LNN

Tindamax beat the s*** out of DS. Horrible herx reaction - looked every bit like a severe Pandas episode. We did it for 5? weekends. It was more than any of us could handle. It then took about 3 weeks for things to settle down again. The upside was that he had a great period afterward. The downside it that it was taken off the table for the time being. It did force us to look "under the hood" and started us on our road to finding out why his body can't detox well. That led to the pyroluria and the current look into methylation. A few options if things get too nutty - ask about reducing the days she's "on" and increasing the days off so her body can detox longer. Think of it the same way you'd look at chelation. A week is a looong time for a little body to be on the stuff. Many take it just on weekends. Another option is to hold off on increasing any A-Bart or herbals. Don't need to build up on that stuff if she's already having a hard time. If there's one thing I've learned the hard way, it's that slow and steady beats aggressive and debilitating every time. Hope it passes soon!

In Amy Yasko's book "Autism: Pathways to Recovery" she discusses the "myth of a magic bullet" and suggests that there are multiple issues at play in chronic illness. She states "stress+infectious agents+toxins+genetic susceptibility = health condition". She feels you need to look at each individual and what systems may be awry, then support those systems so that over time, the body can begin to work correctly again. While my kids have made progress over time by treating infections with long term antibiotics and immuno-suppressive procedures, we, like Nancy, continue to fight for 100%. We are certainly much closer now, and in my case, labs support the belief that chronic lyme remains a factor. But I have still been left with the question of why my kids haven't responded the way other kids do. Why do some kids get diagnosed with lyme that may have been there for awhile, go on long term abx, herx, and improve - yet my son herxes so severely that we have to back off? What keeps him "unwell?" In the past 4 months, we have started supplementing with vitamins and minerals. Like Nancy Fxcfxr, we're seeing similar improvements in areas antibiotics haven't been able to touch - particularly brain fog. We have also done two short doses of chelation and seen that mercury may be an issue. So in my family, Yasko's equation rings very true. I have concluded that for us, there will be no "single diagnosis" and no "magic bullet." It is going to take a broader, more comprehensive re-building. There is no single label or disease that fits us anymore. We are not Pandas, not simple chronic lyme, not simply mercury poisoned. Under-methylation seems to be a major contributor but is certainly not the only one. We are a stew of ailments and broken systems that go well beyond infections. Strep may have torn our world apart, but things were likely breaking down before then. Is it chronic? Like Nancy, I refuse to believe so. I do believe it's going to be a long haul. A slow process of re-building and like any re-modeling project, I know we'll continue to uncover unforeseen obstacles along the way. We have not had our last "oh crap" moment of discovery. But I do believe we are getting closer to recovery. It may mean my kids will forever have to take multiple pills of zinc, b6, magnesuim, methylfolate...in that sense, their systems may be chronically disadvantaged and will need lifelong support (unless they miraculously find a love of vegetables). But I do not believe their neuropsychiatric struggles are chronic. JMO.

Smarty, I have personally found more frequent/steady dosing to be more effective than letting the blood concentrations follow a roller-coaster pattern. But I've also found it impossible to manage motrin dosing around school - and it doesn't sound like your school is going to be overly helpful in that regard. We've been using Aleve (Naproxen) using a dosing similar to the one here: https://www.pediatriccareonline.org/pco/ub/view/Pediatric-Drug-Lookup/153423/2/naproxen?amod=aapea&login=true&nfstatus=401&nftoken=00000000-0000-0000-0000-000000000000&nfstatusdescription=ERROR%3a+No+local+token That way, we can go 8 hrs and make it thru the school day. You may also want to look into luteolin http://www.ncbi.nlm.nih.gov/pubmed/21631167 This is just one PubMed citation. If you search on luteolin and inflammation you get lots of hits - most are either cancer focused or way over my head. There's a supplement called Lutimax http://luteolin.com/ I was all set to buy some but S&S tried it and didn't care for it. At the time, we were going through so many supplements that I moved on. But I always keep it in the back of my mind. You may want to PM her and get her thoughts. She's mostly on the lyme forum now if you're looking for her contact info. If you decide to stick with just motrin, I'd opt for more frequent dosing if possible. Keeping the inflammation at bay seems critical for us. Once it starts up, it's much harder to re-gain control. Good luck!

