LNN

When I was studying to spend time in Hungary, my professor wanted to impress on me that as a culture, Hungarians are known for being strong-headed. The joke is "put 4 Hungarians in a room and you'll get 5 opinions." I think Pandas parents must have a little Hungarian in us. I hesitated to post to this because I figured everyone would have different opinions (including me). One of the most confusing decisions for me was how much to give. I'm amazed that some people are able to get so many billions of CFUs into their kids. But since my son is following a lyme protocol and already takes a dozen pills a day, I need something that 1) gets the job done in as few pills as possible ans 2) is affordable. We used to use Culturelle but it's only 10 Billion per pill. We'd also add PB8 and Sach Boulardi to get additional strains but that meant 3 pills that only gave us 23 Bill CFUs. And even on that, DS had loose stools. Our doctor switched us to 1 Theralac Master Supplement/day @ 30 billion CFUs (5 strains of probiotics and 2 prebiotics). It's @$1/pill but we only need one. I asked about needing to give more than 30 and he said he didn't think it was necessary as long as we were getting the desired "outcome". And even tho he's now on multiple abx, DS's stools are firm and Candida tests are negative. My daughter, who used to get yeast infections every few months and has been on abx for a month, takes 1 Theralac/day 5 days/week and 1 Theralac TruFlora two times/week to ward off yeast. So far so good in the yeast dept. I think once you find something that works for your circumstances, you stick with it. I know plenty of the options mentioned are equally good. I just toss Theralac out there because it gives a pretty good bang for the buck.

Happy Birthday Emerson!!! Sending you cyber hugs and many many wishes for health and insights this year. Thank you for giving us all the gift of your friendship - a gift worth much more than you may realize.

Handwriting is one of our clear measurements of health. When DS is not doing well, we see margin drift, b/d and 9/P letter reversals, he loses his ability to tell where the mid-line should be and we'll see things like store - with the "r" always towering above all other letters. some letters float in mid-air, some become barely recognizable. We also see erratic spacing between words. It's almost the kind of writing you'd do if you were blindfolded. One of the most helpful things I've done for school meetings is to take writing samples and place them side by side. The 'ol picture worth a thousand words thing...

I also let our doctors, including Dr C, know about our lyme/bartonella. I believe Dr L is quite open to testing thru Igenex and readily recognizes that lyme can play a role for some kids. I just think she feels this is outside her area and doesn't treat lyme on her own. Just my impression.

I think it is wise to pursue this beyond your local pediatrician. Although the battle to fight this will continue, life for the parents becomes far easier once you add a knowledgeable, supportive doctor to your team. You will still need to be the case manager but you won't need an act of congress to get help at every step of the way. There are Pandas specialists in Florida, Chicago, DC, Northern CA and CT. You can check the "useful threads" at the top of the forum for a list of other doctors who've been helpful. You can also contact ilads.org to get some referrals for LLMDs - lyme-literate MDs - who may be more willing to help you look for infections and use antibiotics and supplements to help you. But most likely, some amount of travel will be involved. I want to mention - some of the things you consider "separate" from Pandas - the learning disabilities, the general anxiety - may be largely or entirely - part of a chronic disease. For years I struggled with trying to accept my son's apparent LDs - only to watch them shed like peeling skin when he started on the right treatment (in our case a combo of Pandas and Bartonella). It's not a straight path to healing - plenty of bumps in the road - but an upward trend that brings your child closer to health than you once let yourself hope for. As you work toward finding the right team of doctors, you may also want to introduce your daughter to Cognitive Behavior therapy (CBT) and Exposure/Response Prevention (ERP) to bring the anxiety and OCD down a notch - at least when she's not at the peak of an episode. You can find many threads on this and lists of books that can be very helpful. Welcome to the forum and keep us posted...

