T_Mom

Joan -- Wow-- so good to hear this type of positive outcome!!! Wonderful. Can you tell me: 1) what is OCDI ? 2) how do they work, inpatient? outpatient? 3.) Are they therapy + medical treatments? 4.) Did they prescribe and deliver the IVIG for PANDAS? 5.) Was it high dose ? Low dose ? 5.) Who there did you see--would you recommend it? \ forgive me, this is the first time I have ever heard of this option-- thanks

I agree, we are all "walking a tightrope" hoping upon hope to teat our children effectively. Tindamax obviously has some type of "other" property that gives it the reputation as a "cyst buster" among the LLMDs. If a child has PANS/PANDAS, we would all agree that treating the triggering infection, whether it be "strep" or "lyme" or any illness, would be prudent and necessary in order to quell the autoimmune-cascade reaction. What I keep coming back to in my daughter's case is that SHE IS HAVING AN AUTOIMMUNE REACTION (or so we believe), which needs to be treated to alleviate the ensuing brain inflammation which is attacking the basal ganglia and CAUSING the ticcing, and absolute crippling OCD. Thus, we seek out immune modulating treatments -- be they anti-inflammatory antibiotics, immune modulating antibiotics, steroid burst, IVIG, or plasmapheresis. The premise of PANS is that it does not have to be strep only. I get that, and so true for us, though strep in others is a trigger in our case. Kimballot, I would be curious to know who and what type of doctor is treating your son--PANDAS specialist and/or llmd, alternative or mainstream? --thanks.

Thank you for the comments and support, much appreciated. I guess my problem is that here we are, my d is out of school (going on 6 weeks now), has had classic PANDAS/PANS OCD and ticcing, with raging, loss of attention, etc. and we are STILL here. It is terribly painful for her and for the entire family. I know you all understand. It seems to me, that the addition of lyme to the NIH PANS web-page, says that lyme may be considered one of many possible "triggers" which might, might activate the AUTOIMMUNE reaction we know as PANS. Thus, lyme may be a "trigger" but the AUTOIMMUNE reaction is the causative force bringing this horrible reality upon my d. It seems to me, that we got off track mucking around with the lyme issue of possible "cyst busting" using a potential carcinogenic abx, which in the case of PANDAS or PANS kids, may "bust" right through the "layers/walls" and enable the autoimmune reaction to explode. Could this be the case, I wonder? We don't know enough to know for sure, heck, that seems to be the root problem of all of this! Maybe, just maybe one day autoimmune cascades will be found to be the root cause of many mental illnesses. We presume that this is true for at least our rare (?) kids on this forum, for whom sudden onset OCD and ticcing, (and the host of other horrid symptoms) seemed to come on time and again when our kids were exposed to others with strep, or now others who are simply sick. We tried the lyme treatments to treat "suspected" lyme, when in our case, i can't help but wonder if we should be just focusing on the real issue at hand, the autoimmune reaction -- and trying to put out that fire as quickly as possible. just my thoughts, but I really feel strongly that we need to keep our eyes focused on the glimmer of hope we "know", thanks to the vocal few doctors who have shared their observations and experience.

I want to post this in case others are in the same position--I feel like yelling: Warning, warning!!! Tindamax had a HORRIBLE effect on our PANS/PANDAS d (13). She has been out of school for over a month now with classic PANS OCD/ticcing. Regretfully, after testing for lyme the blood results indicated some ind. bands. Tindamax was tried. We lasted two Saturdays, and then the prescribing llmd doctor said to stop and to increase Augmentin instead. (We had a weekend phone appt. in desperation.) Tindamax is supposed to help with lyme, as it crosses the barriers and is a known "cyst buster" -- Well, if your child is in a PANS or PANDAS exacerbation I cannot help but wonder (AFTER our experience these past two weeks) if the use of Tindamax could accelerate the autoimmune reaction -- make it worse -- as it is said to permeate "walls"-- if your child is in a PANS AUTOIMMUNE exacerbation could this open the flood gates? I feel we all need to be very cautious about treating "lyme" if your child has PANS. Yes, PANS may be triggered by a reaction to lyme initially, (that makes sense.) However...since PANS is an autoimmune reaction, if it is treated as lyme I can't help but wonder if great caution needs to be used as to how and with what it is addressed. Our daughter's OCD went off the charts, she developed a screaming vocal tic, screaming at us, counting rituals, destroying the house again, OCD intrusive thoughts take-over, it has been HORRIBLE!!! OK, so at first I thought "possible herx"...but really??? Finally we called the lyme doc this weekend and he said TAKE HER OFF--she is having a BAD reaction. TRY AUGMENTIN, double it to the SS dose of XR 2000mg a day and see what happens in a few days. This has all been a terrible episode -- but then to have this TINDAMAX issue...

