MissionMama

Good gravy! so many options... thank you so much for the input. I am just looking for a general probiotic, no specific issues to address or avoid with the gut at this point in time. I think I will try PCC or Whole Foods and check out the Ultimate Flora and go from there. Any input that would suggest a slow start on these? As in every other day at first? Have read that sometimes the introduction/increase in the bacteria may cause stomach upset until the body adjusts...practically thinking this may be avoided with an ease in approach? Thanks again.

To my trusty warriors.... Looking for an oral probiotic. DS 12. PANS kiddo riding the wave of stability (for the moment). Dx 10/13....abx to multiple rounds of steroids...finally HD IVIG. Bridging the gap with low dose SSRI (prozac). DS is a very VERY picky and prohibitive eater with a pretty restrictive diet so it feels quite impossible to venture into the realm of wholeness. The goal will ultimately diet focused, and the more I read the more I am convinced of the gut/brain connection so I would like to start with a probiotic supplement. Any recommendations to help me get started?? Thank you.

Hi there, Before I say anything else...if you are just starting this journey, ugh, I feel for you. BUT, there is hope. We are in the Puget Sound area. My DS was hit hard, out of the blue in 10/13.... We had what seemed a very long and painful road, but not compared to others on this forum (this community has been a life saver!). We did abx, steroid burst(s!), and finally two rounds of IVIG, though I think only one HD over 2 days was actually necessary. Now, 15 months later our son is a functioning 6th grader that goes to school, enjoys his friends and is learning to cope with only some residual OCD, depression and anxiety being mostly controlled by a very low dose of SSRI (I know this hasn't worked for most). We feel beyond blessed after a year of and over 5 months of him barely leaving the house, let alone go to school!! The week before this sh*t storm hit he was one of the stars of his school play. Ugh. So dark, the memories. What is your story so I can give you more info. In fact, PM me if you'd like to know more about our story. Also, insurance initially denied any coverage...his official dx was auto immune encephalitis - post viral. No sign of strep so he is def PANS but our immuno knew better than to code it that way. Cunningham Panel helped with eventual coverage, as well as my 4 page appeal letter. Eventually insurance covered the $75k bill (IVIG was done in hospital setting).

We are strictly PANS...and I agree that the PANDAS and the strep association was a major roadblock for us. This Saturday, 10/25, marks the one year "anniversary" since the storm hit our family. Many, MANY dark months that are in our rear view mirror now (one can only hope). Though I can't seem to shake the dark cloud of "what if" and putting my DS under the microscope wondering if the next flare is starting, or just around the corner. For the moment I try to put the fear out of my mind and relish (TRULY relish) the blessing that is my healthy 12yo son at school today (I hear you hopeinhim, our DS couldn't attend MONTHS of this past school year....). We have bumps and hiccups, but know that if it really hits again we know what worked for us. I hope and pray for the same to each and every single one of you as well. Warriors. Kristi

This article was mentioned at the West Coast PANS conference this past Spring... Haven't read it yet, but figured many of you would be interested as well. http://online.liebertpub.com/doi/pdf/10.1089/cap.2014.0084 Hugs to each and every one of us.... Warriors.

Wow... like magic! Here is the article... http://online.liebertpub.com/doi/pdf/10.1089/cap.2014.0084

The traction this disease is getting is so promising.... It was mentioned last Spring at the PANS conference in SanFrancisco (which I highly encourage any of you to attend in the future...wherever it will be held), but I am really looking forward to the article that is mentioned in this article as well: Journal of Child and Adolescent Psychopharmacology is publishing an October 2014... It should be coming out any minute....right? Or is it out?

