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Sorry, you're having to deal with this as well. Could you be dealing with seizures or POTS (postural orthostatic tachycardia syndrome), vasovagal syncope? Just some ideas, good luck

Yeh, I'd consider nitrous oxide, too. In those with MTHFR issues it can lead to precipitous drop in B12. Hope you get it sorted out...

Hello. We are still trying to pin down our DS' flares. DD seems PANDAS free btw after many years but puberty seems to have sent it packing But DS is flaring, has been for a few months now. He hasn't got strep in throat or on teeth. We did think that strep teeth was the missing link when we found that a while back but it hasn't cleared this episode. We did a steroid burst a few weeks back and saw a 50% reduction in symptoms but they rose back to 100% after a few weeks. I was just wondering if anyone had seen severe tiredness with steroids. He has had steroids before with some success but has never gone off the wall or had issues with sleep like some kids. but this time around he looked super tired and had no energy at all, dark rings etc. He was particularly bad about an hour after each dose. I kept him home one day as he was just so listless. This is a child that normally can't stay still, typical energetic 7 year old. Anyways just wondered if anyone had any ideas? If this might be a hint at what's causing this particular flare. Thanks for any ideas

Great thanks the information

Hello. I was wondering if anyone had any recent experience with doctors treating PANDAS/PANS in the UK? I've seen the name Dr Hugh Richards mentioned in Birmingham and was wondering if anyone had seen him or any others that had been of any use. North West of England in particular but anywhere, really. Thanks

There was a PANDAS conference in Ireland recently with Irish drsattending, not England but could that be an option Here's the link to the site Pandasireland.ie/conference Perhaps pandas Ireland can point u to drs that attended or may know of drs in england Good luck

Hello. I don't come on much these days so not sure if this is old news but thought I'd post in case. Dd and do never seem to test positive for strep but I was convinced they'd had an exposure so swabbed at home, nothing, swabbed at drs, nothing but it was the streppy picture for us, sore throat, malaise, nausea.... Ds flared badly lots of OCD. Anyways, we did abx for DS, steroids. Both with tiny improvements in mood but not OCD. We'll jump forwa and dr wants to swab again but this time add teeth as she's started this recently in kids that don't respond to abx etc and lo and behold negative again in the throat but he comes up positive for teeth! I was shocked as he never comes back positive! So.. He's on an rx mouthwash for 3 weeks and she'll swab again. If it's gone good, if not there are more t hinges that can be done to get rid such as dental scraping etc but this is the first easier hit. So we'll see. We're 1 week in, mouthwash is being tolerated well and I thought I saw a lessening in OCD but maybe wishful thinking. I'll post our experience.....

I'm glad that my dd's story is giving some hope. I had felt we were moving away from PANS for a while with diminishing flares, less often and less intense.. probably coinciding with the earliest hints of puberty but was hesitant to post in case it all went to pot but it really does feel as though this may be it.... I can remember a telephone conversation with Diana Pohlman from PANDAS network many years ago, when she said they may grow out of it at puberty and coming off the phone and crying my eyes out with the relief I felt in just hoping that could be true. Seeing it in action in dd, makes it so much easier to deal with my ds with some emotional calm. Hoping for healing for all our children.

Hello Yes, she had her 1st and so far only period in September.. I know it's early days yet but this is by far the longest stretch PANS symptom free since she started 7 years ago. I hope this is a healing time for your dd too

