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Please let us know when you find out. DS at age 5 tested negative for absolutely everything. Now at age 12, he is testing very highly allergic to dust mites and negative for everything else. But I still feel like he is an allergy kid. I fully expect him to test positive for more things as he grows. But most (all the ones we've tried) antihistamines seem to cause an increase in hyperactivity and impulsivity! We've never tested his histamine level but certainly see some characteristics of high histamine.

Well said Nancy!

My guess? Both theories are correct. I think there must be a genetic component that leaves a person susceptible. So when exposed to certain conditions, the susceptible individual becomes affected. We have one son with PANDAS and one without. Are they genetically different or were they exposed to different conditions? Probably both.

My aunt was schizophrenic. Mild tics as a child and sometimes "stubborn" by everyone's memory but overall a successful woman until age 24. We know that mental illness has biologic roots. I suspect many "adult disorders" stem from a similar PANDAS type pathway. As Dr. T said to me once, "people don't just go crazy for no reason."

Interesting question. With DS, his presentation is/was more severe than anything I can remember in my family history. Nor do I hear dramatic stories regarding DH's history. But there are hints and touches of every symptom on both sides. I had sensory issues and an eating disorder. I also had strep repeatedly until my tonsils were removed at age 18. My brother had eye tics and both my siblings "tested the patience" of my parents. DH is a rigid thinker and one could argue OCPD (personality disorder - not OCD). His sister has OCD tendencies but they do not interfere with daily life. Both are intense people, and have tripped over into anxiety from time to time. But they are were rule followers and highly successful students. No question DS's baseline personality (intense yet also sensitive) is inherited! However, the wild change in him during a flare is not like anything from our pasts. On the other hand, we tend to only remember the good moments in great detail. The bad ones, get a bit of whitewash effect over time. I try and tell myself that its rather important to adopt a semi "laissez fare" attitude. I know our entire family is adversely affected when molehills become mountains. That being said, the crisis flares are dramatic and worth the attention!

Thanks everyone! You have no idea how stressed I've been thinking about braces! Good to hear your experiences!

With all these threads about loose teeth being a trigger, it got me wondering about braces. Our DS almost 13 used to flare with new teeth - though not always. He now needs braces. Surely this will be a stress and cause some sort of inflammatory response... Has anyone else had to deal with this yet? (As some of you know, we were flare free age 11-12 1/2 but now dealing with more frequent and more dramatic flares...)

I have investigated the pinned recommendations but reach dead ends. Looking for either PANDAS/PANS specialist or LLMD near Raleigh/Durham NC.

So interesting that many doctors do not think beyond the term "mental illness." Are they too narrow minded to ask themselves "...what causes mental illness?" I personally suspect ALL mental illness is in one way or another caused by a variety of factors certainly not limited to infection, inflammatory response or autoimmune dysfunction. Why in the world would doctors be against searching and looking for all possible triggers and thus solutions? PANDAS/PANS is the tip of a very large iceberg. Why are they so afraid to step on board? With every generation there are medical advances - I simply fail to understand when a doctor shakes his head and says "no. couldn't be." They, in my opinion, are not masters of the ART of medicine. They are simply robots with a defect perhaps - mental rigidity. It's their problem-- not ours. Move on, keep searching - the best advice I've recently received is to cover all the bases - don't let docs force to you look through just one narrow lens. Nothing in life is simple. Look wide.

@mommybee- Thank you for your question. It's on the radar but... lyme in 2011 via Western blot had one IgM band number 23 which is lyme specific and one band IgG band 41. In 2013 all lyme (not via Western Blot) and coinfections were "negative." @momwithocdson and @deedee - thank you very much for your responses. I feel newly inspired to continue the PANS/PANDAS path and will be working on looking closer at lyme (myco P negative), resolving ongoing sinus and allergy issues, investigating MTHFR et cetera-- but will certainly also veer additionally toward more intensive CBT and traditional support. Lamictal is one I had not heard of and will certainly keep that in mind as well. Have read up-- it could be certainly worth a try. Right now, we are spirally down... but we found out today his sinus infection is back! Hmmm...