Nancy, Any coincidence with starting SAMe? Laura

Karen, DS was on augmentin XR for about 6 months - we never saw any difference between it and regular augmentin. However, due to his weight (60 lbs), he could only take 1000 mg/day, which meant cutting the pill in half, which negated the time-release aspect. So the only thing we gained was an increase dosage from 800mg to 1000 mg per day. We saw more improvement from doing the combo abx for lyme. Have seen additional improvements from adding zinc/B6 for KPU and now supplementing to help the methylation cycle. We have always seen improvements for apprx 2 months then we hit a wall, regardless of what we were trying. Did Pex, saw gains, stalled after 2 months. Did prednisone tapers, saw gains, stalled after 2 months. Started bartonella abx combo, saw gains, stalled after 3 months. Now that we've added the vitamin/supplement stuff for KPU/methylation deficiencies (giving zinc/B6/magnesium/taurine and will add betaine/TMG shortly), we're seeing gains, plateau, then more gains. Have held off on any chelation (a 2 week visit from my 88 yo dad and an 8 day power outage not conducive to rocking the boat). But after seeing recent improvements, I may give the supplements more time before deciding on chelation. No harm in a trial of switching abx. Just wanted to throw out a few other things to consider as a Plan B. PVs, Laura

Stephanie, My son did suffer from myoclonic jerks and "freezing" seizures, but that's not what you're seeing in your son, so I don't know that that would help much. My DD did have one febrile seizure 2 yrs ago with H1N1, but none before or since. I'm sure you know way more about ASD issues and treatments than I do, but I found the article Nancy posted about amonia and seizures interesting. http://biologyofkundalini.com/article.php?story=TheAmmoniaHypothesis I don't know if all the info in the article is correct or not. But I found the link interesting, as methylation is my new research interest and ammonia plays a role in the cycle. As soon as life returns to normal here (just got power, heat and water back 8 days after a major northeast storm), I'll being doing a trial of betaine with my son. My gut tells me we have an ammonia detox issue contributing to our situation. It may be worth looking into. Dr Amy Yasko's work may also have something that applies to your situation. I hope things improve quickly! Laura

If this is your first flair from a tooth, I might wait on the prednisone. For my kids, the flair is worst before the tooth comes out then quickly resolves (w/in 1-2 days) after it's out, once the gum heals. Try giving him manipulatives to keep his hands busy - a squishy ball, a rubber band, let him roll on an exercise ball, chew gum. ADHD kids do well having multiple parts of their bodies busy at once. Especially having something to keep the hands busy. Don't forget the advil for yourself too!

What you are describing sounds like intrusive thought OCD (OCD can take several forms - e.g. fear of contamination, scrupulosity, the need for symmetry, sexual obsessions (even in young children), hoarding, etc). It is not behavioral and cannot be controlled. It isn't a choice that the child is making. Kids often hide their OCD in school - it doesn't go away. They become pre-occupied with the thoughts but internalize them. Outwardly, it can look like inattention, ADD, daydreaming...then when they get home, the stress of holding it in can make them fall apart. You don't give the ranges for myco p. results, but her IgM result seems high. Myco P. can trigger Pans and can be transmitted by tick or person to person. If it is indeed high, ask the pedi for abx for that. I think biaxin is a common script for that. It can takes months to fight it. But ask for a script that at least gets you to the appt on the 16th. Ask for a 21 day script - maybe your pedi will be willing to do that given her condition, even if he's a non=believer. If he's the one who initially told you not to bring her in for the rash, he may be reluctant to help now. If that fails, some of us have lucked out and gotten scripts from CVS minute clinics, describing sore throats and congestion. It helps to go in after 5 pm so you can say you intended to go to the pedi but now that the office is closed, you don't want to have your kid suffer thru that night, can they help you out. You can ask about encephalitis, but I do believe it's a spinal tap and would have to be done in a hospital.

My LLMD told me about this http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=pill+maker&x=0&y=0 For anyone who's tired of drinking clay slurrys or paying extra for stuff in pill form when powder can be much cheaper...a pill maker for $15. You can buy the empty capsules and then fill with whatever. Kinda cool.

