T_Mom

I can add that our d had OCD issues and then the sudden 180 changes w/ ODD behaviors started...I say the OCD morphed into ODD...it was episodic at first, and escalated to the point that whenever she was around us it was constant (she did attend school during this time--though we had to force her to go most days.) You might want to try to rate the severity and frequency of the behaviors, so you are aware of any increase that may be slowly happening. If it was me, I would get some solid PANS treatment as needed -- I feel like we literally lost a year last year--my kids feel like it too. (IVIG restored my d, who was and continues to be on azithromycin 250/day.)

Us too--IVIG made a world of difference. Our d had been doing alright with abx for about a year--then was exposed to strep during a playdate. She started to flair with obvious OCD, dropped from A's/B's to D's and F's..School declared her ungrade-able. The OCD then morphed into SEVERE ODD. We spent time battling insurance and finally, after about 9 months of brutal OCD/ODD she had IVIG. Literally, within the first 48 hours she could be in the same room as us, looked at me and said "I feel happy again Mama"...(she had been so violently ODD that she had to stay with friends for the month prior to IVIG. Yes, IVIG made a tremendous difference--and continued to 'bring her back' for the next 6 months-- School work was a complete turn around. Some blips of OCD/ticcing when she has been exposed to others being ill (especially strep once in school!) But NOTHING like it was--and she is herself again. I only wish we had done this for her earlier--it was life changing.

Elijomom,in the paradigm of PANS, the immune modulating therapies when used effectively (IVIG and plasmapheresis) interrupt and break the "cycle" of reaction--so that the 'chronic' reaction is stopped by using the bigger gun (bigger and more effective than abx that is--) I believe the PANS researchers would agree that the immune modulating therapies are the big guns for the autoimmune reaction of out of control PANS. SSRI's may have a similar immune modulating effect certainly. Here are a couple of earlier discussions on the immune modulating effects of SSRIs... http://www.latitudes.org/forums/index.php?showtopic=6667&st=0&p=52788&hl=+immune%20+modulating%20+effect%20+ssri&fromsearch=1entry52788 http://www.latitudes.org/forums/index.php?showtopic=9390&st=0&p=78781&hl=+immune%20+modulating%20+effect%20+ssri&fromsearch=1entry78781

Glad all went well Missjo--and I hope you see some solid turn around now in the next weeks and months. We were in for pex for anorexia OCD issues too, and it is very scary. We saw OCD improvement (the leaving of intrusive thoughts) within the first month or so after pex...I do think it is week to week progress we should all be watching for, not day to day. The brain takes time to heal. May your son be well and healthy again and keep improving. (By the way, we found a AN psych that is quite effective--in helping, and willing to work with PANS issues.) PM me if you want her name.

I absolutely agree -- that you cannot wait 2-3 months with your child like this (for a myriad of reasons!!) Can you get a trial of antibiotics from your pediatrician, have the ped. call one of the PANS doctors to have a phone consult if necessary, you cannot wait 2-3 months...things can get worse.

"Sudden onset" is over-rated. If a child reacts to treatment, and you see a "sudden effect" from an anti-inflammatory or immune modulating treatment, now that is a much clear-er indicator in my opinion, than trying to determine the definition of sudden onset.

I might suggest asking your doctor to call Dr. L as she uses steroids, in certain cases, to treat PANS -- this type of support could really help your doctor!

Thank you Dr. Goodman!

Debbie1-- I don't know. I have to agree with EAMom, that the real issue of autoimmune process will still cause symptoms, at some time and next time they may be different. In our daughter's case she was treated with the very first PANS episode (which was anorexia only) with only anorexia treatments--because we did not know better...the food compulsions went to very low level for then about 5 months and then she exploded with sudden onset OCD. (ticcing, OCD-ing, tap-tapping, eyes held shut, etc. etc. stopped speaking for 4 weeks, etc.) We thought she had a brain tumor, it was sudden and extreme (regression, urinary issues) Yes, I think the underlying issues will remain -- if it is PANS anorexia -- and yes, without the PANS treatment, it will come back, and may come back again even if treated. --BUT at least with IVIG or pex there is a re-stabilizing, a "re-booting" of the immune system which may be enough to stop the cycle.

We have also found that steroids have made a life-changing difference for my older d., 3 times now in 4 years. Each time these brought her out of severe episodes. Having said that, I will add that for my younger d they did not seem to help (twice.) Our younger d finally did have IVIG, and it had a wonderful effect. (She since has been exposed to strep and having some issues now--but nothing like before IVIG.) For 4 years I have watched this forum and for some steroids have been enough, others have needed more. The important thing to me, is to not settle for the "new normal" that PANS presents. To try to help, and then try again and/or something else, if that is not enough.

Debbie1--I want to add one more thought-- and that is that IF it is an infection-triggered PANDAS reaction which has anorexia as a symptom, it is still anorexia. With this horrible episode this winter my daughter had severe food restriction, lost a lot of weight, and was over wrought with obsessively counting calories and restricting. She became so malnourished that we were one step away from the gastro tube in the hospital. We have worked (both times) with teams of doctors specializing in anorexia, a psych. and nutritionist, to get her stable again. It is still anorexia, just with the unpredictabel trigger of reaction to an infection (PANS.) This has been, by far, the most frightening thing we have seen, because the severity has been extreme. To anyone seeing ANY food restriction issues with a PANS / PANDAS child, I cannot say it strongly enough that one must be mindful that anorexia is life threatening and can get very "bad" very fast. Nip it in the bud, if you can, with skilled anorexia doctors using the Maudsley method. This works! It is a method which emphasizes the physical reality that the person who is mal-nourished does not think straight. Their brain is affected to the point that they do not (CANNOT) see reality clearly--and the emphasis is that physically the issue must be to get the brain functioning in a rational manner again by re-nourishing the brain to a normal state. This absolutely works.