I feel like yelling: Warning, warning!!! Tindamax had a HORRIBLE effect on our d (13). She has been out of school for over a month now with classic PANS OCD/ticcing. Regretfully, after testing for lyme (and 2k spent in one fell swoop), the blood results indicated the 'possibility' of lyme (some ind. bands) Tindamax was tried. We lasted two Saturdays, and then the prescribing doctor said to stop and to increase Augmentin instead. (We had a Sunday afternoon phone appt. in desperation.) Tindamax is supposed to help with lyme, as it crosses the barriers and is a known "cyst buster" -- Well, if your child is PANS or PANDAS I cannot help but wonder (AFTER our experience these past two weeks) if the use of Tindamax actually could accelerate the autoimmune reaction -- make it worse -- by opening the blood brain barrier if your child is in a PANS AUTOIMMUNE exacerbation. I feel we all need to be very cautious about the misleading issue of LYME and PANS. Yes, PANS may be triggered by a reaction to lyme initially, (that makes sense.) However...since PANS is an autoimmune reaction, if it is treated as lyme I can't help but wonder if great caution needs to be used as to how and with what it is addressed. Our daughter's OCD went off the charts, she developed a screaming vocal tic, screaming at us, counting rituals, destroying the house again, OCD intrusive thoughts take-over, it has been HORRIBLE!!! OK, so at first I thought "possible herx"...but really??? Finally we called the lyme doc this Sunday and he said TAKE HER OFF--she is having a BAD reaction. TRY AUGMENTIN, double it to the SS dose of XR 2000mg a day and see what happens in a few days. This has all been a terrible episode -- but then to have this TINDAMAX issue... well, it has been just too much.

Thank you everyone for the great feedback, I appreciate all of it. From the natural remedy reminders -- to the use of Tindamax, thanks for your support. I am so tired of feeling like once again we are spinning round to find an answer. SFMom I have wondered if abx were low, thanks--and LLM, I will call if nearby TPotter thanks for saying T went OK for you all.

PTC girl can you tell me your child's weight and dose? We just started Tindamax 250 once a week for 90 lbs and it scares me.

Yes, the 2011 study was quoted to us twice by Blcross and then again by the federal govt. Office of Personnel Management as we spent most of 2012 appealing for payment of a 2011IVIG....we lost even though we had multiple proofs across measures of academics, OCD, rage extinction...they pointed to that article.

Thank you for reposting this excellent review.

I am hoping someone on this amazing forum can offer some perspective on this-- DD (13 now) had a very bad episode 2 years ago (after strep exposure during playdate.) Her symptoms were severe OCD, ticcing, academic failure, and then severe ODD. Episode lasted for 6 months as we appealed insurance for pex, finally did IVIG and all symptoms left within weeks. 180 degree turn around -- had a wonderful symptom free year last year. (Entire time on Azithro 250 mg) Sept. 2012, starts next episode which includes OCD, ticcing, ANOREXIA We do IVIG in October 2012...6 weeks later she starts eating freely again (right before she was almost hospitalized for anorexia.) HOWEVER, this time her OCD and ticcing ramped up after IVIG. We thought it was "turning back the pages" but it just continued and has not stopped. January 2013 through Feb. her OCD, ticcing, and ODD raging have increased. March 2013, Dr. adds Augmentin XR 1000 mg to the 250 Azithro (she has been on for 18 months+) After the Augmentin is added she shows steady improvements for the next 2 weeks! -- then plateaus. Bands 23 and 41 positive on Western Blot come back positive in Feb., so we go to see Dr J in Conn. last week. Dr. J prescribed Tindamax, once a week at first--we have not started it as after reading we are concerned this could trigger worse raging and OCD symptoms! Also, we only had two bands positive, and the results from Dr J (Igenex) have not come back yet--do we wait to see what the results indicate? Should we do something else? IVIG, pex? Abx increase? Classic PANS is what both kids have shown as over past 3 years. She has been out of school now for a month--due to ticcing and OCD, and not being able to function at school. Continues on Azithro 250 mg and Augmentin 1000 mg -- ideas? Help!