I just PMd you some additional info

I sent you a PM (look in the upper right corner of your screen when you're logged in, under your screen name, you'll get a pull down menu where you can check messages).

The best thing to do is see if you can convince the pedi to prescribe antibiotics while you wait for the lyme results. Most LLMDs (lyme literate MDs) will use more than one antibiotic at a time - one targeting bacteria within the cell (intracellular) and one that works on an outer (extracellular). The OCD symptoms would suggest either neuro-lyme or bartonella - another infection carried by a tick. Either way, many start off on bactrim plus azithromycin or amoxicillin. But there are many possible combos. Even if you can only get your doctor to prescribe one abx, it's better than nothing. I PMd you some CT docs. As Michael mentioned, lyme is a hot potato. You may may need to do additional testing beyond the standard western blot you've already done. Under the helpful threads section at the top of this forum, you can find some articles on the tests and how to find a doctor. The biggest thing you'll likely find is that the doctors you always thought would help you may blow you off. It's a strange feeling but it's something that's quite common when a child presents with neuro-psych symptoms. The docs are generally less concerned with "why" and just want to medicate symptoms. You'll need to see a lyme specialist if you want someone to give you treatment options beyond prozac. Sorry to sound so jaded. But nearly everyone on this forum started out on the Pandas forum - we're all very familiar with the "overnight" changes in our kids and have spent a lot of energy searching for doctors who will help. We've all walked in your shoes. So for us, it brings back some "PTSD" and it's hard to not sound angry that yet another family is being put through this. We'll all help as best we can.

I don't want to start a debate. But I personally would not get an ER involved. In some cases, you end up losing control of a situation. A spinal tap is not a particularly good way to detect lyme. The mouth movements could be OCD phrases. I think getting to a helpful doctor is critical. But you're not going to find that doctor in an ER. Yes, it could be something serious. But with the clinical story, it sounds more like lyme or PANS. Just my humble opinion. But don't want to freak a new mom out. Using buzz words is a good idea. But I would be as methodical and calm as I could. I think the better path is as others suggested and getting strep tests and finding some way to justify antibiotics and then get on waiting lists for the good Pandas/lyme docs to get in asap. I would also get What To Do When Your Brain Gets Stuck and Up and Down The Worry Hill, so you can help your child understand what OCD is like. It may be very scary for your daughter and you want to reassure her that you will help her fight the worries and keep her safe. ERP therapy may not be particularly successful early on, but laying the foundation can be reassuring. Intrusive thougths OCD is particularly frieghtining to a child and sometimes OCD tells them something bad will happen if they talk about it. That's a huge burden for a small child to carry around. You need to let her know you know "her secrets" so you can help her not feel isolated. There are many great ERP experts on this forum and I'd encourage you to post with some of your daughter's issues so they can maybe brainstorm some coping tools while you search for medical support.

My DD is also having Pands-like melt downs due to a virus. I PMd you the gory details. She was a little better this morning, but it is bad. Here is my unscientific theory: She is definitely an under-methylator (testing next week once she gets over this virus - don't think she could handle a blood draw right now). If she can't utilize regular folate (testing for this next week), this, plus her mild KPU, is keeping her methylation pathway (and other related detox and immune pathways) running at a very inefficient level. The body is like Simm City. It has a limited number of resources to serve a needy community. An under-methylated system has even fewer resources to go around, so it's always running at say, 50% strength, maybe making just enough seratonin to stay functional, with mild anxiety. Then along comes a virus or infection and the immune system demands more resources. The body diverts resources from the alread barely functioning methylation pathway, but it isn't enough (in DDs case - there's a KPU zinc deficiency as well and immune resources are already waging war on lyme, so not many soldiers left for any new virus or bacteria). So both the immune system and the methylation system run as sub-optimal levels. Her body stays sick longer and her seratonin supplies gets even more diminished, causing the infection-triggered OCD and other Pandas issues. Life becomes miserable. Total simplistic conjecture on my part. But it makes me feel better to think that if we can get rid of the virus (just picked up some oil of oregano capsules), and address under-methylation, maybe it will give her body a better shot at functioning at more than 50% (or whatever sub-optimim level it's at) and the body will be stronger to fight lyme and future infections (and have enough ingredients to keep making seratonin at the same time, so I don't have to watch her go insane before my eyes). I'm starting to see it as a bunch of inter-related cogs. methylation cog/immune cog/detox cog (which may also not be getting rid of metals along with microbial toxins). Very complicated stuff. But I'm starting to get why just giving abx to kids who've been chronically sick isn't going to fix the problem for everyone. All the cogs need cleaning and support. Man, I miss my days of ignorant bliss when I thought all I had to do was read a few parenting books and I'd be all set.

