Malke

Hi Colleen, DD is taking 200mg (1tsp) daily of Zithromax, and she weighs around 42 or 43 pounds. I did get a throat swab for strep today b/c of a really bad sore throat, but I think that'll come back in 24 hours and I'm not even sure it is strep -- I was just a little worried, as I'm sure you understand, and had to make sure. Other than that, we haven't yet tested myself or my husband for strep (just the three of us here). How should we test for being strep carriers? A throat swab, right? And tell our docs to grow it out for the full 72 hours, like you mentioned? At that point, I think I read that we should go on a course of abx ourselves if we test positive, and then get tested again? Thanks for your perspective on the abx. My instinct would be to get her off abx as soon as possible -- daily abx from age 3 months to 3.3 years (for a mild birth defect in the urinary tract, now resolved) is what got us into this mess in the first place -- lots of yeast and leaky gut from that, which exacerbated her the sensory issues she was born with and probably made her susceptible to the PANDAS. But I may reconsider and keep her on them, especially if she seems like she's doing okay, with no side effects. We're giving custom probiotics (no strep strain) and she seems to be doing really well in her gut, all things considered. There's been less signs of yeast than before we started abx. Why do you think our kids need a longer course of abx? Thanks again! Malke

Tammy made me think of another question I have for the doc *and* y'all... DD5 has been on abx for three weeks, continues to improve, but how long do I keep the abx going? Our new doc-but-not-expert gave us a 3 month Rx for zith, but I'm not sure that's wise. My current plan is, if everyone is healthy in the family, we will go off zith in a week or so, but keep with the ibuprophen and/or other anti-inflammatories. Then watch and wait. However... I have a wicked sore throat today, but the minute clinic rapid strep test was negative -- maybe I need to wait/suffer another day before something would show up? They're sending a second sample to the lab and I'll know tomorrow. I can't believe this isn't strep throat -- It's exactly the same presentation as last year (and before then I hadn't had strep in over ten years...), I will keep dd on abx at least as long as this is unresolved. Thanks so much... Malke

Hi all you awesome moms and dads, I just got the results from some basic bloodwork our PANDAS-aware (but not expert) doc ordered. We'll be seeing her on Friday, but I wanted to see what you think, too... A little background -- dd5 had a major PANDAS-like exacerbation the last two weeks of January, but it had been building for a while. When we got the bloodwork drawn, she had already been on abx (zith) for a week (I wasn't going to wait, it was that bad -- could barely talk at times, horrible sleep, raging, defiant, OCD really high, first-time tic, etc.) She is doing MUCH better on abx and has only been getting better, not worse. My biggest questions are on the strep tests: -ASO titer was 33, which looks low considering the range is 0-640. Does this tell me anything at all??? -AntiDNAse B titer is <70 in a range of 0-375. What does this tell me? Also: TSH 3.32 (looks like normal range) EBV -- looks like it's negative She also ordered a CBC and some blood chemistry, which all basically looks normal. I *KNOW* something is wrong, and I think these results only tell me what it *isn't* if you know what I mean. We'll see what the doc says, but what else should I be doing/looking for??? What kind of referrals or other tests should I be asking for? Thank you so much. Malke

The Custom probiotics (200billion CFUs, half in am, half in pm) we use come as a powder. Since my daughter can't swallow pills, this is perfect. I add it in with a little applesauce and it's tasteless. I do understand about too many pills though! She's got five supplement times a day -- pre-b'fast, b'fast, lunch, dinner, bedtime. Most of that is either in a little applesauce or in a drink, with some chewable tablets. hth, Malke