I'm not trying to discount that kids can gave negative reactions to vaccines, by any means. But I am confused by your post. A local redness on the arm is a reaction but it's a fairly common one and could be more of a normal immune system response to a needle injecting something into the body. I don't know that this means it's an "autoimmune" response. I would maybe see "autoimmune" if you were saying you saw unusual neurological behaviors shortly afterward. But I'm trying to help you not freak just because there was a hard red spot at the injection site. I'm also confused about why your doctor would prescribe amoxicillin in response. Aren't measles, mumps, rubella and chicken pox all viruses? So an antibiotic would be useless for these. So I'm just getting confused. I'd recommend finding out what the vaccine was for and also double check with your doctor to verify what the antibiotic was prescribed for. If you're preparing to see a new doctor, then having the correct history and time lines will be important. You may even want to request a copy of all medical records just to have them handy.

From Wikipedia...The Herxheimer reaction (also known as Jarisch-Herxheimer or Herx) occurs when large quantities of toxins are released into the body as bacteria (typically spirochetes) die during antibiotic treatment. It is classically associated with syphilis. Typically the death of these bacteria and the associated release of endotoxins occurs faster than the body can remove the toxins. It is manifested by fever, chills, headache, myalgia (muscle pain), and exacerbation of skin lesions. Duration in syphilis is normally only a few hours. The intensity of the reaction reflects the intensity of inflammation present. The reaction is also seen in other diseases caused by spirochetes, such as borreliosis (Lyme disease and tick-borne relapsing fever) and leptospirosis, and in Q fever.[1] Similar reactions have also been reported to occur in bartonellosis (including cat scratch disease),[2][3] brucellosis,[4] typhoid fever,[5] and trichinosis.[6] On this forum, we tend to use the term a little more broadly. The above focuses more on syphilis symptoms. Very loosely, it's similar to Dr K's :turning back the pages" concept where you can get worse before you get better. In lyme, if you start treatment and begin killing spirochettes faster than the body can rid itself of the resulting die-off toxins, you'll see a worsening of symptoms or a general feeling like cr*p. So many lyme doctors focus on detox supplements to minimize this reaction. It is generally self-limiting and does not occur throughout the entire treatment - only when the rate of killing the bacteria is faster than the body's elimination abilities. You will see a similar reaction in scarlet fever - which is a rash produced when the body kills certain strains of strep and the exotoxins produce a rosey rash - usually on the trunk of the body. Only a handful of strep strains produce this rash and it generally isn't referred to as a herx (probably because the rash doesn't make you feel bad), but it's the same concept.

Sounds like you have a serious communication gap - and a meeting - or several follow up meetings - sounds in order. We have had homework marathons like you describe. In hindsight, I pushed too hard and wish I hadn't made it such a power struggle. He really was trying. But I would get so angry at the disease and it's cruel effects on my son's abilities and I would so desperately want him to be able to do homework like other kids. His second grade teacher told me in the middle of last winter that if homework took more than a certain amount of time, stop. Send in what he could complete. She needed to be able to gauge his abilities, not my ability to make him sit for hours. So at your meeting, you may want to establish homework guidelines. An upper limit of time or effort that no one will expect your son to exceed. When that limit is reached, homework time is over - with no punishment or negative grading as a result. This isn't good for either of you.

Our LLMD has recommended bovine IGG powdered supplement but I can't get my son to drink the stuff for all the bribes in the world. So can't say if it works.

My DD6 has been a Pandas/Pitands question mark for 2 yrs. Recent events make this seem more likely. But she has had allergy shots weekly for 10 months with no apparent effect on behaviors. She has had months of feeling great and months of not so great, but no correlation to the shots. In contrast, her seasonal allergies are debilitating. Her eyes swell shut and she cannot leave the house in May at the peak of whatever tree she's most allergic to. She becomes so PMS-y that we all suffer. With 3 feet of snow outside, we won't know if the shots have helped until things start blooming again. But we had to do something. I think others may have had different experiences, but no adverse effects in my DD that I can see. (the one notable effect - in the months she's been great, getting shots has been no big deal for her. In the months where we had pitands-like issues, the shots were very scary for her. Lots of ERP and tears. But two weeks ago, while on omnicef for sinus infection, suddenly shots were no biggie after months of fears (and other OCD issues). Alexander Fleming (discovered penicillin) is my patron saint!

If there's mucus dripping into the throat and gut, that can cause stomach upset.