We were where you are two years ago, and for way too many months as we waited for insurance to clear a procedure, finally went ahead with IVIG, and within days she started (as she said) "feeling happy again." The raging tapered off within literally a few days after IVIG. Our d had been destroying the house, attacking, throwing lamps, holes in the walls, yep, very hard situation--and the weeks before IVIG we had her live with family friends-- It was horrible. We are there again, with an episode that went from bad to worse since September. Our doctor added Augmentin XR 1000mg to the Azithro 250mg she was taking daily, it is helping, we see improvements with the two-- much less raging, far less, but now ticcing about every two to 4 minutes, whole body jump. OCD is still there, but less ODD. (When not in an exacerbation she is a lovely sweet child. She was symptom free for all of last year.) She has been on the two antibiotics for about a week now this time, we saw improvements beginning around day 5. We are hopeful but waiting and will do more if needed. You asked, what to do to handle the behavior--I am a firm believer that if it is PANS/PANDAS then it is a must to try to treat it ASAP, so the living horror is minimized for you and your family. I mean physical PANS treatments to get at the root of the problem if you can. Antibiotics, and increasing antibiotics as in Saving Sammy, or layering, then on to other treatments if necessary. For us, (and we have done counseling/therapies, etc...) the best treatments have been antibiotics, steroid bursts, IVIG. The counseling could not reach my d when she was in a severe episode. We gave up on trying to restrain her as it only escalated the situation in our case. It has been just about as bad as it gets at the worst of it--and I know your sorrow and tired-ness all too well. Please know there are other parents walking the same path and holding out hope -- this is an illness that we know can be treated. Hold on, if it is PANS and is treated, they do get better.

T.Anna, Wanted to add my encouragement to the kind comments so far. I beat this drum about two years ago on the forum, again and again, and am needing to remind myself of it again now! Brain healing takes time... Be encouraged, greatly encouraged by the week-to-week TREND, and write down notes (if you can stand to), so you keep track of the little, tiny changes when you see them. As long as it is 2 steps forward, 1 step back, you are going in the right direction! It is not necessarily the big changes, but the trend of continuing better-ment (is that a word?) that we should watch. Are we moving in the right direction? Yes, it sounds like you are -- as an aside, it can take weeks for IVIG to kick in, as many of us have experienced. Hold steady, give it time, and as needed you will know if the trend is not going in the right direction.

I don't know if this would be of help or not, but to me it does sound like a physical issue which if I were you I would start reading re: biological approaches to ASD diagnoses. There is also a film called, "Autistic Like" which is a documentary a dad made of his experience with his son, named Graham, who was also diagnosed w/ autism symptoms, and through floor-time therapy was greatly helped--by much time put in by the parents of "getting into" their son's world, engaging him literally one to one for hours. It may be of interest. www.autisticlike.com Keep searching.

Thank you for the comments and ideas. I will think about each of them. I believe we did test copper levels but will definitely double check. All else came back negative. I am hoping and praying that the two antibiotics will have the desired effect, and if things go as they have in the past, we should see it within the next couple of days, I really pray so. It is the wait-and-see of PANS that "takes the stuffing out of you", (and I am just about as empty of stuffing as I can get.) It is like a repeat of the horrible nightmare from two years ago, complete with her remembering and referencing issues from back then even--how weird is that! After a fully good year+, and now this... I wish we could get her to take Advil, she was refusing any pills (only Azithro and Augmentin, vit B12 and D right now!)...but finally is taking the two abx, but refusing anything else for now. Thanks again.

I really need some viewpoints on this today-- Our d currently is up and down with a severe episode. After a great year last year, she started ramping up in the fall, with anorexia issues. Her eating issues got worse, and she was almost hospitalized. She was also ticcing. Did IVIG in Oct. and 6 weeks later she started eating again, like lightening had struck. After 4 weeks her weight was restored and she eats well now (though still rigid at times.) However in Dec. after exposure to illness in family members she started OCD-ish raging with infrequent ticcing (a few times a day.) The OCD/ODD behaviors have continued. She is now unable to go to school (this past week) and raging to the point of serious issues for no apparent rational reason. She has been on Azithro 250 mg (88 lbs now) for over a year. The doctor just added Augmentin XR 1000 mg once a day. *(We thought we were supposed to stop the Azithro and just do the Augmentin XR, but after 5 days of uncontrollable screaming and raging we realized that no, we were supposed to be adding the Augmentin to the already prescribed Azithro.) She has been on BOTH now for only 2 days -- HELP, any thoughts on this -- thanx

Our oldest had pheresis and then an IVIG a few months later. It seemed to help overall. Just reading your note above I guess I wonder if you shouldn't try Augmentin again? -- since it seemed to work before? Are you fairly certain the stomach upset was because of the Augmentin previously? -- or could it have been due to taking it on an empty stomach? If a mycoplasma infection showed up is that being treated now effectively? Have you retested to see if it is still active? I understand your desperation to try to treat -- totally, and I wish you the best of luck (and grace) for healing. I assume you have had every conceivable blood test done to rule out all other possible infections?

