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  1. Thanks so much for responding, maybaby. How long did it take you to see a change in behavior on GF diet? And when you say you started treating for lyme after a year, do you mean you treated with abx? Did that not undo all that healing? We did not test for celiac, I don't think I have to go looking for that with that positive blood allergy test... Also, she does not display any symptoms of poor gut health, aside for sugar craving and very poor appetite/intake of regular food. But she wasn't always like this, so I doubt it's celiac. I will definitely put her on a good probiotic. I've read on here that we should avoid one with any strep strains in them...
  2. Very interesting--the comparison between asymptomatic allergy and asymptomatic strep.
  3. Thanks for responding. If I'm understanding you correctly, you're saying that it could be allergy-triggered PANS, or an exacerbation of PANDAS/infection mediated PANS. And that cutting out *gluten* (not just wheat?) is a good idea regardless. Did I get it right? Should I cut casein too while I'm at it? Will cutting gluten (and dairy) be enough, as opposed to cutting all grains like in GAPS/SCD? Do you think this alone can cause a reduction in symptoms? As of now she's not on any other treatment. Nor did she get an official diagnosis. There's a PANDAS-literate pediatrician in our area but she doesn't accept insurance and charges $$$ for consults, and the only treatment approach she offers is long, long term abx, more specifically zithromax. Just putting this in here in case anyone reading has an answer: although my daughter's not vaccinated, her symptoms are leading me to believe that her gut is somehow compromised. I was always under the impression that healing the gut and antibiotics are mutually exclusive, yet from perusing some of the threads here, it seems that some do both at the same time. Just wondering how this works. My daughter's never taken antibiotics in her life (except during her birth when I got IV penicillin for strep . My gut (excuse the pun ) tells me we'd see a drastic reduction in symptoms with just a short course of abx, yet for some reason I'm so, so hesitant to go this route. Any advice?
  4. I recently had my 5yo daughter tested for PANDAS due to behaviors that seemed to really fit the bill and that in hindsight, could have began immediately following a fever or unknown origin. The following were the results that came back abnormal. ASO: 395.7 Anti DNASE b 554 Mycoplasma Pneumonia IgG 112 (dr says this is an insignificant elevation) Easinphils 0.5 IgE 1611 (!!) -- this prompted the doctor to order basic allergy panels. Wheat came back at 0.13. Said daughter has never had any kind of classic allergy symtoms or reactions. From my preliminary google research, these food allergy panels have many false positives... Just wondering here if it's possible that just the wheat allergy alone is causing PANS like symptoms? Or is the elevated IgE indicating an inflammatory/autoimmune reaction going on and the allergy is just a false positive? Dr says elevated strep antibodies are high but not conclusive... Or is it all the gut/immune system/brain connection... Would like to know so we could know which direction to take with treatment. Symptoms are relatively mild right now, primarily jumpiness/impulsivity/silliness (looks ery much like adhd, but I know my daughter doesn't have adhd), mild insomnia and lots of food restrictions. But we've had tics, stuttering, anxiety, meltdowns, rages, agression in the past, these seem to be mostly resolved but still rear their head every now and then, especially after an illness or when tired... I know we can just cut out wheat as a trial and see what happens, but because of the food restrictions I don't want to go down that route without a little more clarity. Been contemplating GAPS/SCD but hesitant for the same reason. Would really like to avoid abx if at all possible... Would appreciate any insight.
  5. Hi, I'm new here. I know there are so many threads here with similar titles, but I'd really appreciate any and all input, as we're just starting out on this journey and I suspect my 5 year old daughter may have (mild?) PANDAS. Please bear with me, this is going to be long. I don't know when I started worrying about her, but I know there was a time when I didn't. She was, and still is, generally a well adjusted, well behaved, obedient, very bright child. I remember after a bout with fever that I assumed was a virus early last spring was the first time she has an "episode" that lasted about 1-2 weeks after the fever ended. The symptoms she had was basically meltdowns/tantrums over the most unreasonable things, like a typical 2 year old's temper tantrums, but with aggression. She'd try to bite me, hit me, hurt her brother. And then suddenly the tantrum was over, and she'd melt in my arms. Until she fell apart over the next littlest thing. These tantrums faded after a while, but now these episodes repeat themselves every time she has a fever, right after the fever breaks, in a predictable way, except they don't last as long as that first time, more like a few days. During a fever she's like her old sweet self. There are a bunch of other symptoms that I kind of believed were related but didn't know how until I started looking into PANDAS. Some of these have come and gone, some of them are constant. I don't know when they started, if it was before that first episode, at the same time, or after. She's developed a mild, intermittent stutter, and she makes a kind of ehmm sound which almost sounds like she's saying umm and thinking about what she wants to say, but I believe is actually involuntary. Constantly biting her nails, picking scabs, recently started biting inside of lip. Refuses to walk more than a veeery short distance, complains of foot pain, wants to sit in a stroller. Always kind of tired and lethargic and cold. Insomnia -- has a very hard time falling asleep, and night-time fears, wants me to sit in her room with her all night. Separation anxiety -- this one's relatively new -- with have a complete melt down if I leave the house without her. Some regressive behaviors: thumb sucking (this one's gone), chewing on everything (also gone), laying on the floor, talking about wanting to be a baby again, wanting a bottle and a pacifier, baby talk, sitting in high chair, wanting me to hold her, dress her. Anxiety or even OCD about missing the school bus, like she's frantic all morning and constantly looking out the window. Oh and huge changes in her eating habits. She used to be a great eater, now she hardly eats. Super picky, and tiny appetite. She claims she's starving, exclaims about how yummy the food looks, takes 2 bites and then is done. This has been getting worse as of late . She also lost interest in many of her toys, needs to be kept constantly busy. Often repeats herself, even if she knows I heard her. I think (maybe?) many of these behaviors can be understood as a child just being "difficult" or "immature" but I know this is not her!! It's like she was possessed. She even gets this look sometimes like she's embarrassed by how she's behaving but can't help herself, or is confused by her own behavior. She's does wonderfully in school. Her teachers can't stop praising her, she's at the top of her class, gets along with friends, is happy and outgoing. The other thing is, she's pretty "disciplinable". She responds pretty well to incentives and bribes (for going to sleep nicely, for not crying when mommy leaves) and consequences (if you don't walk nicely, you can't come along.) Even "talks" like thumb sucking or bottles are for babies, you're a big girl, etc... She's kind of reasonable like that. She's never had strep to the best of my knowledge, though I'm definitely not one to run to a dr at the first sign of fever, and she doesn't get sick often at all. So all of you knowledgeable moms out there, does this sound like PANDAS to you? We haven't gotten any bloodwork done yet and I know that's probably our first step. There's actually a wonderful pediatrician in our area who's really well versed in PANDAS. But I'd like to know if there is genuine grounds for concern here, or this is me thinking into things too much.
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