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Thanks everyone for the thoughts! We are going to do another round of stool work up and add digestive enzymes as well. Dasu-- we have not done contrasting bloodwork. That is a great thought. I assume if the count changes it would indeed confirm infection. We had noticed previously that during a flare his IgE was always elevated- hence our focus on allergies - food and otherwise. But the clock work type cycle is baffling.

That's a good thought. We have not given enzymes. I know his diet is not as clean as it once was as he is in high school. During his 5 good weeks-- I'm sure he must say "what the heck..." and consume things he shouldn't. He's very good about gluten. He has dairy, sugar and dye slip ups.

Hi qannie, he is severely allergic to dust mites. We have been good about controlling for dust mites (and we addressed mold issues two years ago). We are on the waiting list to see Dr. Greenblatt but in the meantime I am digging again. We did so well for so long and I cant believe we are back to every 6 weeks like clock work.

Feel like being a detective? Quick recap: PANDAS morphed to PANS. Did well on antibiotics. Remission X 18 months, Managed well for years until in seventh grade - we began with monthly flares with monthly sinus infections. Found to have elevated tissue transglutaminase. Removing gluten and dairy was a huge help to us and helped us back into remission. Now with the start of high school, we are flaring every 6 weeks again - clock work. 1-2 days before flare: flushed cheeks (he is fair skinned and always pink) but during a flare his cheeks are bright red (we try to avoid food dye and as said we are gluten and dairy free). Have not been able to find direct link to anything else causing the flush (i.e salicylates...) unusual body odor (one or two days prior to the flare he smells more pungent - moreso than a normal 14 year old boy!) increased kinetic energy increased water consumption and increased urination Flare: (7 days - day 4-6 are the worst!) Insomnia - horrific headache OCD primarily obsessive thinking severe constipation and thus obsessive thoughts about weight and BM's food refusal dramatic energy decline horrible brain fog mental and speech processing dramatically slows 1-2 days Post Flare: Spacey and a little goofy for a few days as he searches to get his brain back. Motrin helps some. Azith used to help alot but now seems to make his mental fog worse if we give it during the flare. Western Blot in 2011 showed one band IgM 23. BUT subsequent years of testing has been negative for lyme and all coinfections. Titers for mycoplasma and strep are low as well. He does have chronically swollen nasal turbinates -- but has not had an infection in quite a while (as opposed to 7th grade when it was every month). We are dealing. We are managing. He is growing and maturing. But why the cyclical nature?

Hi Everyone, Have been gone from this forum because we had been doing quite well. Well, we are back. Long story short. History of PANS since age 7. Treated with antibiotics and did well. Seventh grade was rough right around puberty. Started flares every month with sinus infections. We discovered he had elevated tissue transglutaminase and thus we eliminated gluten and dairy with great success! Eighth grade was okay with only about 3 more milder flares. This summer and again with the start of high school (a whole new germ pool), we've noticed a change in the "flare," however. It used to be classic abrupt, increased urination, dramatic OCD, terrible brain fog,...the usual. But now, the last two flares (including this one which is severe) is more bipolar in presentation because the last two have been preceded by a few days of higher energy, ADHD type days prior to the dramatic flare. He had a cold last week and now another one this week. The current flare is food refusal, off the chart anxiety, OCD (checking homework over and over and over again), trouble sleeping and worrying about trouble sleeping. His face changes. He has trouble putting sentences and thoughts together. His ability to process information is slowed to a snails pace. What would normally take 5 minutes is taking an hour. It's extremely scary as you all know. My child completely changes. My impression is that most mood disorders are probably autoimmune and inflammatory in nature and so I'm not too concerned with what to call "this." But I was wondering if any of you with older kids saw a change in the patterns, with or without a degree of "hypomania" (higher ADHD type energy) prior to a big time flare? (am quite sure with the start of high school his diet lapsed and the exposure to new viruses are responsible for this bad flare that we are in.)

Thanks for the replies. I suppose I wonder most why the PANS experts don't mandate imaging studies as an initial screening tool when such dramatic cognitive changes occur. Seems many first line docs either refer to psych OR if they do believe in PANS they might prescribe a course of antibiotics. But what if there were some other ominous cause that was missed. And if indeed there are studies that confirm PANS relatable changes in the brain, you would think researchers would want to collect such data regardless. Hmm perhaps it's cost. Rudimentary scans probably only detect lesions yet inflammation will cause structural shifts that could perhaps be seen. I guess I am on my soapbox regarding stigma. Cancer invokes sympathy. It's physical. There is a tumor. PANS is still in the realm of "mental illness." What isn't seen isn't understood and the stigma is attached because of it. Nancy, your thoughts regarding a type of Vitamin D, SAD component are good ones. Though throughout winter, in between the colds and coughs, DS can be closer to normal. The roller coaster is truly the best analogy. But the dips do seem bigger in the winter.

I am curious if anyone in the PANS community has recommended imaging studies and if so do they ever show anything? We hate winter. DS13 goes from an "A" in Algebra 2 to forgetting his multiplication tables and how to subtract when he is flaring. It's so dramatic. The brain fog is truly remarkable. Sometimes I feel like half of this is an act. Maybe he just doesn't want to review math (he's reviewing for an entrance exam in a few weeks). But then I remember. He's sick. His OCD and insomnia have returned and thus basic math concepts are out the window - (replaced with anxiety and tears). How can such a cognitive shift not show up on some sort of scan? On the days that I feel vulnerable - I still so much want some tangible hard evidence to define this ridiculous roller coaster.

Thank you for posting this topic and thank you to all the responders. Have needed this today.

