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This is the content of the letter we've used: Please be advised that ___________ is under my care for the treatment of PANDAS, an autoimmune disease that can result in neurological dysfunctions related to streptococcal infection. Symptoms of PANDAS can include sudden-onset tic disorders , obsessive compulsive disorder, attention deficits, emotional lability, dysgraphia, fidgetiness, anxiety, sensory defensiveness and/or changes in urinary frequency. These symptoms present in a sudden onset and gradually wane over time. School accommodations that are made for other children presenting with these various challenges should also be provided for _________. There are no limitations on physical tasks. PANDAS is a pediatric illness that may resolve by the time ______________has reached adulthood. Until then, he will remain at risk for a sudden presentation of the above symptoms and will continue receive on-going medical care. I deliberately left things vague so that I could alter a 504 as things changed, without being limited by what the doctor's letter said. In our elementary school, personnel were very hung up on specific language, so the more vague, the better. The intermediate school is much more flexible and are ok with adding details outside of the letter, so I've found in both situations, vague is better than too precise. Edit - I need to update my son's letter - the school needs a new one every 3 yrs. So I'll be editing this to say PANS, as lyme is also part of his picture. You might want to use PANS and/or say that it can be triggered by infections, not strep specifically. Depends on your situation.

A friend of mine is interested in testing for KPU(pyroluria) but doesn't have doctor support. I know there's at least one lab that runs tests without a doctor's orders. Can anyone tell me the names of the labs I can pass along? Thanks

We tested DD with blood test. It isn't the most reliable but it was the easiest way to get a pulse on things at the time. We used a small amt of EDTA plus a zinc supplement (she has borderline pyroluria/zinc deficiency). Hard to say if we saw negatives - she was fighting EBV at the time and we had an undiscovered methylation problem that, in the end, was more at the root of the problem. When you chelate any metal, your biggest challenge is to get the metal to bind to something and stay bound all the way through to excretion. If you use a weak chelator, it may move that metal from where it started to a different place but not all the way out. The big debate as I recall is what's the best dosing schedule to minimize re-distribution and assure excretion. Using zinc to rebalance copper makes sense but go slow and do some research about things that will bind to the copper. If you see negative behaviors, reduce your schedule or dosing and if at all possible, do this under the guidance of a doctor who has experience with it. In my own experience, copper played a part in bipolar behaviors more than OCD.

Went to DS's open house at school last night. Three teachers this year, not just one. Getting ready to have our "meet & greet" meeting where I tell the teacher(s) about DS's history... I'm actually finding it hard to figure out what to say. The tics, the bad OCD, nearly all the symptoms are either gone or so low level compared to years gone by that I almost feel foolish bringing it all up. Except that there's still ground to make up and still the chance for a flare, so they need to know what to look out for, what skills need shoring up...But for the first time, I don't think I'll spend more than 2 minutes talking about the bad times because DS has put so much of it behind him. Like Wendy, we're not done. You know that. But mile 18 is sooo much prettier than mile 1 in this marathon. As for DD - some mild anxiety over "no one" playing with her at recess (BFF moved to school in next town). But devil child is locked away in Tanzania and DD is overall doing really well. As for me, I'm in week 2 of being on the treadmill and am trying to get serious about a project I've had in my head for years. I actually have time and emotional energy to invest in me. Go figure. And you? Have you gained any weight back? Sleeping any better? How's GB pain?

Philamom - no practical advice. Just lots and lots of sympathy for you! Keeping you close in my thoughts...

I will always be the first to put more weight in a gut feeling than anything. But...wait until you have the lab results in your hands and can look up any band info that might have an IND or + next to it. Dr B told me my son didn't have lyme because the overall Igenex report said negative on the front page. But then I got home and saw 5 IND and a few ++ and saw an LLMD, who felt that between the labs and the whole history, it was a slam dunk reason to treat lyme. And my son did improve significantly with the change in abx that the LLMD made. So I think the actual lab results are important before you close the book on it. You've heard the whole argument about why labs aren't reliable (there are 3 good articles under helpful threads in the lyme forum). You'll hear from moms here who swore for months/years it couldn't be lyme but in the end, it was a part of the puzzle. I'm one of those moms. "But he's classic Pandas" I'd say. Yes, and classic lyme too. They're so similar. And you can get lyme in Florida. Not as common by any means, but not impossible. Ok, so those are the reasons to keep an open mind. Then, there's your Typhoid Mary husband. Yep, probably part of the problem. But here's my working theory - a kid has some under-the-radar health problems when along comes a bacteria - strep, lyme (they share a few outer proteins that make them look alike to the immune system). The body has an autoimmune reaction - PANS. Subsequent infections - whether it be strep, myco, lyme, a virus - can always come along and now cause the same response. So you need to treat the underlying infection and subsequent inflammation. The major practical difference is which abx will you use? Answer - the one that helps. I got myself so tied up in labels at one point. At the end of the day, it only matters what we do to treat it. I personally think some of the things that are helpful in lyme are also helpful in Pandas (detox, immune bolstering supplements). If Dr B is giving you an abx combo that's helping and treating your DH, then does it matter what you call it? if the specific abx choice isn't helping DS or DH, then work toward finding one that does. If you reach a point where you need fresh ideas, or things stall, then look for an integrative, DAN or LLMD who can add more tools. Trust your instincts but also don't get into knots on what "it" is. I slept better at night once I got over "it" having to have a single name.

