Rain

Thank you. I needed this.

Thanks everyone.

I have been away from this forum for a long time, but now need some help. My DS14 was diagnosed with PANS nearly 5 years ago. Since then we have had ups and downs. He has had antibiotics, IVIG, steroids etc. He was a patient of Dr. K and now a patient of Dr. T. I feel like Dr. T and Dr. K have saved his life. Sometimes he has no symptoms at all. Usually he is about 85%. We have declared 85% is "good enough" most of the time. Recently he has been depressed. No significant increase in OCD or other classic PANS symptoms. I don't think there was a specific trigger - but he admitted to picking up a knife with the intent of committing suicide. Dr. T recommended some counseling. The first counselor we saw said he needs a psych eval - and the counselor will not work with him unless he is evaluated by a psychiatrist. He has seen three psychiatrist in the last 5 years - and every time they just want to medicate him, and are not supportive of a non-medicated approach to therapy. I don't want to be a bad mom here - I have nothing against meds per se. I just know that most PANS kids do not do well on many of them. My son does not want to go on meds. I think if we forced them, he would be really mad, and probably even more suicidal. (I have tried to tell him we would go low and slow - but he will not be persuaded. Maybe it is an OCD thing.) My questions: Broadly - what do you think I should do? Are there supportive psychiatrist out there? If so, how can I find one? Are some medications tolerated well by PANS kids? Which ones should be avoided? Background - He has gone through puberty. At first I was optimistic that we were seeing the end of PANS - but obviously things are bad now. He is currently on a full dose antibiotic (Suprax) - initially for a sinus infection. He has been on that for about 70 days now. His blood titers for things like strep and mycoplasma have only improved in the last few months. There is no Lyme (tested many many ways and times). His blood indicates chronic sinusitis - but also appears to be improving. We will probably try one more IVIG this summer - but at his age it may not work. About 6 months ago he developed a facial tic - which was a new symptom for him. We saw a neurologist who prescribed Guafacine. My son did not want to take it - so we did not force it. The tic is hardly noticeable - so we just chose not to fight that battle. Thanks - I appreciate any help you can offer!

Update - I did talk with Dr. K. He recommended the "Streptozyme" test. After the negative ASO and AntiDNASE, the streptozyme WAS POSITIVE. I feel like I should know by now that it is always strep, even if we never get a positive test result. Now we will treat for strep (again - we already did one course of treatment) then do a 5-day steroid course (per Dr. K). Dr. K thinks the tics will resolve in 2-3 weeks.

Thanks all. Re Dr. K - I have been trying to contact Dr. K. In response to my email, he said my son's file is closed,and I have to call his office. I have called the office a few times, and keep getting the answering service. I think I will get more aggressive about calling. Re stress from school/allergies - maybe. It started a couple weeks before school started. He was having allergies at that time, but the allergies have subsided, and the tics remain. They may even be getting worse - but it is hard to say because they vary from day to day. Re strep carriers - I don't think so. Everyone in the house gets tested "all the time." No one new has been around, and no new animals. He did start school - but that was after the tics started. He seems so happy and otherwise healthy. I would leave it alone, but I have am terrified of a full scale relapse. Thanks again for your thoughts.

My DS who is almost 14 has suddenly developed a mild facial tic (about a month ago). Tics were never part of his PANS presentation. It is not debilitating, and hardly noticeable. He is currently on prophylactic augmentin, but no other medicines. We increased antibiotics for 10 days with no change. We also got his blood tested, and all levels are normal, and strep titers are at an all-time low. Background: Around October 2010, DS developed sudden OCD. In April of 2011, he had not improved with CBT and EPRT - so medication was recommended. Almost as an afterthought before writing the prescription, his psychiatrist said, "And we've ruled out strep, right?" DS got a rapid swab that day - which was positive - and our lives were suddenly changed forever. We tried antibiotics, saw some improvement, but the improvement did not last. Ultimately we found our way to Dr. K, who recommended IVIG. Our treating pediatrician ordered the IVIG at a local hospital using Dr. K's protocol. It seemed to work for about 8 months. He then relapsed in May 2012 due to a pneumonia infection. He got a second IVIG in Sept 2012 (this time administered by Dr. K). Though the second IVIG took longer to "work," since about March of 2013, DS has been 90% symptom free. He is well into puberty (voice lower, and he is 6 feet tall). Questions: So what do we do about this tic? He does not notice it, and it is most pronounced at night. He has no other PANS symptoms. Is it worth doing anything when it still almost completely OK? Do you think this is an indicator of a different infection? Thank you for any guidance you can offer!