Disclaimer: I missed the first 20 minutes of the show. That said, I was disappointed that there didn't seem to be any indicator or discussion of any of root cause. Onset or otherwise. The CBT and some ERP training that they showed was quite painful to watch actually. Yes, it painted OCD in a light that I am sure the majority of people don't ever see, but the kids seemed to me to be absolutely struggling. As in, I wondered if they really were in need of medical treatment in order to even be healthy enough or "ready" to participate in therapy at that level (especially the young woman). Just my opinion...glad to see "it" out there in the more open, but I felt frustrated many times and wanted to blurt out "but why is this happening" or to ask "what other testing treatment have they had???" The follow up success visits they had, while uplifting, still seemed a lot of pain in there... Gee, I sound like a Debbie Downer, don't I?? Maybe it has something to do with the 4 page appeal letter that I finally just got finished to send to insurance to cover the $70k bill in IVIG that I stare at every month? Yeah, that must be what makes me feel kinda grumpy and pessimistic...right? Carry on.... ; )

I hear you. I am for sure Debbie Downer as of late. Our world crashed 10/25/13 and am desperate for the health and functionality we once had....knowing there are families with it much worse, I feel weak for feeling so hopeless. How's that for offering encouragement?? Ha. Ha. Hang in there....!! Kristi

Hello my trusty experts, I am an admitted lurker, very occasional poster, but always the appreciative inhaler of all of the morsels of knowledge out there. I did attend the NW PANS/PANDAS symposium and my notes (and memory!) is sketchy in a few areas. Hopefully someone can help me fill in some dots here. I suppose I have 2 questions - both relate to bridging the gap between teetering on the edge of backsliding...and continuing to heal. Brief history: DS 11, acute onset OCD 10/25/13 (we thought he had been poisoned, seriously out of his mind). Followed by weeks of depression, anxiety, mood swings - you know, the typical nightmare stuff. Pediatrician, immunologist, consult with Dr. K, dx of PANS (no strep trigger detected). 28 day course of cefdinir, slow improvement, but within 72 hours backslide, turn the pages back. First 5 day steroid burst...profound, he returned to school, returned to a functional level...honeymoon over within 2 weeks, results just didn't hold. 2 more steroid bursts, no hold. Immuno recommended a 6 month trial of IVIG to see if it would turn things around. (dx autoimmune encephalitis for insurance...no dice, considered experimental treatment. 3rd level of appeal currently) HD IVIG 2/14. Huge improvement within 2 weeks. HD IVIG 3/14. Less dramatic results, but had less to improve. We decided to coast and not schedule additional IVIG's due to risk/return at this point as DS has returned to school and for the most part, he is in a good space......but the sensory driven OCD is still pretty cruel, and at times it seems to be getting worse, as I know OCD does in general...the big creeping aggressive monster.... 1) We have a scrip for 4mg of Prozac, though I haven't started him on it - Will this bridge the gap and help OCD, then when he starts feeling up to ERP that would be the next step (right now he would not be a willing participant) 2) ABX post IVIG. This is something we did not do - didn't think it was necessary because his trigger was unknown, as opposed to strep. But would they help take the edge off some of the behaviors? My notes are incomplete here about when abx should be used, though I do know they do more than just ward off infection....ie. inflammation Ugh, I am so afraid we are sliding....sliding....sliding... Please chime in with SSRI experience!! Kristi

Just sealed the deal. Reservations made. Will someone be coordinate dinner Friday for those who will be there? I have seen that mentioned, but would love details so I can be included! Kristi

Thanks to each of you.... it is never-ending, such a roller coaster....as is proven yet again as I got another call with the news that IVIG won't be this week, they are still doing some "research" with the dosing - as it is higher than what they typically use in kiddos with immune issues - you know, the "normal" kind of issues that are "real". HA. Actually, I totally get it, I am just joking about the "real" part as I know many of you have fought that battle a lot - and trust me, people like me that have had such a condensed journey to get to this point, thank you immensely. Our regular immuno is out this week and when our ped called their office he talked with the on call partner in the group who is not familiar with PANS/PANDAS at all. He initially looked at the labs (cunningham) and my son's chart notes it was a no brainer for him to order the IVIG, until he realized that the dosing is much higher than is typical for his patients. He wanted to consult with neuro, wait for our main doc to get back next week to make sure everyone was on the same page.... could this be the start of the run around? I am choosing to hope not.... Wish us luck. Kristi PS. Teri - I totally get it. I realize how long many, if not most, have had such a longer road than my measly 2 months of purgatory...and I feel for each and every one of you/us that struggles daily. I pray for all of us.