Any new additions to the doc list - perhaps Duke Med/Raleigh area? Have researched the doc list and still looking - no good leads. Have used Dr. T by phone for several years - and have a good local psychiatrist, an ENT for ongoing sinus infections, an endocrinologist for subclinical hypothyroidism--- but I am looking for more PANS support to leave no stone unturned. We have never done IVIG. Our psych is willing to help with MTHFR status so that is cooking but... With our ongoing physical symptoms (in addition to personality/OCD changes) including headache, joint pain, mild IgG subclass deficiencies - I'd like to have either a neuro or immuno on board too? Have been looking for LLMD as well but search has stalled. Dr. T tested via Western Blot: postive 23 band IgM (lyme specific) in 2011 with IgG of band 41. Did not meet CDC standards. In 2013 lyme "negative" - (did not do western blot) - and he tested for all co-infections showing "negative." Dr. T does not think lyme and neither do I -- rather it seems more chronic sinus insult, perhaps histamine related as well. He's also had flares with viral insults - parvo, coxsackie... Does anyone know of any good medical professionals in my area. Please feel free to PM please if so.

THANK YOU!!!!!!!

Thank you airial95. I appreciate your advice. I think I am just going to keep pressing, keep searching. Yes, I will journal again for sure. I think PANS is related but I want to make sure our path is helping and not hurting. Our psychiatrist isn't pushing bipolar but it's a thought. She sees it more as inflammation based which is wonderful but that could be because of our more classic history. We just want to make sure we are not missing things. It's so confusing. I do not feel comfortable with psych meds but i cannot stand the misery DS is experiencing. We'll keep pressing… and we'll need a new therapist too for more psychological support… I very much appreciate this forum!!

Sorry- misspelled the title!!! I have spent the last several days reading the "internet" regarding MTHFR and nutritional balancing. It's taking me a bit of time to digest. I know there are some very knowledgable people on this board - LLM in particular i know has extensive knowledge in this area. Would love advice as to where to start? 23&me as first step? Here are a few "abnormalities" : Complains of joint pain, fatigue, facial flushing.. and episodic anxiety OCD, depression et cetera et cetera-- PANDAS/PANS since age 7 (maybe 5). Labs below drawn after "sporadic" occasional multivit supplement that did have alot of B12 500 mcg and 400 mcg folic acid: (but we gave him this only 2 -3 times a week for just a few weeks prior to labs). B12 HIGH (1467) (reference range 211-946) FOLATE Upper levels >19.9 (reference >3 is normal) Ferritin alwasy runs at very bottom or reference range. Chronically swollen nasal turbinates/ sinus infections. TSH was consistently high despite normal T3-T4. Placed on levothryoxine all values have remained stable on medication X 2 years. Anti- adrenal antibody confirmed presence. Normal is less than 1:10. DS level was 1:10. No one seems to think this is a problem including our endocrinologist. Ig E low 2011 bu high (just outside reference range) with last test November 2013. Mild G2 and G3 subclass deficiencies. My question: our psych doc recommends inositol. I don't want to add anything else until I understand more about his MTHFR status. Any clues above? Do we order and wait for 23&me kit despite it's more regulated limitations?

Thanks so much for all the replies! I guess I am not really able to adequately detail why this feels so different. Ages 7-10 fell into a pattern and through journaling and response to treatment, we were able to feel good about our plan. Flares settled into about twice a year (after strep or viral infection) and symptoms were the same: OCD was need for symmetry, math regression, mental fog, emotional issues with rage, urinary control problems. We did have times where he flared in a more mild fashion with motoric hyperactivity. Impulsivity has always been an issue regardless of infection. Flares always looked the same, dramatic onset, and responded to motrin, antibiotics and sometimes pepcid for a suspected spring allergy component. It wasn't easy -- it was gut wrenching- and I had doubts then - but it was more clear I suppose. Age 11-- 12 we were dramatic flare free!!! At age 12.5 a flare in September-- totally different though the onset was still dramatic, insomnia (terror in fact- panic over not being able to sleep though he desperately wants to do so), his thinking pattern became more stream of consciousness worrying. His "obsessions" were SO MANY-- it wasn't just one thing. It was this incredible "verbal vomiting" (or maybe verbal diarrhea is a better term). This time around he also had headache complains of no memory insanely pessimistic- like a little philosopher urinary accidents food refusal because he thinks he's fat won't watch tv or video games because "its' bad for eyes and mind" eye pain facial flushing joint pain…. The insomnia and anxiety receded and returned -- each time worsening-- from September to November-- until we put him on Suprax. So my question was why did it recede a bit prior to Suprax? It was more like cycling. Which is why we tested for coinfections (negative per Dr. T). Then the sinus infection and response to Suprax - I was relieved. But now-- everything is back-- just 5 weeks later - again. So I guess I just wonder if this is more bipolar looking now and question whether or not I've been looking at this new presentation through old glasses. ITt's more frequent and different feeling. I naively thought that we would have a little more time before the next flare and its sent me into a tailspin. It kicks me the gut every time. Yes, I am journaling again and I agree that its an invaluable tool. Maryraw - I had thought his verbalizing was a maybe reassuring type compulsion???? He just "needs" to verbalize every single thought…? We have started some basic restrictions on what he is allowed to discuss. If its questions regarding our finances or his future (which has been asked 100000 times), he is required to answer on his own et cetera. We are trying to re-frame and have him make lists but he is so scattered and "can't think" -- it's difficult to do. I have a call into our psychiatrist to recommend a new therapist to work with.