Our LLMD was looking for a lab to test glutathione yesterday. He struck out. Not even Genova. Just pre-cursor tests. But he knows some of his patients have had it tested. So if anyone knows how/who tests- please post.

Our LLMD tests for this - the C3a and C4a as well as all of Shoemaker's markers (MSH, MMP-9 etc). He's also in CT, but closer to Hartford. PM me is you want his info. (FWIW - I don't personally think he tosses out the lyme label for everyone. He has complained in the past of patients coming to him asking for a lyme dx when he didn't think they had it).

I don't have any specifics, but I have the same impression. DS was once a ticcer. Not sure where I got the impression, but there are two things I have in my mind that I shouldn't be giving him - D and Omega 3s - and I have no idea why. Just something I made up my mind about early on. Now, as I look into methylation and pyroluria, I see that pyrolurics can have out of whack Omega 3/6 balances and may actually be the rare group that needs less Omega 3 and/or primrose oil in lieu of Omega 6. So maybe I read something a long time ago and it resonated without me really knowing why. But it seems to be a good decision for my DS. I guess that's a hazard of googling too much about too many things Can't really tell you what to do. Just wanted to tell you you have company.

I think C3d is only an indication of the state of the immune system. I had a hard time finding much on it when it was first run on my kids - mostly got hits on Rheumatoid Arthritis. It isn't a definitive test for anything. It's just one of those helpful measurements to put into a bigger context - like when you feel your child's forehead when they say they don't feel well. You use the "mom-eter" as my kids call it, as a first glance to see if something's brewing. Then take out the them-ometer to see just how high the fever is. Why I suggest it so often is that for my kids, it's been a good indicator of general health. When we started with DR B, DS was in the 50s and DD was in the 20s (above 8 is high). It told us their immune systems were working overtime - on something.... After IVIG, DS remained in the 50s. Dr B agreed that it should have gone down. That it remained high suggested his body was still fighting something (or was still fighting itself I suppose). That, along with his bad response to IVIG, made us consider - and find - lyme. For DD, who has never been clear cut anything (could argue for Pandas, could argue for lyme), her C3d was in the 20s then climbed to the 50s then to the 90s over the course of a year. It gave me the confidence (along with CamK and very high anti-lysogangliosides and elevated C3a) that her OCD was infection-based. She's been on combo abx for 10 months and he C3d is now in the 20s. That measurement corresponds with her overall improvement. So it's not a diagnostic tool, but it gives me a way to track general immune activation. Not sure that's what an immunologist would use it for (we see an LLMD now) but I use it as a "mom-meter". And it's covered by insurance - go figure! That your DS was normal doesn't mean he doesn't have Pandas. Only that his immune complement system isn't overly activated. At least, that's my understanding. Certainly something to discuss at your next appt. with someone who actually knows this stuff!

I don't have any personal experiences. My impression is that Rogers has a good reputation in the OCD community. But my impression is that they view treatment strictly from a therapy+pharmaceutical viewpoint. I don't know that they'd work with you on a bio-medical approach for Pandas. If you have tried psychotropics in the past with positive results, the in-patient therapy may be beneficial. But if you don't want to use psychotropics or have had a bad experience in the past, you may want to ask some questions before admitting your son. I don't know, but I suspect you'd be waiving certain rights over medication protocols and compliance issues. I suspect they face the need to force patients to take medications, so if you go this route, make sure you understand what you will and won't be able to do ahead of time. If you do feel there's an infection behind your son's condition, there are some blood tests that can give you some sort of support for this, if you haven't done them already. C3d immune complex shows if the body's immune compliment system has been activated. It can't tell you what sort of infection is there, but a high result will show that the body is fighting something. C3a and C4a compliments are other immune compliement measurements that are most often elevated as a result of lyme or mold. CD57 is a measurement of natural killer cells. A low number can suggest a chronic infection may be suppressing the immune system. It is often used in the lyme community as a way to see how robust the immune system is. There are other tests as well. It depends on what sort of infection or environmental issue may be at play. But the above are available by most commercial labs and are generally covered by insurance. The C3a and C4a sometimes require special handling kits because often they get sent out to a specialty lab as a sub-contractor. So if you go that route, call the lab ahead of time. They may need a day or two to order the kit before you go there for the blood draw. Only you can weigh the pros and cons. I know you just want to bring your child and family relief. And it's hard to make informed, rational choices when things are so severe. So no one can tell you what the "right" answer is for you. But I would ask as many questions (including worst case scenario questions) as you can ahead of time so you can make the best decision possible.