There's no citation or study to support her statement that steroids make things worse in Pandas kids. It's been reported that steroids are contra-indicated in TS patients. So I think you do need to be sure you have Pandas and not Tourette's. But the majority of parents on this forum report a favorable response. I think it's a very personal decision - one you have to make in the context of your own child and in consultation with your doctor. I'm in no way trying to push one way or the other. Every treatment has risks. Steroids are not a no-brainer. But I would not let this one statement scare you, especially as there's no study cited to support this claim. It just doesn't match with what most of the Pandas doctors and researchers have experienced.

I think we are all finding that there are many paths to healing and many here have very strong feelings about various treatments and approaches. We all have a passion for healing our own kids and helping others shorten their own journeys. Lyme is certainly one avenue to explore. It was an important part of my son's recovery. But I do not regret giving two separate month-long steroid tapers over the two years we searched for answers. It was a choice between being my son being disabled and being functional, between his feeling stupid and hopeless and his feeling pride in academic accomplishments and feeling "normal" again, even if the improvements only lasted a few months. It was a chance for us to see what was possible and kept us fighting for nothing less. The damage done to my daughter, suffering the wrath of an OCD-driven verbal attack from my son, was just as important in our decisions as the risk that steroids could give (the undiagnosed) lyme a leg-up. I'm in no way advocating steroids for a lyme patient. I only point out that there are many factors that need to be considered and sometimes treating symptoms is critical while you search for more lasting answers. There is a reason that OCD is considered one of the 10 most debilitating diseases by the World Health Organization. It isn't simply an inconvenient symptom. What is the right thing for one family may be different than what's right for another. Some may have serious reservations about one thing or another and I think it's healthy to ask questions and not fall into group-think. But given the complexity of our kids' situations, it is ultimately up to each parent to decide what risks are acceptable or not. S&S - I agree that you should look into what could be triggering your daughter's symptoms and perhaps consider adding another doctor to your team. But try to not become so worried about making a "wrong" decision that you become unable to make any decision. It can be overwhelming. There are no quick or universal answers. Focus on baby-steps and bringing symptom relief as you simultaneously work on additional lab tests and longer term plans. Only you know how much your family can handle at one time. Best of luck in your next steps.

Your response made me laugh...some people do X and are happy with the results. Some people do the opposite and are happy with the results...how sadly true! When I joined this forum 2 yrs ago, I think we all felt that there was one disease, one path to health and all we needed to do was get to one of a half dozen doctors and we could beat this thing. Now, I pity the new members who have to jump into this whirlpool and learn not just about Pandas but also about lyme, mycoplasma, and on and on... Shadowtails - to answer your question - yes, some people go to an LLMD (lyme literate doctor) to investigate things other than lyme. My son is Pandas/lyme but my daughter has something going on but we're not sure what. So we're working with the LLMD to investigate possibilities. You can work with a DAN in a similar manner even without autism. I think these doctors' "claim to fame" is mostly that they specialize in areas that have no clear-cut answers. They're used to being in a medical maze, with dead ends and obstacles. So along the way, they've developed a broader perspective and are less married to any particular protocol. They suspect many triggers, not just one. But that doesn't guarantee they have all the answers either. At best, you end up working with one or more doctors who try to help you unravel your child's particular issues. It can be very confusing and you find yourself trying to understand research papers and medical jargon that are way over your head. Along the way, you also part ways with a lot of cash you had planned to use for things like college and retirement and mortgage payments. You're far from alone in feeling like you're groping in the dark and going broke in the process. When I get really bogged down, it helps me to make lists - what I know, what I wonder about, what I've ruled out, etc. I usually find that this generates a list of questions, with some lines of questioning looking more promising than others. Then I head to the doctor with my binder of charts and notes and questions and take another baby step - hopefully forward not backward. It sounds like the lyme test you did was not Igenex and that may be something to put on your list of questions. You may also want to revisit mycoplasma and strep titers. Keep digging, keep questioning your doctor. If you find your child isn't responding the way you think they should, consider adding another doctor to the team. No one will have all the answers and you won't be "cheating" on the first doctor by adding a second. Kimballot - one theoretical question for you about titers...I know that having high C3D levels can give you a false negative for lyme b/c the lyme antibodies get bound up. Do you think the same thing could happen with strep or myco titers? You know how many of us say our kids don't produce elevated strep titers despite confirmed strep? Maybe we tested at the wrong time, or maybe the kids are immunodeficient. But could it be that their strep antibodies are bound up in C3D complexes and just don't show up? Why would it only be true for lyme? Just thinking out loud, one geek to another....