DS 11, first (debilitating) exacerbation hit us like a freight train on 10/25... pediatrician, immunologist, psychiatrist, phone consult with Dr. Kevocavic.... Amazing results from 5 day steroid burst (now losing ground...) "highly likely" results from Cunningham Panel just received. Immuno ordered another 5 day steroid burst to stop the attack on the brain for now, we await call from scheduling but will have IVIG infusion either Thursday (Happy New Year!) or next Tuesday 1/7. Shouldn't I be elated? Why do I feel stressed out....filled with (false) hope.... Isn't this what we have been waiting for? Any information, encouragement, support is very much appreciated. Kristi

Good luck qannie! I hope all goes well....you are included in my prayers for sure. Kristi (on a) MissionMama

Hi Alex, Thank you so much for the thoughtful and thorough response. I was starting to wonder if there was "anyone out there"!! There were many great morsels of information in your response, and that gives me hope. Unlike many that are here on the forums, this is a new beast to us. DS, just turned 11, first exacerbation hit us like a ton of bricks on 10/25...in hindsight, however, I am sure we had experienced micro episodes in years prior. The very acute onset of debilitating OCD was new to us, however. My first thought was that he had actually gotten exposed to, or somehow ingested, something toxic! It was that scary. He missed over a month of school...just had returned for a few half days prior to the holiday break!! We don't have elevated strep titers (streptozyme, Anti-DNase, Anti-Streptolysin O) but did have messed up CBC values that were of some "concern" or at least proved that DS was fighting hard on something.... abnormal reactive lymphocytes, and low ANC levels...oh, and more that I can't recall.... the immuno at Seattle Children's Hospital had us get the Cunningham Panel....and we are waiting to get his input on what to do from here. I mentioned that we had amazing results from the 5 day steroid burst...it was more than we expected, we had forgotten that our son was "in there"...so it was encouraging. We can see that the results are already fading, and we are just wondering what/how the doc will treat him next. I don't think he is really a disbeliever on PANS/PANDAS, but he is somewhat guarded to even use the term. It was tricky to share with our feedback from the phone consult we had with Dr. K. but with the help of our very supportive pediatrician I think it was well received. Again, we should hear what will come next first part next week....fingers crossed for us. The reason I inquired about anyone getting an unlikely on the Cunningham Panel was just out of curiosity, but your post gave me so much more than I had hoped for, so thank you. I especially like to hear how other kids are doing....like I said, we are new to this whole journey, but at times it has seemed so dark and I allow myself to think of how traumatic life could end up being, permanently speaking, if we don't get help for our son. The week before this all happened, DS was the star in his school play, very social, happy, and really the best academic year of his life so far. I am so happy to hear that your son now in 8th grade is thriving...even if yet pieces of the puzzle still to be put in place, it sounds so wonderful. You must be so proud. One thing that continually stands out to me is that every parent that is fighting for their child(ren) here on this forum is so tenacious, thorough, and highly educated on all of this. What an amazing group. I thank you for your response - I have read it many times. Total side note...my son's name is Alex(ander), but goes by his initials, AJ. Kristi (on a) MissionMama

Hi everyone... Just curious on this one. We just got our results back for DS 11, and it came back "highly likely"....in fact the arrow couldn't have been any higher on the red integrative result slider. Crazy high numbers in all but the LYSO-GM1 which was exactly at 320 which was highest value in the normal range. Dopamine D1 was 8,000, Dopamine D2 was 32,000, Tubulin 4,000 and CaM Kinase 210. I don't know what any of those even mean...Google here I come! Anyway, I was just wondering if anyone has ever gotten anything less than a "likely" or "highly likely".... Any "unlikely" recipients out there? Anyone care to nutshell the explanation behind each titer? I'm sure it is in the 21 report that we also received...! We had amazing results from our steroid burst, but slowly, and ever so slightly, symptoms/behaviors are returning.... Waiting to see if IVIG will be next. Thanks for the help! Kristi (on a) MissionMama

