally, based on Dr Bs previous treatments. But yes, it's the local doc writing the orders. You may want to PM her. I don't believe she logs in on a daily basis.

A great idea! We haven't done this, but CYP-450 plays a very important role in how the liver functions and as PowPow said, it tells you whether you may need more or less of a particular medication. I know this talk about genetics may sound new agey. But it's an emerging field called epigenetics, where you individualize treatment plans - much better than throwing darts at a problem.

There are two ways to test for yeast. One is a spit test - before getting out of bed in the morning, you spit into a glass of water and watch - maybe an hour. if you see stringy stuff or cloudy water, suspect yeast. if the saliva just dissolves, probably no yeast. The other way to to do a blood test for candida albicans IgM and IgG. You can also do a poop test to check for many gut bacteria - including but not limited to yeast. But it takes time for the results, so more for chronic gut issues IMO. As for metals, there is no "good" way to check - just degrees ranging from way unreliable to kinda sorta reliable. The least reliable is a blood test. Heavy metals only stay in the blood for a short time - they can be detected immediately after a large exposure - let's say you play with a broken thermometer. Then you'd see blood levels of mercury right after that. (But then, you'd already know you'd been exposed, so you wouldn't need a blood test). The second way is from urine tests. Lots of controversy here, with "conventional" medicine (the people who tell you there's no harm from thimerasol) totally dismissing "provocation" urine tests and integrative medicine saying it's the only way to see what's in there. The basic idea is you do a urine test of regular urine. Measure it for metals. This is your "baseline". Then you take a metals chelator - usually DMSA, but you can also use DMPS or EDTA depending on which metals you want to "pull" out - and then do a second urine test to measure what the chelating agent pulled out of the soft tissues and drew into the kidneys for excretion. Some practioners skip the baseline test, arguing that if a chelator can pull stuff out of the soft tissues, then metals are there. No need to waste money on measuring prior to that. You need to research and decide which you feel comfortable with. The final way I'm aware of is hair testing. You snip a certain length of hair for analysis. Hair is like rings on a tree. It gives you a timeline and can show metal excretion. The argument against how reliable hair testing is - or urine either - is that sometimes, if your detox pathways aren't functioning properly (which is often the case with chronically sick people and is at least in part the very reason they're sick), then you can have metals in the soft tissues 9esp. the liver and brain) that the body isn't strong enough to excrete. So you can have a metals problem that doesn't show up in a urine or hair analysis. For this situation, some argue that you should do a chelation protocol - either by taking DMSA et al on a schedule (not every day - generally twice a week, every weekend or every other weekend, depending on whose protocol you feel comfortable with) or by supporting the body's own detox pathways (liver detox like milk thistle, bowel detox with clay or charcoal or chlorella, using antioxidant supplements like glutathione or alpha lipoic acid, supporting the immune system to battle metal-hoarding microbes by taking zinc/B6). Once the body's own detox conveyor belts work properly, the body will naturally chelate. There are entire forums devoted to various protocols. If you want to pursue, PM me and I'll send you links. In the autism, chronic fatigue and lyme worlds, it's widely believed that metals play a role in chronic illness. But like may things in these worlds, testing/proving/measuring these things can be very difficult. Clinical symptoms then become part of the analysis.

Theralac here too. Initially, we did Theralac 5x/wk and Truflora 2x/wk for yeast. Now, to save a little $ now that their guts are nice and stable, we rotate Theralac 2x, Truflora 2x and Jarrow Sacc B. 3x/wk. That way, they get a variety of pre and probiotics. FWIW - Culturelle never did much for us.

DS looked entirely Pandas - except for two additional things. 1. He never stayed in remission longer than 2 months and 2. he also had asymmetrical swollen gland (only left side) not associated with sore throat/strep and he had body/muscle pains - like you feel when you have the flu, except he was otherwise healthy. We kept blaming it on "exposure" since he wasn't getting strep after the T&A. Behavior-wise - entirely Pandas description Plus brain fog beyond what seemed common with other Pandas kids. So he was "classic Pandas" plus more. It was only after exhausting every Pandas treatment and still not getting sustainable remissions that we knew we had to dig deeper. If I were in your situation and had no lyme flags, I'd pursue potential methylation landmines more than lyme. Even after we pursued lyme, we still had major roadblocks. Once we found the KPU/zinc issue (DS has normal MTHFR), our rate of progress went from the Little Engine That Could to the Bullet Train. My niece may have a brewing Pandas kid and my advice to her will be to look for underlying issues first, because until they're addressed, all the abx and IVIG in the world won't get you there - or at least not nearly as easily as it would if you didn't have any methyl blocks. (IMHO).

So now you have no doubts. There's no question. I'm sure it's hard to acknowledge, but does it make it easier - to know that this could be the driving force behind the DIL and gastro issues - or do you think it's in addition to - and not the cause of - these other things?