Take pictures of the rash and swollen eyes - you may in hindsight learn it wasn't hives but something else. Good to have documentation regardless. Is he still on abx? Did you re-check titers to make sure the strep is gone? Also, realize that CBT is a general behavior therapy - very good for anxiety. But for OCD behaviors, you need to do ERP - a specific form of CBT specifically for OCD. Check with the therapist to make sure she does both forms of therapy. Also, ask your son to go 60 seconds without scratching his scalp (or 30 or something that's a small but significant stretch of time). If he can't go that long without scratching, it may be a tic and not just due to itchiness. You can also go after the dandruff to relieve the urge (may not help but gives you something to focus your energy/anger on while you wait for doctors appts). I hope you get to the doctor this week. Sounds like you can use a break...Best of luck!

You can also find helpful information at www.pandasresourcenetwork.org and www.webpediatrics.org Given your cycle of illness, you may also want to look into lyme (or visit the latitudes lyme forum). Pandas and lyme (or bartonella - another tick-borne illness) can both present with similar neuro-psych symptoms. You should also read the posts under the "helpful threads" heading at the top of this forum page. But don't let yourself get overwhelmed. These things can suck you in and make you lose weeks of sleep. It's horrifying to think of bacteria doing so much damage to your child. But remember that as awful as Pandas (or lyme) is, you do not have to find all the answers in one all-nighter or one weekend on your PC. We've all been there. If your child does have something like this, it will be a marathon, not a sprint back to complete health. Take care of yourself - your family is going to need you. And we'll all answer as many of your questions as we can.

Young kids are great candidates for Cognitive Behavior Therapy (CBT) and Exposure/Response Prevention (ERP). I highly recommend a few books for you - "What to do when your brain gets stuck" (which may be a bit over her head but it will give you, the mom, some great coping ideas),"What to do when you worry too much" (which is easier for a 6 yo) and "Tiger, Tiger is it true?" which isn't about OCD but about doing a reality check when bad thoughts enter your head that aren't true. You'll have to help bring these concepts down to her level but they're a great way to give her coping tools - it's terrifying for a young kid to not understand what's happening and learning tools that empower them is incredibly helpful - now and for the rest of their lives.

When I look back at my own journey, I can't point to one single doctor who did all the testing or had all the answers. It was more like a scavenger hunt, or peeling an onion. Our neurologist was able to give us the neuro exam and found choriform movements and had good insight into our Cunningham results - plus the Pandas treatments that matched our comfort zone and gave us significant remissions (just not permanent ones). Our immunologist helped us rule out mycoplasma and gave us important information with C3D complexes and ordered our Igenex tests(which helped our LLMD see that indeterminate Igenex lyme bands would probably be positives if not for the high C3D levels). Our LLMD helped by knowing the right combo of abx and the right balance of supplements/detox so that lyme treatment could be successful without making DS feel like he'd been run over by a bus. Each doctor was with us for part of the journey. Each is still on the team - just on the bench/on standby except for the LLMD while we treat the lyme stuff and see what, if anything, is left after that. But no single doctor is driving. I don't hide anything from them. They all know we see other doctors and they all know what the kids are taking. But I don't think there's any doctor who can be fully knowledgeable in all the areas that affect our kids. I'd be suspicious of any doctor who made that claim. We train doctors to only specialize in only small pieces of the body or specific diseases. Or we train them to be generalists, with no expertise in any one area. So the journey is about finding a clue, following it, then looking for more clues down more paths until we get our kids back. Some kids will get lucky and find lasting health right away, other cases will be more complex. I used to come to this forum looking for "the" answer and "the" doctor. Now I just come looking for ideas and support but with an expectation that my answers will be specific to my kids, not any sort of universal truth.

About a month after the conference, you can buy DVDs of most of the presentations. Usually about $20/per session. So that's an option if you can't go. Check their site in the June/July time frame.