Don't beat yourself up. My kids take 15 Billion and do just fine. So don't feel like you were way off the mark. Everyone's "right dose" is different. Probiotics will be necessary while you're treating but I don't believe you can beat C Diff with probiotics alone. Also, if you end up using an anti-fungal like nystatin or diflucan, it will kill the Sacc Boullardis as well as C Diff. You want to use a variety of strains to replace what's being killed by the abx and anti-fungals. Like mdmom, we do not have an issue with S Thermopolis. My son does, however, react to Sacc B. So there's no universal answer. You just need to try something and if you don't see improvement, try something else. Just be aware that something you try could end up not working. Can't tell you how many months I blames other things until I realized by elimination we had a problem with Sacc B. Makes no sense. But everyone's gut is different.

You can have babesia all by itself. There are multiple strains, so a test for one strain could miss it if you were positive for a different strain. You can get babesia from a tick but you can also get it from a blood transfusion - from the CDC website: In an article published in 2011 in the Annals of Internal Medicine, CDC and collaborators described 159 transfusion-associated Babesia microti cases that occurred during 1979–2009, most (77%) from 2000 to 2009. No Babesia test licensed by the Food and Drug Administration is available for screening prospective blood donors, who can feel fine despite being infected. http://www.cdc.gov/parasites/features/babesia_article_9-5-11.html This is from whole blood. I don't know if you could get it from IVIG. (not trying to scare anyone - I just don't want to be falsely reassuring and say you can't nor do I want to be an alarmist and suggest you can - I honestly have no idea). Babesia is not a bacteria (lyme and bartonella are). Babesia is a protozoa that lives in the red blood cells. Generally treated with an anti-malaria drug like mepron and an erythromycin abx. Some LLMDs use artemisinin. If your DS did have babesia, it would be a good idea to check for lyme and bartonella with a lab like Igenex or Advanced Labs, even if you've done a lyme test with a lab like Quest in the past. But it is possible to have one without the other. All this being said - don't freak. Your DS is no sicker today than yesterday. You just have a new lead to check out. Make sure you still get some sleep tonight.

Yes to any of your answers. There's no single answer. Often, it takes my DS about 6 weeks for a flare to calm down after antibiotics have killed the infection. But if your DD's symptoms get worse when you stop abx, it suggests that either the infection isn't gone or that the abx are helping to control the immune system and inflammation. Some here have found that there was a chronic infection - a chronic sinus issue, mycoplasma pneumonia (which can takes months of abx), lyme or bartonella (both from ticks). So you stop the abx and the infection is still there and it starts all over again. Many here also keep their kids on abx both the treat a current infection and to prevent any future infection. This is the standard protocol for rheumatic fever - the risk to the heart from a second infection is too great, so people are put on abx until adulthood. You can also use motrin to help with the inflammation. Motrin will lessen my kids' symptoms in about 20 min. In bad times, I'll give them a motrin every 6-8 hrs non-stop for a week or two. it has to be motrin (ibuprofen) not tylenol (aceteminophen). Tylenol doesn't do squat for our kids.

i think there are two important things we did to survive. First, you need time away from DD4. Sounds awful, but the time away is the only way to recharge. You can't give and give and give and not get empty. For me, it was when the kids were in school. But if your child isn't in school or daycare yet, or if you can't afford a sitter or rely on family because things are too crazy, then take turns with your DH - bot one way or the other, you need time away sometimes. Time to breathe. Even if it's grocery shopping or running an errand. Second, you need to make time for your DH and you to talk. Going on a date might not be practical. My DH and I tend to do it in the mornings when we're showering/shaving/primping. The kids are still asleep and we can have honest, uninterrupted conversations. Because it was also a limited amount of time, DH liked it because he knew it wouldn't drag into some long, uncomfortable talk. But it was a 15 min check in to keep us on the same page and hash out differences. In general, one parent takes this thing by the horns, does the research and the doctor thing. Over time, that parent's views go one direction. If you forget to update your spouse with your current thinking, you tend to drift over time and end up in different places. My DH is famous for remembering the bad stuff and thinking of good moments as a fluke. So his mindset would be DS is a jerk who happened to be nice for one moment and my mindset was that one moment was the real DS and the raging, jerk stuff was the disease. I needed to keep reminding DH of evidence that supported my view of the world. I also needed to give him very short summaries of the medical evidence and what I wanted to try next. He didn't want to know details. Just short, sweet a-b-c summaries. Having only 15 min every morning helped me keep things concise and kept him in his comfort zone. It's really hard on the whole family. The best thing to do is to keep pushing for a medical treatment that works, that gives the family some room to see glimpses of normal. But during the process, remember to talk to your spouse and be there for him. Part of my DH's problem was that he didn't just lose a child to the disease but his wife too. I wasn't able to be there for him because I was too busy being warrior mom. But men tend to have no outside support network. If their BFF (you) isn't available, they're lost and that tends to make them very cranky. Do all you can to make sure you're both rowing in the same direction, even if that means putting the needs of your DD aside for a few hours a week. I wasn't always good at this but somehow, you have to find balance.