So my niece posts on FB last night that her three y.o. presents with 3 days of sudden bedwetting, low grade fever and temper tantrums. She drags him to the pedi who initially says nothing to worry about but she insists on a throat swab - viola - strep. This is the second time in 3 months he's presented with tantrums preceding strep. Thankfully, she takes her crazy aunt (me) seriously and has Pandas on her radar. She mentioned that her son also recently dropped from 50-75% for weight/height to 5-10% and the pedi tested hormone levels, which came back low. So they have an upcoming appt with an endocronologist. My niece didn't mention what hormone tests were done or the results. I'm not up on my hormone or thyroid knowledge because it's never been an issue for us. But I know I've seen it discussed. For those who've been down this road, anything I should tell her to look into when they have their appt? What is the Pandas/endocrine link - any? Or separate issues?

Not unlike autism spectrum disorder (ASD), more cases of obsessive-compulsive disorder (OCD) and/or tic disorders are being diagnosed in prepubertal children. Also, not unlike ASD, the cause of most cases is unclear. Frustrated families seeking answers frequently think we don't care. We care. We just do not have the answers. Much debate has focused on the purported role of group A streptococcus (GAS) in causing or precipitating the so-called Pediatric Autoimmume Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS). Using objective criteria to define at least the most typical clinical constellation could benefit future investigations of etiology, natural history, and management. In this study, investigators invited participation of patients 4-17 years of age with childhood onset of OCD and/or tic disorders, attempting to enrich the study sample for enrollment of children with a history of any infection-related symptom flare-ups or a history of dramatic onset of either OCD or tics. Interviews, neuropsychiatric testing, streptococcal antibody testing, and review of the medical records were performed on 109 children. Cases were assigned as PANDAS (including requirement of at least one elevated GAS-associated antibody level) or non-PANDAS by criteria of Swedos, then additional clinical characteristics of groups were compared. Significant group differences were found, such as dramatic onset, definite remissions, history of tonsillectomy/adenoidectomy, and others in patients with PANDAS. Despite inherent limitations of the study, the description of typical objective findings of so-called PANDAS cases will help focus future investigations on subjects with a similar clinical entity. http://www.jpeds.com/article/S0022-3476%2811%2901271-6/fulltext I don't have access to the full text, but it was nice to see something in the Jrnl of Pediatrics that treats Pandas a legitimate. If anyone has access to full text, please let me know.

Response to Pandas treatments would be my criteria.

Funny - I've thought about making my own DH take some of the supplements the rest of us now take - years of chronically sick kids has left us both a little cranky! Seriously, I started taking some of the things the kids take (zinc/B6, milk thistle, methylfolate) and I feel way way better than I have in a long time (tho having DS in a good place also helps). The methylation stuff has been a game changer for us. I saw this article today and thought of you - a genome sequencer that can sequence all of your genes in one day, for about $1000 (net cost, not retail). For now, Rothberg expects research labs to be his main customers, using Proton to obtain the complete genome sequence of people with cancer or autism, for instance, and thereby elucidate a disease's underlying genetic causes as well as possible ways to treat it. The company has signed on Baylor College of Medicine, Yale School of Medicine and the Broad Institute as its first customers. http://news.yahoo.com/insight-dna-reader-bring-promise-050950236.html I'm sure it would be years away, but it makes the whole notion of larger scale gene testing - the kind Yasko does times 100 - seem less far fetched. I really think my kids will think all this stuff is so obvious by the time they become parents.

My feelings on SSRIs have changed over time. Having been through so much, I now think that anything that helps a child cope is a positive. I "medicate" my children with a zinc supplement. It gives their bodies something they can't get enough of otherwise. So how is that different than medicating with an SSRI to make seratonin more available? So I don't think you should ever feel you have to "apologize" for giving your child something that helps. My only comment is that if you are still going to pursue a medical cause for the OCD, (lyme or whatever else may seem reasonable), then go into the SSRI decision knowing you'll be having to sift through one more layer of factors as you try to figure things out. That's not necessarily a bad thing. My daughter (6) really started struggling with OCD this fall and I started her on inositol (a "natural" SSRI). It helped for awhile. But now we're dealing with Epstein Barr (similar to mono) and high levels of copper. As we treat the EBV and try to get her copper levels down, the inositol doesn't seem to be helping anymore. Is it because we need to go to a higher dose? Is it because the EBV treatment is causing a "herx"? Is it because the copper issue (which causes bi-polarish mood swings) is changing the chemistry of things - and if so, as the copper drops, does she actually need less inositol and what we're seeing - could it be an "activation" from too much inositol? I'd still have a lot of these same questions even without the inositol in the picture. But it adds one more layer that I have to sift through. So even though the OCD is ramping up a bit, I'm considering slowly tapering off the inositol just to get a cleaner picture. And that's the other consideration - you have to build up and taper down on SSRIs. You can't just stop. You need to give the body time to adjust to the decreasing doses. So it adds time to trying to sort things out. Now, I'll still say helping a child cope is a good thing. But if your LLMD appt is in the near future and if your son can manage until then, you may want to consider holding off only so you can have a better picture of how any new treatment works. But if things are so bad that you don't think you can all hold off, then I'd make your decision with a clear conscience and work through the additional "complexity" when the time comes. Just my two cents.

So happy to hear things are looking up! Even if not perfect, it sounds like you've got some tools and some overall better health to make blips much easier to handle. Very excited about your DDs response to the methylfolate. I hope it continues to be a great year of improvements!! Laura