Thank you Nancy! I need to push him this way. He's got to be an active participant or I fear a relentless brick wall regardless of trigger. I like the term toxic soup. It so perfectly describes our house right now.

Peglem, you are correct. 23&me is next on my list too along with repeat allergy testing. A very kind member PM'd me and reminded me to check latest labs for B12 and folate. In DS case, both are elevated quite substantially - quite far out of the reference range for B12. Ferritin runs low at the very bottom limit of the range. I found the B12 level odd at the time considering we'd only be supplementing occasionally with a multivit. Now I read that these are elevated perhaps because DS is unable to convert. Why is it taking so long for mainstream medicine to check for these things?

Thanks to all for these responses. You give me more than you know. I agree that the label is less important but I find it incredibly difficult to trust my gut during this time -again. When DS was younger, this was more clear cut - he had all the marks listed in Swedo's criteria. Though we never had strep titers, we could always link a flare with an infection and because he responded to motrin/antibiotics I felt sure we knew what we were dealing with. I remember questioning the diagnosis but could not deny that he responded to these things. We also over the years have thought we were dealing with some sort of histamine issue and DS responded to Pepcid. H1 meds seemed to hype him up which is why we have not used Benadryl for sleep. I wonder though if with age he would respond differently. We have not tried in several years and in fact never had issues with sleep until September. He seems like an allergy kid- always has but also tested negative and his IgE was low if I remember correctly. I do plan to get him re-tested. This time around just feels very different and I still cannot put my finger on things. It's so much more frequent. I toy with bipolar because these are such wide swings and so very unusual. He can still have periods of motoric hyperactivity and impulsivity as part of his "normal" personality. With the flare, he becomes anxious, depressed, perfectionistic, self critical and in a weird way he becomes a little philosopher - all within the time of one day. He is a dramatically "different kid." His thoughts ooze out seemingly non stop at first with the anxiety edge--- and the-- with the more depressed edge. He is concerned about nicks and scratches in the wood, or on my phone. He is concerned he's fat and will refuse food. He is sure he won't get into college...won't be able to understand money... the "world will not have any jobs by then anyway..." When he was younger-- it was classic OCD-- evening out-- car doors- light switches et cetera. This time around- it's just different. Nancy, I agree that this is a hybrid. I remember reading your posts a few years ago. Thank you so much for sharing your journey. Did you find puberty to be particularly difficult? We have pursued CBT but DS does not seem to be able to grasp the concepts when in a flare. He also does not want to participate in any type of therapy when he's "fine" because he says "I'm not worried about a thing." Oh we are myco negative but will be visiting to check sinus issues again. His CT was "clear" after 3 weeks of Suprax but certainly things can resurface. I also believe that he responds to antibiotics primarily because of the anti inflammatory properties.

Our flares have changed from when he was younger. Please share your thoughts on this presentation: A flare begins with DS12 noticing "things more closely." He starts to wonder about people in the world, where products come from. His thoughts begin to race and it's like verbal vomiting. He is seeking reassurance. He is worried about his future,our money, our water bill and our credit, how he will get money, how he will find a job, the surplus population, the workers in China, technology changing the world. His thoughts race and he has zero filter - he "needs" to verbalize them to us. He does not want to be left alone or watch television or play video games as he's worried his eyes will be damaged. His eyelids twitch and his eyes hurt. His joints hurt. He feels awful. His memory is gone. His cheeks flush and he has severe insomnia -- which is another worry "how will I ever sleep and if I don't sleep...." He has urinary incontinence issues and now food refusal too. Dr. T ran more tests as this pattern started in September of 2013. Extensive tests all relatively normal. We started him on Prozac and thought it made him worse-- suicidal thoughts and rage. In December he was found to have an "impresssive sinus infection" via ENT and was treated with Suprax for three weeks with good results and remission. From September to November he'd been waxing and waning though it still was like a 0-60 wax and wane. For all of December he was symptom free with the exception of some mild anxiety. January-- symptoms above are back. I am questioning our path. Perhaps this is not PANS? It all seems different and chronic now despite the O-60. It's just so frequent. This verbal vomiting is so strange. I am confused and thoughts nag me- maybe this isn't PANS - maybe I am doing him more harm than good. Does he need to diagnosed as bipolar/mixed state and placed on a slew of psychiatric medications?