There are lots of different approaches out there. How about starting with thinking like your grandmother or greatgrandmother did? A diet of real food. For breakfast eggs and toast. For lunch soup and a sandwich. For dinner a roasted or baked chicken, some mashed potatoes (from real potatoes), a salad or peas, and some whole grain bread? If you aren't 'cooking' right now, I think it would be too big a jump to the variety of specialized diet approaches out there. Also, I agree with the idea that you might think about trying some food sensitivity/IGg testing for intolerant foods...that might help focus your efforts. For instance, if you really did need to pull gluten (wheat, rye, barley and oats) and casein (all milk products and processed foods with casein in them) then you would very quickly be able to find a lot of on-line resources to help you transition to your new diet. I always tell my daughter that we need more 'slow foods' (proteins like nut butters, turkey, beans, healthy meats) and whole grains) to keep away the yeasties. I tell her the yeasties are 'lazy' and only like to eat the 'quick and easy' foods (which you know are highly processed with corn syrup, white flour, and additives, or simple starches like potato chips, crackers and pretzles, and even too much fruit and juices). Good luck and keep asking questions!!! Malke

Thanks everyone. I think I still have PSTD about the seperation issues. DD nursed until 2.9 yrs old, and was carried everywhere for her first couple years (sensory/regulation issues) and was never happy when others cared for her. We have also had traumatic partings at school for years. It eased up a little in K this year, but then the PANDAS changed everything back. It just spikes my mommy-anxiety for some reason. The dizziness I'm still not so sure. It's very mild, and comes when she's tired (like at bedtime or this morning). I've read the zith info and the Ibuprophen info, and nothing seems to match in the warnings sections. Her blood sugar has been stabilized for months, thanks to our diet and yeast protocol. AT least I don't have to deal with that in the mix of things. Thanks again. I guess i was just having a hard day. I appreciate the ideas and support. Malke

Hi, My daughter (5 1/2) has been complaining of being dizzy, mostly at bedtime. But this morning she was dizzy again and kept bumping into things and saying she was tired. She had a great night's sleep. I've noticed some extra bruises on her too. She's on Day 13 of Zith and ibuprophen. No real tummy issues to speak of. BMs normal. Just wanted to see if dizziness is part of the deal or if I should be taking a closer look. She was extra clingy this morning too. I hate sending her to school on days like this, but I knew it was the Valentines' party and she might get really disappointed to miss it. Her Kindergarten teachers are very patient, but they don't understand the PANDAS (despite a letter from me about it) and, while patient, attribute everything to 'normal' kid emotions, if that makes sense. Isobel will come home and report "The teachers don't help. You make everything better." Sweet, but heartbreaking, because I know she means that I"m her comfort zone, especially on hard days. It's days like this I wish we homeschooled. I'm self-employed and don't have a regular schedule, so I do have some flexibility. But there's important work coming up over the next week so if she's having a bad day I won't be able to keep her home. Before the PANDAS came along, she had SPD-related seperation anxiety, among other things, so I am used to feeling horrible after dropping her off from school. The SPD seemed way more under my control than the PANDAS. I hate feeling out of control about things like this. What do you do about school on hard days? Anyhow, thanks for any thoughts. Malke

We just switched from a probiotic with a strep strain to Custom Probiotic's D-Lactate Free. We give dd (5, 42lbs) half an adult-sized scoop twice a day, for total of 200 billion CFUs per day. We've been on abx for almost two weeks now and her gut seems to be in great shape, thanks to the probiotics. The company is great and you can call them to get help on figuring out which of their products is best for your situation. I like the idea Nancy had, too, about switching up the probiotics from time to time to keep the yeasties on their toes. hth, Malke

I don't have any advice to offer, but my thoughts are with you this weekend! Also, Isobel had blood drawn (first time ever) a couple days ago, and yesterday initiated some interesting play where her toy cat had to go for a blood draw and later we had to write down 'how she was feeling' -- it was interesting that there were the medical records and the home records...sorta like real life. Hugs!