Hello. It's been a while since I've posted but thought I'd post a tentative "we may be out of the woods post" for my dd. Background is that I have 2 kids with PANS. Ds7 is flaring at the moment with his most OCD flare to date. Lots of touching and evening up etc. Dd 11 was a classic PANS onset (strep) at 4 with some micro flares prior, with hindsight. After her lightening strike flare at 4 and a second a few months later, the later flares were less intense but we would have more chronic low level 'symptoms' that would remain. We have used ibuprofen, abx and steroids for flares with usually good, if not always complete results. We did proph abx for a 2 years but she still flared with viruses and so stopped those. My dd hit puberty this past summer and (fingers crossed) hasn't had a flare since and nothing even major in the few months preceding. We had a number of infections that would normally have led to some symptom uptick if not major flaring but so far nothing The only thing that we have changed is we've really upped her Vit D. I haven't got the guts to lower it too see what happens. I am quietly hopeful that we may be truly be past it all for her. Maybe pregnancy or other biggies may impact her later (Dr T I think said he often saw upticks with pregnancy). I wouldn't say she has any symptoms left but I do feel PANS has informed her personality, however, she is an outgoing, happy, confident child, doing well academically and socially. I know she would probably look a bit different had PANS never been in her life but those few fragments that we have left feel manageable and ultimately beatable with some time to heal and forget. I've been loathe to post an update as I'm always waiting for the other shoe to drop and it still may but just want to offer up some hope to those in the throes of this nasty disorder. When my dd first got ill, she really just fell off the cliff. We couldn't imagine her going to school, being able to ever work, form/maintain friendships or relationships and now (if it weren't for ds7) I might somehow wonder what all the heartache was about... the really bad first 2-3 years or so are somehow lost in a haze and she's so well now.

So pleased for you

Could he be allergic to one of the other foods in the meal? There are some big names contenders in food allergies but allergies can develop to all sorts of foods. For example some folks with egg allergy can't eat chicken. Or you can be straight up allergic to individual meats, I suppose salad veggies too maybe? What was the dressing made from? Malt vinegars usually contain gluten. What about salicylates? Some veggies are high in these.. eg tomatoes

7/8 days is the classic timeframe for serum sickness-like reactions to happen in response to meds. It is a Type III delayed hyper sensitivity. I would have a good look at that as a possible. If that is what he is dealing with, it should take 3 weeks for symptoms to resolve as that's the half-life of the antibodies produced. The vasculitis and other issues are caused by the deposition of immune complexes in organs ie skin and joints. My dd had vasculitis that did go fairly quickly, about 2-3 days after stopping the abx, (that was replaced by dermagraphism), body swelling that also went when we stopped abx. She had horribly swollen, bright red and hot knees and elbows, followed by severe at times joint pain. When the pain was severe, she couldn't walk. We were told to use benadryl at full dose, double dose zyrtek and full dose ibuprofen. This kept her comfortable most of the time. She was evaluated for rheumatic fever due to the joint involvement swelling etc but came back negative and magically at the 3 week mark the pain subsided and resolved over a couple of days. My daughter can happily take azithromycin but as penicillin was her trigger can no longer take those. We also avoid cepholasporins (sp?) as they can cross react with penicillin allergies. So even if it is serum sickness it shouldn't mean he has to avoid all abx. Good luck...

Just a thought but what meds is your son on? Our dd had a serum sickness reaction to penicillin which started with vasculitis. We also thought hives until we realized that they weren't coming and going as hives should but staying and coalescing/bruising etc. It might be worth googling serum sickness-like reaction. It can happen in response to other abx and I presume other meds too. Our dd's vasculitis went away fairly soon after stopping the abx but she continued to have other serum sickness symptoms for another 3 weeks or so. Mainly joint pain, at times severe.

Dr. Perlmutter has written an excellent book along these lines "The Grain Brain". A really good read with just enough science. Sweden is the first 1st world/developed country government to shun the high grain, low fat diet in favor of advising for a low carb, high fat diet (right fats of course).

Hello. You may also want to look at paleo recipe sites. The paleo diet includes meats but many recipes themselves don't and all strict paleo recipes should be GFCFSF. There are also a number of recipe maker apps on some of the sites where you can input your ingredients and it will spit out a recipe. I've never tried these so can't vouch for them but it may be worth a look.

rowingmom - are you fully paleo? did you go gf first? I would like to go fully paleo here. well maybe primal (with some dairy) but am wondering whether we should go gf first or just try the lot at once. If you went gf first, did you see a big difference from gf to paleo? We've flirted with it over the last few months but haven't gone whole hog. I've been gf free for about 10 days or so. Nothing noticeable yet but.. my mother stopped eating bread last week and is already feeling loads better. WAY less tired, walking better etc... A great book is Grain Brain if folks haven't read it yet by Perlmutter. A really good, fact/study laden book on the benefits of going grain free.