Me too. Thank you. MissionMama + DS

Hi All, So....here we go. The idea for improvement and restored health actually makes me feel a physical sense of nausea. I feel like there is so much too gain, and even more to lose? What if we don't get the response everyone is hoping/expecting?? DS 11 entered first debilitating exacerbation on 10/25....21 day course of abx completed 11/28...by 11/30 symptoms started returning (OCD, mood swings, oppositional behavior, etc). By 12/1 it was unmistakenly familiar! Started prednisone this AM.... 60mg for 5 days (Dr. K recommended 40mg, but our immuno bumped it up to the 60mg...not sure why). This was all according to our treatment plan...but we had the 5 day window between finishing the abx and steroids because of doing the blood draw for the Cunningham Panel (immuno decided we should do this after DS had some elevated antineuronals on his test and screwed up CBC* test). Anyway, clearly the abx were doing a lot of good - I think we took it for granted as the improvement seemed slow...but then wham! What should we expect in the way of side affects from the prednisone? How soon? How long? When did any of you see positive results? Any other thoughts? Input? Thanks to all.... Kristi (on a) MissionMama *low WBC, platelets, and hematocrit, concern over reactive lymphocytes which were abnormal, and low ANC....

Thanks to all of you.....and helpful to remember (although I'd like to forget!) that this is a marathon, not a sprint. Ugh. Apparently "they" aren't concerned about the elevated eosinophils...but the labs that came back from Mayo show reactive lymphocytes...and this is apparently "abnormal" and indicative of the body fighting an infection as I understand it. We were supposed to start on prednisone yesterday, but since the immuno doc wants to send for the Cunningham panel, I am glad we hadn't started them - literally hours from the first dose! We will get a blood draw on Monday and they will freeze the serum until the actual kit arrives. Hopefully we will see some improvement with the steroids....what should we expect there? I'd be interested in some input there! Did any of have the reactive lymphocytes?? Or know what else that could be indicative of?? Thanks so much. Kristi (on a) MissionMama

Hello all, I have posted a couple of times, and the help I have received has been fabulous. Amazing, really. Our journey has been relatively short....with a severe exacerbation one month ago, right after my DS 11th birthday. Debilitating onset of OCD that then evolved into mood swings, intrusive/running thoughts, and depression...he has missed 4 full weeks of school. Negative for all strep - including ASO titer, Anti-DNAse and Streptozyme. Of course this isn't a surprise for us this is likely not our son's first exacerbation. Earlier episodes were explained away by age, etc. Though we had never seen any signs of the OCD prior to this exacerbation. Anyway, we saw one of the top pediatric immunologists here in our area (Seattle Children's Hospital) and he ran labs in addition to the tests mentioned above: CBC, Paraneoplastic autoantibody eval, Anti Neuronal Antibodies. Of course I called yesterday to see if results were in as we were nearing the 2 week mark. The labs were in, but had not been seen by the doc for interpretation. I asked for the results to be faxed to me, and the assistant begrudgingly agreed. So, here I am with raw data and have to wait until Monday for the interpretation. That said, we had our phone consult with Dr. Kovacevic this past Monday and so I sent him the labs....his response was "Althoiugh Strept antibodies were normal antineuronal antibodies are elevated what would support Dg. of PANDAS. Let's see what happens with antibiotics and/or steroids." (DS is on day 15/21 of abx, with some relief of symptoms on day 5 or so....but then stalled and of course who knows if it is just time or abx that has any effect at all....). My questions.... Besides his blood count being what looks to be all screwed up (low white blood cell count - with high eosinophils and lymphocytes), low hematocrit.... all values were negative for the brain auto antibodies, expect for the "Anti-Neuronal Antibody" that had a value of 31. Apparently this is within "normal" ranges according to the lab (mayo clinic), but is is actually abnormal based on all the other values were zero/negative? And coupled with what Dr. K described as elevated? We are so confused....helpless....and as each and everyone of you knows...how terrible to watch our son be tortured by this. Any input for me??? Thanks so kindly. Kristi (on a) MissionMama