Your son's tics sound like what we dealt with. At his worst, DS couldn't hold a glass of milk b/c he'd jerk so severely that milk would go flying across the kitchen. He looked like he was being tasered. He occassionally would "freeze" mid-stride or mid-sentence. He would make the whole table shake if his hands were on it. Many have found HD IVIG to be very beneficial. We are in the minority where it led to a worsening of symptoms and a very slow recovery. We never saw any benefit, even temporarily. We have lyme as a co-factor, but even so, many lyme families don't seem to struggle with IVIG the way my son did. In his case, he seems to have a very hard time whenever the "cure" gets too aggressive - his body can't seem to get rid of bacterial toxins (from the die-off) fast enough and it produces symptoms worse than the cure. So we need to go slowly and do a lot of liver support. He also has a condition known as pyroluria - a zinc/B6 deficiency. Zinc is the immune system's bullets and B6 is a player in the methylation cycle, which is a precursor to seratonin production and the body's detox pathways. You may want to ask Dr T about methylation and transsulfuration pathways and get his thoughts on detox. If these systems aren't working properly, you could end up giving your son's body more than it can handle with a HD IVIG. The only reason I mention this is that it's possible that what you saw with the biaxin may not be a reaction to the abx but to the body's struggle to detox the die-off toxins. I know this sounds like a postcard from nut-ville, but I've come to appreciate that in kids who have been ill for a long time, there's probably more than one thing gone awry. Untangling the mess probably requires a slow and steady support program as a precursor to any aggressive treatments. Something to consider while you navigate the IVIG avenue.

One place to look for an integrative is to go to your health food store and pick up one of the local magazines. They often carry ads and a physician directory. You can also go the the American Osteopath Association http://www.osteopathic.org/Pages/default.aspx and see if there are local docs. DOs tend to be holistic in their approach yet have the same training and medical privilages as MDs (can write scripts, hospital privileges etc).

My DS also has the urination issues you describe. Some may be OCD/habit, but often there is a physical need. It seems to come with other medical symptoms but not necessarily with the neuropsych symptoms. So for us, it is health related but I don't know exactly how. My DS has somewhat elevated mercury levels and mercury can cause frequent urination (not just an urge - with actual output). My advice would be to track it and keep an eye on it. I don't know that it's a kidney problem per se - sounds like the experience of others is that you may not detect anything with traditional testing. But IMO, if there's abnormally high volume, then it's a sign of some sort of medical issue. Maybe don't freak over it, but if you feel it's beyond an OCD thing, then don't dismiss it entirely.