Hello. Thanks for the response. Yeh, sorry if I wasn't clear. I was mainly trying to confirm that this was definitely a separate issue from the PANDAS. I feel it is but PANDAS has such wide reaching arms that I thought I'd just throw it out there in case anyone else had seen it in tandem with other PANDAS symptoms. I also had dysautonomia in the back of my mind because of the dizziness aspect and I've seen a few folks mention that in relation to their PANDAS symptoms. From what I can read, she is young to have labyrinthitis but who knows. It'll probably resolve just fine... Thanks.

Hello. PANDAS dd 10 has recently had a middle ear infection, followed by an outer ear infection and then ear pain which resolved with antihistamines and holding nose/blow to help clear Eustachian tubes and now... dizziness on moving her head and position changes, and some nausea. She is also having the odd instance of eye pain behind th eeye but no headaches. She wears glasses but they are 5 months old at best and feels her sight is ok. It has even been waking her at night. The dr thinks it's labyrinthitis - inflammation of the inner ear and I think that's probably correct, especially with the temporal relationship to ear infections. I was only wondering as I'm seeing it related to anxiety/panic attacks in the literature, the explanation being that feeling that dizzy can be very disorientating etc and anxiety inducing. I dunno.. just wondered if other parents were seeing anything like this in their kids. Thanks

Thanks for the responses.. I fully believe that allergies can be the reason for ill health and it makes sense that I could keep getting ill due to allergies I'm just surprised that 15 or so out of 20 inhalants (can't remember precise amounts) and all foods tested so far - wheat, corn, soy, baker's yeast, dairy and eggs have all come back positive. I assumed I'd feel more ill with this many rather than just perpetually stuffy. I keep reading that many allergists don't rate the intradermal test and how it can produce many false positives. What with the added need to fully buy in for elimination diet and then the long and possibly complex treatment schedule of drops and rotating foods etc... well I really need to feel confident in the process. Thanks..

Hello. Sorry, this isn't PANDAS related but thought there would be some good knowledge out there... I was just wondering what people thought of intradermal allergy testing, for inhalant/environmental and food allergies. Thoughts on accuracy, false positives etc. I'm wondering 'cos I've recently visited an integrative doctor to attempt to find out why I get ill so often and for as long, when others in my family throw illness off much quicker. I've had some level of allergic rhinitis for years, along with increased nasal congestion, ear popping in the last 10 years or so. I'm just surprised at the number of allergies found so far.. many molds, cat, (haven't tested pollens yet) and all foods so far tested - wheat, corn and soy. It's not beyond belief but I'm just surprised I'm not experiencing worse symptoms. Up side is the allergy technician lady says lots of folk with these many allergies experience weight loss once they get treated.. so there's a silver lining in there that I could definitely benefit from

Sorry, I didn't mean to suggest revisiting your PANDAS child's dx. What I meant was, has anyone suggested reconsidering your child with the ADHD dx, just in case that is also a case of PANDAS/PANS. Our ds with PANDAS could have easily been misdiagnosed with ADHD. Sorry, if I was confusing

Hello. Just a thought but did anyone at NIMH suggest you revisit your other child's dx. It has been suggested that sibling incidence rate can be as high as 40% and, as we all know, PANDAS/PANS can present in many varied ways. We have a classic presentation dd but a ds who could have easily have been dxd ADHD. Only in the last 6 months has he started showing more of the OCD and tics during his flares. So he's had maybe 4 years of hyper/impulsive type flares alone.

Just a thought but wondering if this plays into Dr T's cytokine/alternate fever response theory. We had flu go through the house over Christmas (swine probably as both my PANDAS kids did ok and they got swine flu back in 2009). I was awful.. and one of the worst symptoms was skin pain. I ached all over but had extremely sensitive skin pain, rubbed raw kind of feeling on upper arms and back in particular. So much so that a thin shirt would feel painful. This can be a part of sickness behavior, hyperalgesia caused by cytokines. I also had burning feet, especially when I tried to put socks or shoes on, or had a bath. Also getting into bed. Temperature change seemed to be the common denominator for the feet. For me it went when the flu went but maybe for some of these kids who have this aberrant cytokine response, it may be the cause of ongoing issues... or flares when they are exposed to infection and the cytokines ramp up. google hyperlagesia cytokines