Interesting. I would not have thought that but it seems certainly possible. He major symptoms during flare (when he was younger) had been "just right OCD" - very sensitive with touch in particular needing everything to be even. More recently, this fall, the OCD was worries with order, dust, and dramatic reassurance/checking. However this "pose," I've noticed regardless of health, I think??? Seems to be all the time but I guess I need to add it to my chart!! I do wonder if there are more secretive OCD issues that I don't know about.

I know this may sound strange but it nags in my mind so I thought I'd ask here. DS12 PANDAS, retrospect onset at age 5 but misdiagnosed… Prior to PANDAS, DS had fully developed fine motor skills including the ability to draw and manipulate intricate projects. But, by age 9 his peculiar handwriting grip and loss of fine motor skills had become very noticeable. This is no longer flare dependent. It's ongoing though he has learned to manage and adapt. His pencil grip is very strange despite repeated attempts by OT to correct. He still has trouble holding a fork properly. I notice his hands when at rest. They rest palm side up, while at his sides, crossed, on a table. on his lap. Always palm up and fingers are only curled ever so slightly, I don't know what my question really is. LOL. I guess, does anyone notice this?

This is a perplexing issue for us as well. At his worst, DS 12 cannot attend school because the anxiety/OCD is simply too great, he can't control his symptoms. But when I can get him to school in the middle of a flare he is virtually symptom free at school. His teachers don't see it and thus many don't believe that he is struggling mightily. I think this is perhaps one of the most frustrating facets. One with simple black and white thinking would wonder how someone could stifle their symptoms if the symptoms were caused by inflammation? It's either inflamed or not inflamed. Right? But I suppose, as all of you know there is no black and white with PANDAS/PANS-- it's all a lovely shade of gray.

Thank you for posting! from someone in the deep thick of things. DS12 is currently suffering from his worst ever flare. Your posts bring so much hope!

Thanks everyone. Labs are still pending as is appt with new Dr. In the meantime, this episode lasted a bit longer. He was started on very, very low dose of fluoxetine for the intense anxiety and OCD. He was then diagnosed with a sinus infection and placed on Suprax for three weeks. All symptoms began to resolve including headache, photophobia, insomnia, OCD after 3 days of fluoxetine and 2 days of Suprax. He was quite well with virtually no anxiety after 5 days of fluoxetine and 4 days of Suprax. That was Monday, yesterday. After lunch he complained of stomach pain, then he proceeded to vomit for the next 8 hours. Low grade fever, cheeks flushed, uncomfortable... He's already started to ask if the anxiety/OCD will come back... self fulfilling prophecy? We are bracing ourselves. Any ideas?

Thank you for all the support and advice. I know you know how desperate a parent can be. I am losing it myself as I question everything about PANS/PANDAS now. My questions -- did we miss the boat early on-- should we have hit him harder from an OCD angle-- intensive CBT and/or medication? Should we have hit him harder and pursued IVIG if indeed PANS… Should I have searched more for lyme/cofinfections? Should I have pursued methylation et cetera. My reality is that we were managing well without only about 2 flares a year. The spring ones were always the biggest. But he of course had some general blips along the way so for lack of a better term we just kept on swimming and lived the ebbs and flows. He was in school, functioning well for the most part so we went on. Now I am kicking myself for not taking that time to dig deeper. Yes, in September we had his first major flare in a long time but this time it changed. This time his sleep became a major problem, primary in fact. He worries about not sleeping from the time he wakes up in the morning. Then new obsessions after that… missing school….not eating…. Really the worst we've ever seen. Got him back to functioning and 4 weeks later another flare, same obsessions, same problems though we were able to keep him in school barely. Got him back to functioning and now 4 weeks later here we are again. This one is just as bad as September and he has officially declared himself "insane." Tonight our psych is trying Mirtazapine (sp?) for sleep. We'll see.. I did call Dr. T today and he ordered a battery of tests which have indeed been expanded since 2011 to include all items mentioned above. It's a start. I will certainly attack from autoimmune perspective and hit him harder with all measures involved. And yes Lyme - I did read about the life cycle. I will contact ILADS. I just wish I could get him over this hump so I could get my own thoughts in order. Maybe if it is Lyme this will only be a week long journey too. The psych meds don't make it easier-- they seem to cause their own problems which still cause him to feel "insane." What a horrible vicious cycle we are all in. My thanks to each of you. Being able to talk to others who do not think I AM CRAZY is so incredibly powerful. Right now our family, our friends and our doctors think we are the ones who are nuts.