I am interested in getting feedback from those of you that have had/or considered having this panel run for your children. 1) Actual turnaround time (they say 6weeks)? 2) what did the result "rating" come back as (Unlikely, Likely, Highly Likely)? 4) if tested, was your child taking abx? 3) if you decided not to do it, why? Thank you so very much. Kristi (on a ) MissionMama

Oh, what a fabulous group.... My first post outlines our "story"....topic title: PANS/PANDA with negative ASO titer? So desperate! My goodness how much I have learned here just in the past 48 hours. THANK YOU. I am hoping I can get some good input as to a list of questions to have prepared for our appt. with the immunologist on Tuesday (11/12). I have read about the basic blood work ups, titer this titer that, lumbar punctures, puncture this puncture that, this bacteria, that parasite, tick, fleas....I am afraid my head is swimming trying to pull out relevant information! So....have at it, redirect me to another post if I am making a total annoying redundant newbie request here. I can take it, trust me. Thanks in advance, Kristi (on a) MissionMama

Yes, throat culture was negative (both rapid and 48 hrs. to the lab)... I will look at Dr. Schweig, thank you.

Good grief - I have no idea how to set up notifications on this darn thing!!! I am shocked at all the responses here!! I have only been alerted to PM's....such a newbie. Thank you all so much for your thoughtful responses!! The past couple of days have been huge, as my dragnet approach to calling and emailing everyone I think would be able to help....some of that has paid off immeasurably. 1) We have been fast tracked past the 3+ month wait to see one of the top pediatric immunologists here in Seattle, our appointment is Tuesday. 2) Confirmed phone consult with Dr. K for 11/18 3) Corresponded with Dr. Thienemann (Yes, both Dr. T's confusing...but I figured it out!), and she was great, and also validated Dr. K. 4) Our ped contacted Dr. Swedo directly - she suggested abx immediately (thank goodness, as I had requested this over a week ago, but I won't stay hung up on that...). So, we are 2 doses in to a 21 day 2x per day of Cefdinir. I don't know what many of your ds or dd's underlying health situations were, or (mis) diagnoses have been, but I think that because my son has a completely clean health history for his 11 years of life (Minor sensory issues as a toddler that he modulated and just worked through has he matured....which was clearly harder than most kids I have known (my dd!!), but certainly nothing close to seeking formal intervention for), people are paying attention to it.... my first fear when he fell off the cliff was that he must have actually gotten into some sort of toxic matter!! Anyway, we have things moving....but as each of you so painfully know (and way more than me, for much longer) it never moves fast enough... More thoughts? Thank you . Kristi (on a) MissionMama

Thank you to everyone! I do have a phone consult scheduled with Dr. K for 11/18. I am ignoring the part where sending $500 payment in the mail feels sketchy to me, due in part to how many others on this forum have likely done the same thing. JuliaFaith has sent me wonderful local recommendations, thanks Julia! SF Mom, we are not opposed to considering the Bay area, I will PM you. Aggie, a local MD (recommended by JuliaFaith) is not taking PANS patients...but did recommend both Dr. K and Dr. T....so again, some validation that we are on the right path and not completely going off the deep end with the drag net. We have called in every possible favor, and luckily one of our friends (a physician) went to med school with one of the immunologists at Seattle Children's, so I am not too proud to use the personal connection. I hope then we will rule other potential causes out.... I hope that the fact that my son has had not a single health issue, or any other diagnois, that could cloud what is happening that it will lessen the complexities to weed out. No medication on board, no supplements (not that I am opposed, but we just haven't seen a need).... all my thoughts so jumbled. I also recognize, as mentioned by cobbiemommy, that having an 11 yo that can communicate effectively, with the previously mentioned clean health record, is a huge advantage. Ugh, I am sighing along with everyone else out there. This SUCKS no matter what the details.... Wish me luck - and well, I will certainly be around. Kristi