CAB - two thoughts...first, I totally understand your hope to get support from us in light of your inability to get your doc interested. But we are so far out of our league on this stuff...I really encourage you to take your labs to a naturopath or DO (doctor of osteopath) - this is really their area. I know that when we moms look back at this thread 6 months from now, we'll cringe at our speculations and incomplete understandings. We're really just tossing things out to spur ideas. Some will prove insightful and others will be dead wrong. I think with your legitimate concerns and the serious peanut allergy, I'd get yourself to a trained person who works with this stuff all the time. Also, keep in mind that the labs you have (which are beyond me) are a snapshot in time. Results are going to be influenced by the time of year (allergens), the time of day (fasting/not fasting), diet in the past few days... This stuff shows that you can have a genetic tendency toward certain responses, have a fundamental need for more of one thing and less of another. But people don't walk around on the verge of anaphylactic shock every minute of every day. Histamine et al levels change throughout the day and are influenced by many factors. My DD fits neatly into an undermethylator box. My DS does not. Some people are neither (tho I agree with Nancy - his allergies certainly weigh heavily in undermethylation). Dr Walsh ended up making 26 different types of methylators for this very reason (and I suspect that if our alphabet had 30 letters, he'd have made 30 types). Before you consider tweaking anything, I'd get myself in front of a doctor who will go in this journey with you. Call some people and ask the receptionist if methylation is something they deal with. If she's never heard of methylation, ask if the doctor frequently uses vitamins as part of his/her protocol. I think with all your questions and concerns, and the PN thing, you'd sleep much better having a professional on your team. If your current docs aren't helpful, you need to switch or add a team member. Nancy - so glad DH is curious. You guys are way better equipped than I am. I spent too much of chemistry class flirting with the guy who took me to Jr Prom (and that was a total bust - man do I wish I'd had different priorities. He was the center of the basketball team and I'm 5'2 - what the heck was I thinking?). As for the KPU/zinc link - it has caught my attention. But I'm not sure how it all fits. I did see one diagram that showed things beyond the SAMe part of the cycle and zinc was about 3 points downstream from there. At the zinc juncture was the point where immune system issues and heavy metal detox occurs. So I'm searching for that diagram again. Zinc serves as the bullets for the immune system. I think a clog in the methylation system can result in zinc inefficiencies (whether KPU induced or not) and I think that, along with the effects methylation can have on seratonin, dopamine and the BBB, apply to a lot of infection-triggered disorders (Pandas, lyme, schizophrenia, anorexia and others). Nancy - re: the B-12...my DH took a sub-lingual B-12 for about a week, recommended by his new integrative doctor and he stopped. It made him jittery/fidgety and gave him tingly feelings in his legs. So I guess you need to consider DSs personal response. Thankfully he's old enough to be able to describe how it effects him. It sounds like he might benefit from reducing or removing it, but you're right - it's all a balance. Maybe also look at diet to see how much he may be getting from there. I am now a huge fan of integrative docs. Like all docs, some are better than others, some have specialties, but in general, the holistic approach to a problem has been really helpful for us. Aside from my annual GP physical for insurance purposes, integratives are the ones helping my family get healthier. Highly recommend getting one (HA - sounds like I'm telling you to pick up a cool new widget at Target). If anyone finds a diagram that shows zinc downstream in the methylation cycle, please let me know. Searching for it again is driving me crazy.

My son's ANA is normal, don't think we ever tested my DD. Both are clinically lyme, but DS also has a clinical Pandas dx. Clinically, I think you can advocate for either based on such a high symptom overlap. I think what makes some families opt for lyme (speaking strictly from a clinical picture) is that a lyme protocol seems to produce better results. But then, most ultimately end up doing labs to confirm their suspicions and reassure that it's the right course. There are labs you can run that are covered by insurance (C3a and C4a immune complexes, CD57 (but not sure how reliable this is for kids), bartonella, ehrlichia and babesia labs through Specialty Labs - a division of Quest). These are things you can run before Igenex (tho keep in mind many insurance cos will reimburse you for 50-80% of the Igenex test - it's just that you have to pay out of pocket up front and seek reimbursement on your own). And you can get a 15% discount from Igenex if you test more than one family member at the same time. As for ANA, I know a few Pandas and/or lyme kids who have elevations. But I don't think it tells you much. Just that something is amiss. But not what to do about it. I'd probably speak with a doctor about getting the other labs run or consider Igenex for piece of mind/direction. There's also a new lab test that can culture spirochettes from a blood sample - which removes any doubt - if you can see a spirochette, no debate about whether you have lyme. But it too only has an 80% accuracy rate - no false positives- a spirochette is positive, no debate- but 20% could get a negative and still have lyme (if I understand their stats correctly). Unfortunatley, it's almost $600 and not yet covered by insurance.

This may be helpful - but please note - even this source says these are generalizations and can't be used to come up with a treatment plan. But it does offer a little help in determining what may be helpful or not helpful for your kind of kid. I wouldn't start tossing supplements willy nilly but it seems like a good, simplified guide of a very complex system. http://www.nutritional-healing.com.au/content/articles-content.php?heading=Major%20Mental%20Illness%20Biochemical%20Subtypes