Our d has gone through the anorexia/PANS, twice now. The sudden onset first hit when she was 9, as in "one day she woke up an anorexic(!)" no joke-- She lost 10 lbs in the first 14 days, and the obsessive thoughts re: being too fat, need to compulsively exercise, etc...were night and day. Weeping about being fat, etc. (which she was not.) With the first dramatic episode it was the first time she had any OCD issues...so we thought it was anorexia, pure and simple. The confounding fact that anorexia is very rare in children as young as 9 helped tip us off to the possibility. Mae Sokol noted that the EARLY onset, as well as sudden-out of the blue onset, may indicate PANS. The second episode was this year, and in the winter we had pex. I would suggest to anyone dealing with this that they consider getting their child "re-nourished" to a stable state, whether it be by hospitalization, gastro tube, whatever is necessary and THEN do pex if they are thinking of it. A nutritionist told us she would choose to IVIG if given the choice between IVIG and pex, and in our case we are convinced our d's less than best response to pex was due to her brain not being in a stable state. --for what it might be worth, that has been our experience.

I like it much better than "conversion disorder" ! Dr. T. is wisely choosing his words carefully, and the bottom line appears to be the same as PANS -- illness triggered inflammation. He notes, "The Leroy Syndrome is a PANDAS variant. All cases examined thus far have a GABHS or mycoplasma trigger. All cases are responsive to anti-inflammatory agents." What needs to be said now should be by the girls and their parents, as they improve--I hope they will share their stories to benefit others.

If anyone can tell us the dose (+ child's weight) for the antibiotics used post-IVIG in the study ?? I would really appreciate it--out of curiosity and for the general knowledge-base here--thanks.

I am so sorry -- what an incredibly frustrating day! I can relate, having seen multiple doctors for about a year before FINALLY finding one that knew how to treat PANS/PANDAS. A normal, mainstream doctor even! Save yourself the time, and money! Go to the list of doctors that others have used that know about PANDAS and get your child there--it is the only way to get help. (Can you tell I have given up trying to educate or "convince" the doctors we see personally--forget it, your child deserves to be treated.)

Hi DCMom--both of our girls got braces this year, in September. (These new braces are so different from when I had them!) --they have the small metal brackets on the front of the teeth. No problems that I can correlate with appointments or installation, thankfully! They are both on continuing abx, and I do give them Advil on appt. days for the mild discomfort. Good luck!

Kim--Thank you for this post. Your insightful posts have helped so many of us, it is so good to hear your current situation. Thank you for encouraging us all.

Hi Cobbie-- This sounds encouraging! You said that "he has done really well..until today" -- That is GREAT! the fact that he is "not walking as awkwardly", and he fixed his own breakfast, -- sat at the restaurant -- and even "away" from you!!! Fantastic! Sounds to me like you are seeing really great indicators, and soon! 9 days in to the new treatments, this is really encouraging. There will always be 'blips' along the way as the reactions fade. I have found my own tendency is to scrutinize each day, when a treatment change is made, instead of trying to step back and look for a week-to-week trend. This trend sounds really, really good to me! How long is the steroid burst and may I ask how high for his weight? Take care and I would certainly be encouraged with this--

Wonderful Update -- Thank you Dr. Susan Swedo. Thank you NIH! Our children thank you and future families should thank you--this update should make a tremendous difference in the lives of many children in the future--

re: the reference to "3" episodes and it becomes chronic... Most of our kids have had numerous blips, up-ticks in symptoms, do each of those qualify as an "episode" ? The nature of the beast of PANS IS that it IS episodic, and kids can flare with simple exposure to illness in others--time and time again. I would read that with a grain of salt -- just my advice. I think the take away message is to promptly and effectively TREAT the symptoms with medically researched approaches to PANDAS/PANS -- as noted on the updated NIH webpage!! ____________________________________________________________________ We all know that left untreated, our kids lose years of their lives to this illness -- and the horrid behaviors/habits/compulsions can, of course, become "chronic"...thru habituation if nothing else. -- don't take that as '3 strikes and you are out', however! Rather, I think the message is to use effective, medical treatments for PANS/PANDAS and beyond that to use targeted therapies, and quickly, as needed, time and again.

Wonderful! Wonderful! Thank you Susan Dailey, Dr Jenike, and OCF!!!

Missjo--I just sent you a pm. Yes, we have been through this.

This looks amazing -- I just skimmed it and this may be IT as far as the connection so many have been looking at in the lyme/PANS relationship-- Wow!!! Those of you more medically oriented -- we need an interpretation!

OK MissAnna, now you have an Australia contact (!) in case it is Brisbane, Australia...but if it is CA I'd suggest a CA PANDAS parent may be able to help-- nice pick up of the details there Ozimum!

Hello MissAnna, I am glad you found this forum, (though sorry you have had to!) Brisbane, Australia, -- right? If so, try searching for Ozimum and sending her a pm, there is at least one other Aussie on the forum, but I cannot remember who-- Ozimum should be of help though-- All the best to you.