Thanks to everyone who responded to my posts over the last week. Thank you so much. In the last week we got dd started on abx and have met with a doctor who has treated PANDAS before in her practice. She's not an 'expert' but she did know enough to order the following tests, which we'll get done this week: ASO AntiDNAse EBV CBC CMP TSH We'll see what shows up and go from there. I think it's a great starting point. This new doctor doesn't normally recommend the abx we're on currently (zith) but since dd is doing well on it so far, we'll stick with it. After the bloodwork comes back, she'll decide whether to be on a treatment dose or a maintenance dose. We'll stick to 1 dose of ibuprophen a day for now, but I'm researching some other, gentler anti-inflamatories. I also met with our DAN today. We have fabulous results on our second Organic Acids Test (OAT), which was done 5 months after the first. DD still has yeast issues but the original hight yeast markers are all down to normal and my daughter's nutritional *and* gut health is practically normal now. In case anyone is interested, here are the things have been doing on the supplement side for the past six months and will continue to do. THe things marked with a '*' are new things we're adding: Cod Liver Oil SuperNuThera (multi vitamin with extra B6) *Vit C 2000mg (up from 1000) *Custom probiotics 250billion CFUs a day (instead of ProBio Gold which has a strep strain) partially to balance out all the abx, but also to get those yeasties good and gone. Trienza and Nofenol digestive enzymes with each meal Calcium 750mg a day CoQ10 *Melatonin at night *Magnesium 400mg at night *Biotin to get the yeasties all the way gone I should say that these doses and specific supplements are based on the result from her first OAT. And, this is all on top of a gluten, casein, soy, corn and yeast free diet we've been on for the last year. WE never had an IGg done, but it was clear from the first week on the diet that food intolerances played a huge part in her sensory and regulation issues as well as her gut health. I'm sharing because I feel hope today. As parents trying to heal our kids, our perseverence and persistence and hope and effort and sheer force of will to help our kids DOES make a difference. I've been really weepy and on edge all week, but I have renewed hope that all this effort is worth it. Keep up the good fight!!! (And thanks again.) Malke

In my daughter (pre PANDAS) gut issues were most obvious in loose, smelly BMs (sorry to be so graphic!) and huge sensory/regulation issues. She never had a tummy ache. Once we removed intolerant foods (gluten, casein, soy and, later, corn), addressed her nutritional health with a barrage of supplements (we figured this out working with a DAN and the Organic Acids Test) and a yeast protocol we saw great improvements in her behavior, sensory issues and BMs. And then she got PANDAS... Anyhow, hope this helps. Malke

Hi, I'm meeting with a PANDAS aware pediatrician on Monday. She's about an hour from our house. Our regular ped was, thankfully, open minded enough to listen to my concerns and start us on a 10-day Rx for Zith, but she was clear with me she doesn't really know much more about it. I'm hoping this new ped will be able to offer me a little more guidance and help, including making sure we get to stay on abx for a full 30 days. So... What tests would be good to do at this point? DD has been on abx for 5 days now. Since we've seen improvements and no herxing, I'm thinking it's not lyme. We don't have a clear strep event, so I'm thinking she might be more PITAND than PANDAS. What tests might help us figure that out? I'm thinking that eventually we'll try to get an appointment with Dr. K in Chicago. But, since I think I've caught the PANDAS pretty early, I can't help feeling like this is a really important 30 days to be figuring things out. Thanks so much for any suggestions. Malke

Julie, We started ibuprophen the day before we got the abx. I saw immediate decline in her agressiveness and anger outbursts and her 'grrrrr' sound. She slept better too, more deeply, which has been horrible for the last month or so. I'd been giving her 2 doses a day for the last four days and today I thought I'd bring it down to one, since I'm no fan of this stuff. Everything was great all day long but by late afternoon it was all back -- tantrum, physical agressiveness, grrrrr, angry at nothing, tic, OCD, everything so I dosed her at 5pm and she's heading back toward even-keel now, about an hour later. I'm not sure what to do in the long term, but for now I'm keeping with it. Hopefully we'll be able to phase it out some time soon... best, Malke

This is good to hear Bill. I just figured out a few days ago that if I raised the intensity of my voice and talked to her like she was two she'd finally pay attention. This works especially well at bedtime. And, surprisingly, she does not take offence at my 'talking to the little baby' voice. Coming in physical contact helps too -- a hands-on approach. I could never do that before when her SPD was worse, but she's lost that due to a year of diet and biomed intervention. Malke