We don't have full blown refusal with DD6 but she was starting to have panic attacks as she got ready for school until she got on the bus. While she loves school, the OCD fairy would tell her that she would have a terrible time, no one would be nice to her, she'd miss me, etc. Some days, she got really really upset. It killed me, but I was determined, if at all possible, not not let the OCD win. So we focused a lot on making the OCD fairy the enemy and how awful it was that this mean fairy wanted to take away the joy of going someplace that she loved to be. We sang a lot of songs and tried to make DD laugh during the (seemingly endless) wait for the bus. To the tune of Jingle Bells, we sang "I'm not scared, I'm not scared, I'm not scared at all. The mean fairy has a fat butt and I'm going to squash her now-ow" Guess I will have to learn some easter songs soon...something to the tune of Here comes Peter Cottontail... Many days, she got on the bus in tears, with the kids and bus driver having very strange looks on their faces. But every day when I picked her up, she'd be happy not only because she had fun, but because the fairy didn't win. And we'd celebrate. One day I put a large sign on her bedroom door about how she was the bravest girl in the land. Another day, she got a donut. Thankfully, she's young enough that she still feels she has to be obedient and when an adult tells her she has to get on the bus, she will. At the same time, I was begging for antibiotics. We started with zith (from the LLMD who's trying to help us figure this out) and it helped for a few days. But then she developed a sinus infection and the pedi put her on omnicef. That was like a miracle. It all went away within a day. We're now 3 days post-omnicef and back on just 125 mg/day zith and things are starting to creep back in. Having so many snow days doesn't help, because it reinforces how nice it is to stay home with mom. But the fairies are coming back in other ways. School is just one trigger. It's really not about school. It's about anxiety and panic attacks over any change or challenge. So we're headed back to the LLMD in a week, with my 6 weeks of charting, and if she continues to slide on just the zith, you know what I'll be lobbying for...(BTW - we do not know id DD is Pandas or Pitands or lyme - we can't find a trigger - we only have the drastic response to abx as a guide). but in the meantime, lots and lots of ERP and rewards. I may need to start giving motrin a half hour before the bus, or benadryl. Sorry I don't have a magic recipe for you. You've been dealing with the same fairies we have for a lot longer. I guess just keep re-reading Brain Stuck and maybe "Talking Back to OCD" now that your girls are older. That book explains that it's the child's job to fight the OCD and the parent's job to be the coach. Now that your girls are older, maybe it's time to shift some more responsibility onto their shoulders when in the past, it was more mom's job to help them and in some ways, do the ERP for them. I'll be thinking of you...

We tried a number of doctors, but the local ones were not at all helpful. We've successfully worked with two Pandas specialists and each has contributed to our knowledge and helped bring our son one step closer to health. But eventually, my son looked "treatment resistant" - something was still keeping him sick despite aggressive treatments - and we then discovered lyme and co-infections. So now we primarily work with an LLMD but I still consider the Pandas doctors as part of our team (we just don't need them for current treatment). I couldn't find much online either. So what I'm about to explain may be completely incorrect but it helps me get my brain around it...When there's an antigen (an infectious agent) in the body, and the body isn't doing a good job of killing that antigen, one defense mechanism of the immune system is to produce immune complexes. These complexes are like sticky blobs that can bind to the antigen and immobilize it. (If you ever saw the movie The Incredibles, think of when Mr Incredible gets caught in Syndrome's secret office and gets bombarded with sticky tar balls until he can't move). The complexes don't kill the antigen - they just immobilize it. If you have high C3D complexes, it's a sign that you have some sort of chronic infection that isn't being killed. If you start treatment with the right antibiotics (and this is only my understanding - I could be way wrong) then eventually the antigens that are bound up in sticky complexes get released and killed and the C3D levels go down. Someone please correct me if I've gotten it wrong. M.PNEUMONIAE AB - this stands for Mycoplasma Pneumoniae antibodies (a measurement of whether the body was exposed to this antigen and produced antibodies to try to kill it) IGG - this is one of 5 types of immunoglobulin protiens (IgG, IgM, IgE, IgA and IgD) IgM is generally a sign of current or recent infection. IgG is a measurement of some previous exposure but not necessarily current infection. (again, I'm no expert on this) don't know what EIA means 3.09 (H) means the measurement of this antibody was 3.09 and is considered a high/above normal result for this lab. I'm not familiar with a western blot for M. Pneumonia. Are you confusing this with lyme/Igenex? Mycoplasma is a different infection. It can sometimes be carried by ticks, but it can also be spread in other ways. But this lab result doesn't have anything to do with a lyme test. None of us here will know your daughter's full medical story and none of us are doctors. So take this as my opinion only. I can't know if IVIG would benefit your daughter. But my personal experience is contrary to this. Just because a child doesn't respond/get to 100% on one anitbiotic does not mean IVIG has to be the next step. I think you need to be sure of what is keeping your daughter sick. If it's a Pandas reaction to strep and there's no strep left, then maybe IVIG makes sense as the next step. But if the trigger is Mycoplasma or different infection, and the source of the infection hasn't been eradicated, then my impression is that IVIG may help but won't be the entire answer. If it were me, I'd probably keep looking for additional tests or different types of antibiotics before IVIG. But again, I don't know the full medical story and am certainly no doctor. Best of luck in your struggles. I know all you want is to help your daughter. I hope others can chime in with more info for you.