I think given your DDs history, it's very reasonable to consider PANS and to continue to push for a steady dosing of abx to maintain the improvements. Does that mean it's PANS or Pandas? Not sure. But I think it means it's worth pursuing and to me, it does suggest that there's a medical cause of her issues and a medical treatment. I have to disagree with LaurenK that if a doctor gives a diagnosis, it must be so. That wasn't at all true for my kids. I know that sounds like I'm saying to doctor shop until you get a dx or treatment that you like. That's not really what I mean. But I do think we know our kids and no kid who's permanently impaired has moments where she's sharp as a knife. If those moments exist, then that's the baseline that's possible. To me, it suggests working with a doctor who has a large toolbox and who believes that autism is only a label for a group of conditions we don't understand and that the things you're seeing are medically treatable. That might be a Pandas doctor or a DAN (Defeat Autism Now) doctor or an LLMD (lyme literate MD). But it sounds like an integrative doctor who considers a broad range of medical issues, who tries to support as well as suppress the body's systems, could really help you. When we were considering a neuropsych eval, our Pandas doc told us to cancel, that all we'd be doing is measuring the impact of the disease, not my son's true abilities. She suggested we treat the illness first and then if there were residual issues, test at that point. So the labels and findings you have can be useful in obtaining therapies and an IEP but if your heart tells you that there's a bright lamp hidden under that basket, believe that feeling. My son got sick when he was 5 but had sporadic issues as a toddler. In my own experience, yes, he had delays that have gone away with treatment. The single biggest factor in my son's delays was that he has pyroluria - a genetic zinc/B6 deficiency, as well as a chronic infection. Once we started supplementing (under an LLMDs guidance), it was like someone turned a dimmer switch from low to bright. He had/has lyme and Pandas as well. But he needed more than just abx to help him literally emerge from the fog. Bottom line - trust your instincts. Fight for what your heart tells you. Keep digging.

Thanks Nancy! Liked the article and it gave me the encouragement I needed to keep believing DS will continue to recover and regain normal everything. I just didn't care for the last comment that "Autism currently cannot be cured. At present, only the symptoms of the disorder can be alleviated through behavioral therapy and other treatment." Yes, it can be cured and you can do a lot more than behavior therapy. Grrr..But I preach to the choir. Thanks for sharing!

I think there are two levels of fighting inflammation - the "this is a crisis and we need big guns" level and the "oh crap, it's bubbling up and we need to get on top of this" level (sometimes it's the "I wish I had a big gun but don't, so what can I find in my own house" level) Big guns are things like plasmapheresis, IVIG and steroids. Big guns need a doctor on board. Coping guns are things like motrin - not just one dose but steady dosing for a period of time curcumin, tumeric (Enhansa is a product that is made of tumeric) anti-oxidants like alpha lipoic acid, resveratrol, vitamin C, vitamin B6 which is needed for a working detox system antihistamines like quercetin, allergy meds and pepcid/prevacid which also block a type of histamine and seem to help some kids diets that heal the gut things that help close the BBB like lecithin and phospholipids supplements that support "calming" neurotransmitters like 5-HTP, tryptophan, gaba also, some antibiotics have anti-inflammatory, immune regulating traits These things may not all be "true" anti-inflammatories, they help to calm things down. You're absolutely right. You need to get rid of the infection as step one (plus be on the look out for things like mold and yeast). But then stopping the inflammation is step 2 and also necessary before the behaviors recede. The other thing that I've found hugely important is to have a system that's not clogged up. It's why methylation is so important to me. If your body's systems aren't working properly, the impact of inflammation gets amplified. I think this stuff probably gets discussed a lot, but maybe not on threads dedicated to the subject and not always using the term "anti-inflammatory". I tend to use the term detox but in my mind, detox helps reduce inflammation. So trying to say the same thing but using different words.