That sounds like what a DAN (Defeat Autism Now) doctor would do. Our dd is not on the spectrum but we've been working with that approach for the last year and have successfully treated her SPD issues. I highly recommend a DAN in general. Here's a website with a list of doctors in each state http://www.autism.com/pro_danlists_us.asp When I was searching for a DAN in Indiana I actually found a different site where each DAN had filled out an on-line interview form so you could get a sense of their focus, availability, philosophy etc. I can't find that right now, but perhaps if you searched around a little... hope this helps, Malke

So helpful!!!! Thank you!!! Today she's an over-hyper happy and I'm keeping her home from school until Monday. She's on day three of zith and I want to give it a bit longer before I reintroduce her to society. This kid has been 'hating' and having issues with all her classmates for the past two months and I've been so embarrassed. Now I have some understanding about what's going on I feel quite a bit of relief. Malke

Hi, I just recently identified PANDAS in dd (5). She's on day 3 of Zith and ibuprophen. It's still too early to tell exactly how everything is going, but I have been watching her so closely that a question has come up about her behavior: DD has been hyper before (yeast issues) but never hyper and spacey at the same time like she is these days. I'll give her a simple direction ('take a bite of your breakfast') and it's like she hasn't heard me. If I didn't know better it would seem like she was intentionally ignoring me. I'll have to give her the same direction multiple times and physically redirect her body to get attention and to make sure she does what she needs to do comply with my directions. Also, I'll tell dd about something we talked about or agreed upon yesterday and she'll tell me she doesn't remember. In addition to her anger issues (getting mad at house numbers!? Telling classmates and teachers she 'hates' them even though they've been nothing but sweet to her) and her seperation anxiety, this spacey/non-compliance issue seems to be the other major thing her teachers need to know about. So, I'm trying to figure out what is going on before I write them about the PANDAS. Any resources (personal experience, on-line, or books) would be greatly appreciated!!! Gratefully, Malke

Peggy, I guess when someone else looks through those same glasses, it can look really different, huh? Thank you for this wonderful insight. Julie It took me 10 years of following the "expert's" advice and trying to deal with this behaviorally before I realized that my child doesn't like it when this stuff happens anymore than her caregivers do. Poor kids, trying so hard to "be good" and just never can seem to....this is a tough one on self esteem if the adults do not understand what's going on. Once I began treating this w/ understanding, validating her struggle and sort of coaching her through it- this symptom became easier for both of us to deal with. It has been really helpful for me to be completely transparent (when I know I can explain it simply enough) to let my daughter know that her body is unhappy and why, but also that she has some control in the situation. I tell her she can use her 'big girl brain' to remember to take deep breaths for calming down, for remembering that it is her brain and not *her* that is mad at the world, etc. I did this with her SPD and I am doing it again over the last few days and it seems to be helping her. I can't imagine how out of control she must feel. Part of her reactions must be from confusion and angst about what is happening to her, and why she is feeling the way she is. I've noticed that even if I say these things while she's in the middle of a fuss or an episode, once she gets to a calmer place (even days later) she is able to use the coaching and the explanations I've given her to help herself. Best to you Julie! Malke

This is all helpful info! I think I will go low and slow to start, but her system is already used to probiotics and her yeast issues are resolving, so now I'm thinking we'll be okay. I just wasn't sure what it was in the probiotics that would cause an exacerbation of PANDAS or why it would be 'too much' for a kid's system, but at least I'll know just to be careful and watchful (as always, lol). DD has been on ibuprophen 2x/day for three days now. This is her second day of zith. The ibuprophen really helps around her tired times or when she's having a growly/mad at everything (even house numbers or trees!)/highly agressive meltdown. I've noticed she's been sleeping a LOT better (no night fussing) since starting the ibuprophen. Today she started the day horribly, but after ibuprophen in her system for 1+ hours she calmed down. School's closed, we were together all day yesterday out of the house b/c power was out, I'm exhausted and letting her watch videos and make things on the bed all day. We're on a do-almost-nothing day and it's helping -- all I"m getting this afternoon are some growly faces and then back to her sunny (although ticcing) self. I think that stress management is as much part of the game as anything else. I'm prescribing her daily bubble bath therapy along with Bach remedies and catnip or chammomile tea! My heart goes out to her when she's in the clutches of her OCD. Today she's started asking "Am I always going to be doing this?" (meaning the OCD). She had a dream that her house was on fire, she has intrusive thoughts, her brain is literally under attack. I am so glad we started Abx finally, because it was getting worse quickly. Thanks again, Malke