For those who have treated clostridia - did you experience any "worse before better" or die off/herx reaction at the start of treatment? If so, maybe Wilma should be prepared for a 4-5 day worsening and have some charcoal on hand. Maybe this isn't an issue - I don't have any experience. Just wanted to raise the question.

I found this from http://organizedwisdom.com/Florastor_Side_Effects Research Notes on Florastor Side Effects Florastor (Saccharomyces boulardii), a natural yeast-based probiotic supplement used to promote gastrointestinal health, has little or no major side effects. The side effects that are most commonly noted are constipation, increased thirst, and increased gas.1 Other more rare side effects occur mainly when administered through a central venous line. These side effects include the possibility of fungemia, the presence of fungi or yeasts in the blood.2 Some people who are sensitive to yeasts may have an allergic reaction using Florastor and should contact their physician if they experience difficulty breathing, hives, or chest pain.3 Could what you're seeing be related to yeast?

This is hard, because if you hit her with everything you know all at once, it will overwhelm her. Since she doesn't have an obvious trigger, take the "peeling the onion" approach and explain that it could be many things and the goal for now is to manage symptoms (introduce the concepts of CBT/ERP) and to rule things out. My daughter has been on our radar for two years, but only recently had symptoms severe enough to consider a Pandas or lyme dx. Some easy, insurance friendly tests that most pediatricians can/will order: ASO, Anti DNase B Mycoplasma yeast (Candida blood test) H Pylori she can do a standard western blot, which might be informative, but she'll have to understand it isn't conclusive - so you'll have to decide whether she's the kind of person who is willing to look beyond "conventional wisdom" in this area If she can afford it, you can suggest a Cunningham test I try to recommend people test C3D immune complexes because high complexes can give false negatives on other tests, but that might be a stretch for a pediatrician to accept. If the doctor is willing, a 3 week trial of abx might be telling. We also did a battery of other tests, including an endoscope, poop tests, on and on. Igenex is only slightly lymey on 41 and an ind IgG 39. Everything looked normal yet my daughter kept getting worse. We're awaiting Cunningham results. But we started her on abx and within 24 hours she was much much better (but strep titers were negative). So we still don't have a diagnosis, but we have a temporary management plan. Start slow - what you know will spook her. Let her digest and ask for info instead of bombarding her. But try to stay in touch as much as possible. She's going to need someone who understands.

Agree with all the above posts. While you are waiting to get into a doctor, make note of anything else that's unusual. Check his neck and armpit lymph glands (and other lymph areas). My son often had a swollen gland only on the left side of his neck - asymmetrical swelling can be a symptom of tick-borne illness). Take photos if you think the swelling will show up, or take a washable marker and circle the swollen areas and then take a picture, so you can document the size of the swelling. Make note of what helps the pain - motrin, charcoal? and when the pain is better or worse during the day. Is there any tingling or pain elsewhere - soles of feet? The cause can be several things. But one thing for sure is that it isn't normal. I hope you're able to find relief quickly.