Misty, my personal opinion would be to go and at least see if he qualifies and get the testing done. It is free, it may tell you something. If neuro-psych issues are due to a CNS infection or inflammation that is important to know. Perhaps if you get to speak with the NIH group it would help clarify your decision to ask them some questions -- 1. What do they think re: "the possibility that one IVIG would be enough?" Can they estimate the number of kids for whom they believe one will be enough?...for 40%, 50% of the kids? 90% ? 2. Do they believe that early treatment will prove to be more effective then treatment after more than one, two, or three episodes? 3. others?

wow--very powerful clip, thanks

Hi Surfmom, I am SO happy for you, your daughter sounded very severe and sinking, as mine did when we first "ran into" PANS...4 years ago. We see Dr Latimer, is that who sent you to Duke??? You said the tests included: a lumbar puncture dozens of blood tests (for pathogens, allergies, toxins, cbc, anitboidies, viruses, immunoglobulin, etc.) ultrasound for possible teratomas, and antibody tests sent to Mayo. Was there one test that came back high or positive? Was there a blood result that sent you to IVIG? We have done IVIG twice for our youngest d and she is again, REALLY struggling, and we need help. Was there one doctor at Duke that you would recommend organize the intake/oversee the situation/tests? Way to go -- you have done a great thing in getting the tests done and treatments going--I will pray they are effective very quickly. My home email is tpv@umd.edu if you would rather respond there-- safe travels-- Tori

When our older d was first severely affected we did the first prednisone burst in the way that Dr K suggests. Dr K had told me that IF we were to see an effect from the prednisone it would be sudden and obvious. I kept pressing him as to what "obvious" meant, and he repeatedly said, "You will know if it works." We waited and saw nothing for two+ weeks after the prednisone burst ended, and then she "cleared" very obviously and very suddenly one evening. It was indeed obvious. Don't despair yet -- if I remember correctly I think Dr K said that it could take up to 3-4 weeks.

Thanks for this annual reflection-- I can relate to so much of it and appreciate reading it. In the past 4 years, we have been fortunate to have "good" months, even a year, in which there was no PANS -- not even a small tic in anyone! Today we have our oldest d (15) strong and clear -- no ticcing, no severe OCD, no anorexia, no wetting, no age regression, no crawling on the floor mute, and all the wiser for all of her experiences. She is a straight A freshman in HS, right now studying across the library from me--managing life and flying! We also have a younger d (13) who is again in an exacerbation -- (after strep exposure at school we think) -- thankfully she is no longer dangerously anorexic, but instead is doing odd ticcing jumps and OCD/ODD issues rising again--it is wearing, it is exhausting, and at times I border on despair. I told my husband today to "hold on" to the fact that we DO know this is treatable -- as it has been treated successfully before, and she came back, got well, became herself again. That is the encouraging wonder-ous news, that we have seen them come back -- we DO know it is treatable. When so many in the world do not have that hope, well--it puts it in perspective on those really, really difficult days.

I entirely understand what you are asking -- as I am asking the same at our house. (for severe ODD flair, with ticcing.) it is painful to be around, let alone watch. With Augmentin there is the issue of too much clavunate acid (sp?), that is why some will use the XR (along with the extended release aspect), but the Augmentin 1000mgXR has a lesser dose of clavunate acid, just wanted to mention that fyi. I hope you find some relief this next week for him.

Can someone remind me, have we ever discussed whether using one or the other, PEX or IVIG (if both were available) -- if one might be "best" depending on a child's symptoms? For example, if a child has ticcing or ODD/OCD might one, or the other, be more effective for some reason? Anorexia? erc. I wonder what the NIH study is showing re: the "most readily eradicated" symptoms with IVIG ? and those which seem to linger. Ideas? I wonder if Dr Swedo might consider having a meeting at NIH for Ps parents as she presents findings from the most recent study. Could be interesting to have a round-table of parent discussion.

For your daughter (I don't know her age) is the hiding in the closet and such below age-expected behaviors? Age regression is often a reported symptom. It may be a mild up-tic and pass as her brain continues to "settle" and normalize--good luck.