Hi, DD is now on day two of Zith, with a bottle of Custom probiotics coming fedex tomorrow. But I've been reading here recently that probiotics can actually exacerbate the PANDAS symptoms, and now I have a lot of questions. DD has struggled with yeast all her life, so not having probiotics is not an option. We can't do kefir since she's GFCFSFCF etc. and I know any form of dairy inflames her system. I'm thinking I should just start with very small doses of the new probiotics? She was formerly taking 2-3 capsules a day of Kirkman ProBio Gold so her system is used to some form of high powered probiotic. I'm just trying to figure out how to manage her gut issues and her brain issues at the same time! thanks, Malke

Thanks everyone, for your *amazing* feedback. Here's where we are now (Wednesday afternoon): Despite 1/2 an inch (or more) of ice and power outages, we have finally gotten a Rx for Zith (10 days to start, but another 10 days supply is on hand)!!! Our Ped is totally helpful and talked to me at length on the phone this morning about what she can offer (including referrals to psychiatrists to help with the OCD). I am still overwhelmed with big the picture, but for now I will watch, wait, record, rate behaviors, and breathe. I guess if the abx work, then I need to figure out how long to stay on them? Our Ped can't help with that info, so maybe I go to one of the recommended docs nearby for more support with abx? I also ordered some strep-free probiotics today, will get them by Friday. So, for now, Zith 1ce/cay, Ibuprophen 2ce/day, probiotics 2ce/day (away from Zith) and stay on GFCFSFCFYF diet to keep inflammation low in her body. Thanks again, everyone!!! Malke

Thanks Sarah...your support means a lot to me.

Hi, After mommy-gut alarms for a couple months that I finally listened to, and after a lot of reading as well as support from on-line friends in other forums, I am almost 100% sure that dd (5 1/2 also with SPD relieved by changes in diet, yeast protocol, etc.) is a PANDAS kid. I have so many questions I barely know where to start, but my biggest ones are: a. How do I get our pediatrician to really take this seriously? I delivered a letter outlining the issue to her offices on Monday, but haven't heard back. I called the offices again today but she was out of the office on an emergency delivery. I made it clear that I was unashamedly begging for antibiotics so that we could catch this thing quickly. Whether the abx work or not we'll still have some kind of answer, right? Hopefully she'll call tomorrow morning. b. I have a couple recommendations from our DAN in Greenwood, IN for doctors in the Indianapolis, IN area who are experienced with PANDAS -- would it be better to just start there (instead of waiting for our ped)? Or, is there anyone on this forum from Indy who might have a recommendation for someone in the Bloomington/Indy area? c. Do you tell your kids' teachers about the PANDAS? If so, how do you explain it? I think it would be helpful for dd's teachers to know -- dd is often unexplainably angry and verbally agressive with other kids. They're pretty flexible and understanding, but how does this disorder play out in a social setting like school? Are there any specific supports that can be put in place? I'm really scared. The SPD I could handle. The diet changes and the yeast protocols and everything I could handle. PANDAS seems so much more out of my control I'm just freaking out. After a year free of gluten, casein, soy, corn etc. I finally felt like I had the daughter who was supposed to be there in the first place. I was never 'why me' about the SPD. It just always seemed like something that had a solution and I just had to find it. Now I am totally in a 'why me' place, feeling sorry for myself and angry. Now that I know what's probably going on I am able to interact with my daughter without making things worse by overreacting, but I can barely focus on the rest of my life. If/when I hear back from her ped and when I get some abx started then I know I'll have something to focus on, but all this waiting around is driving me crazy. Sorry for the long post but thanks for any help, Malke