Thank you everyone. I have resisted the shots for some of the reasons you mention. Fear of stressing the immune system and fear of rocking the boat. But I think its time to look again. It is every year and he gets so run down. Sinus infections are the culprit - and then PANS flares on top of things just send us into a tail spin from Nov. to April. Maybe, like with everything else, if you start low and go slow it will actually help long term. Interesting 911rn, ENT mentioned surgery for us last year but I think he was referring to turbinate reduction. I need to dig deeper. I know we'd be so much better off with PANS if I could get his sinus/allergy under control.

I know this has been discussed before but I'd like more current opinion? We have been gluten free (had antibodies to gluten in large numbers) and dairy free (red ears and cheeks) since March, with very significant improvement in overall health and thus many less flares (and no major flares). However, November/December (and usually March/April) are always our worst months due to viruses and allergies (dust mites very positive but probably others that didn't show up). Currently DS is sick and this is the first major flare we've had since March. Living with PTSD myself I have been waiting for this ugly head to return. Well here it is. His nasal turbinates are huge and pale and suspect for allergy component. This happened same time last year. His IgE was significantly elevated. All his PANS symptoms are back. He is on antibiotics for probable sinus infection. He responds negatively to all antihistamines! Seemingly they hype him up. We've done all the household anti- dus mite measures. How have your kids responded to allergy shots?

What an amazing story. I'm so hopeful that "mainstream medicine" will start to ask the right questions. Instead of diagnosing a child as bipolar - again and again. Ask "why is he bipolar?" You don't just wake up one day at age 4 with psychosis. Something had to happen. Some sort of insult to the system.

I have it, the mother of a PANS son. Hmmm! Growing up I'd have to stick my fingers in my ears during a test if anyone was chewing gum near me. I still have problems with gum chewing, lip smacking or someone flossing their teeth. The sounds induce an internal rage of sorts. Interestingly though, my reaction can vary depending on a) the offending individual - the closer I am to the person the more irritated I am and the point in my hormonal cycle. I have learned over the years to manage and cope so that it doesn't really affect me as much. But now sitting at the table for a meal with kids in braces-- is a real challenge!!

Thanks everyone. Had not had a cold all summer long. After this slide began, a few days later --- now has a cold. So we are likely going to be in this pattern fall, winter, spring. I've begged DS to be vigilant this week with his diet. The antibiotics have helped lessen the magnitude of this flare. But also, reverting back to the strictest of diets. Gluten free, casien free, soy free, low sugar right now... Hopefully, we can get a handle on things again. Qannie, I will look into your suggestions! Thanks!

Thanks quannie. I think he's been eating gluten at school. He has several friends gluten free that "chance it," and he was thinking he could take in small amounts here and there. Just admitted this to me. So yes, triple quadruple whammy. He is spiraling downhill quickly...mental fog is starting now too. Anxiety ramping up with OCD. We are back on antibiotics as prophylaxis now and will treat with anti-inflammation measures. Hoping this does not turn into a crisis point again. I am very sad that we are facing this yet again. Had really hoped we were on a path to recovery.

After several months gluten and dairy free and after several months of being okay despite a few hiccups we are probably in a flare again. DS13 started school a month ago (wacky calendar schedule), so exposure to illness and gluten/dairy have been a problem. He also got braces on about a month ago. This week he started to unravel with all the similar signs and symptoms. Hyperactivity, urinary frequency, irritability. Then progressing to anxiety and OCD this evening with probable issues sleeping (just now waiting for him to come out of his room...). He doesn't appear to have any illness brewing such as viruses or strep et cetera but one never knows with him. But he did lose two molars yesterday. He'd been off of all antibiotics for a month. We are going to resume. If this is from the molars, would symptoms work themselves out once the teeth are gone? How long would residual inflammation last? Or should I suspect something more like illness or increased gluten exposure?

Thank you Qannie! Am so pleased you were able to get to see this doctor. Also pleased that diet changes are making a big difference! I will PM you as I do have a few other questions. Appreciate your help!

Thanks so much. That is what I have been thinking. I was going to pursue checking his status regarding MTHFR but things spiraled since his ttgIgA came back elevated. I guess its time to slowly start looking at this area as well. An exhausting process. You figure one thing out but then that leads to more questions...

This was a standard lab corps test - both times. No asterisk. Interesting note though. A deficiency would make more sense ;-)

Without giving you the "long song and dance" -- any immediate reasons these two values are consistently elevated (two lab reports 6 months apart) -- This is without supplementation.

Qannie, please post a summary "in your spare time." Wanting to piggy back!

I tried testing at home and watching for reactions but that was fairly early on -- when we were still adjusting to gluten/dairy free. I'll try again because you could be right! But I found at least the behavior issue-- he ate ice cream at a friends house. Has to be related. Such dramatic ups and downs!

Following this thread... did you note any reaction after the 2 days of slipping? My DS has bright red cheeks again and worsening behavior alongside and I can't figure it out! I think gluten? dairy? eeeek infection? Such fine tuning is exhausting!

Thanks for the info. To be fair some of us use the Pepcid to act on the Histamine receptors. When kids can't tolerate an H1 med, an H2 used sparingly (not a PPI), can be a real lifesaver. I agree though. It would be a bad idea to use anything long term or without paying special attention to the bacterial balance.

This is a 2011 review in which Rosenberg and others do acknowledge a possible autoimmune component toward altered glutamate balance and mentions PANDAS. It's not his "new" study but provides a comprehensive review of his stance. http://pubmedcentralcanada.ca/pmcc/articles/PMC3437220/

Thanks Rowing Mom! I have been buying organic meat. And I buy mostly organic fruit and vegetables. Have been wary of just purchasing "gluten free" products as they don't look too much better in terms of overall nutritional value. Noticing more and more GMO free labels in the stores. I do think cleaning up the gut in multiple ways is such an important component!