My son needs the lab "circulating immune complexes (c1q, C3d, Raji cell immune complex). Dr. K wants the tests run. I asked my local pediatrician to put in the lab order (for insurance reasons) - and neither the pediatrician nor the lab "know what those test are." The lab suggested that they are genetic tests which would require us to get insurance per-authorization. Is that right? If not, is there a code or another name or something? I googled it, but could not figure it out. Anyone have guidance? Thanks so much. Background (in case you are interested): Long story condensed: DS 12 was dx with "classic" PANDAS (sudden onset ocd and positive strep infection) in late 2010 (age 10). After trying other things with little improvement, we saw Dr. K who recommended IVIg. We convinced our local pediatrician to order the IVIg in August 2011 - and it worked! For about 9 months we saw 95% recovery. Then in summer of 2012 he regressed - to about 50% recovered. Dr. K suggested a second IVIg (Sept 2012) but my DS did not improve, in fact he declined even further. By December 2012, he was the worst we have seen him. We tried different antibiotics with very slight ups and downs, but no significant change. We had his throat swabbed like 5 times - and all the family members swabbed multiple times - no positive cultures. Finally - in February 2013 - we ran blood test -- sure enough - elevated AntiDnase levels (significantly higher than before the second IVIg). So, now we're decreasing antibiotics, and running a full blood work up to try to see what is going on. Hence, the question. Thanks again.

(Sorry for all the typos! On mobile device!)

My DS12 had his second HD IVIG 10 weeks ago. After first IVIG (August 2011) we saw recovery after 12 weeks - which increased gradually to about 90% recovered. He hovered at 90% until he got pneumonia in May 2012 - and slid to say 40%. He bounced back to 75% recovered over the summer so we decided on a second IVIG in September 2012. About a week after his 2nd IVIG - his OCD came back in full force - as bad as I had ever seen it. He was in Augmentin 875 twice a day. I hoped he was just "turning back the pages," but instead of improving, he got worst. We continued the high does Augmentin. On my insistence tried the "Saving Sammy" dose of Augmentin XR. That made him "worse yet" so we switched back to regular Augmentin (and he was maybe slightly better). Finally about two weeks ago we switched to Zith. The Zith seems to be better - but he is still way way worst than he was prior to his second IVIG - maybe up 15% from his worst. Is it OK to panic? We could do a steroid, but the Dr. recommends we hold off so not to undermine the IVIG (I admit - I do not understand how steroids interfere with IViG). Other ideas? What have I done? I feel like I should have left "well enough" alone. Suggestions welcome. Thanks.

Thank you everyone.

We doing 500mg BID - after IVIg. So far all is good, but I don't know if it is the IVIg or the Pen VK!

Thank you so much. I'm still not sure what to do. I don't really have a PANDAS doctor. I took my DS11 to Dr. K, but then he received IVIg treatment (based on dr. k's recommendation) at our local hospital - under our pediatrician direction. Our pediatrician wants to help, but just doesn't know what to do (and may think I'm a little nuts). My DS9 has been great this weekend - totally 100% his old, sweet, compliant self. DS11 also continues to do great. Part of me want s to leave "good enough" alone. But, you're right, we need to nip this in the bud - or we're just waiting for the train wreck. Oh, I did not mention my DS3, who had uncharacteristic separation issues this weekend. Here we go again? Is PANDAS/PANS everywhere, or do you just imagine it is everywhere once you know about it...

Hi all, My DS11 has PANDAS (exact onset unknown - can recall urination issues going back several years - definite OCD symptoms in October 2010 - debilitating OCD by December 2010 - diagnosed PANDAS April 2011 - got IVIg in August 2011 - doing relatively well currently - knock on wood). I don't know what is wrong with, or what to do about, my DS9. Here is his story. Early on in third grade, probably around October 2010, his teacher called us in for a conference because of his poor performance in school. Prior to that he always did fine - never outstanding - but solidly "OK." The teacher claimed lots of things were going on, but most obvious was his handwriting was completely illegible. He never had good penmanship, but this was really really bad. With all the issues going on with our other DS (who in hindsight was having a PANDAS exacerbation at that time), we basically thought he was just trying to get attention. Also, he is young for his grade, and we have "always" questioned our decision to send him to kindergarten early, versus holding him back a year. But, we think he is really smart, and very social. The third grade teacher demanded learning disability testing. The test came back showing that his IQ was high, and he the testers found him to be very cooperative and capable, "Yeah his handwriting is bad, but when he takes his time he does fine - he's just a typical boy, blah, blah." We smugly looked at the teacher, reassuring ourselves that it was a bad teacher, not our kid. With all that was going on with our other PANDAS kid, we considered the exercise an annoying, unnecessary sideshow. Now, in fourth grade, things are just as bad if not worse. He has a teacher that we really like (who taught our other son during last year's PANDAS stuff with him), so we know it's not the teacher this time. DS9 had his tonsils out when he was 5 - not because of infections, but because they were really big and interfering with his breathing during sleep. He has no known strep infections. In July 2011, we had his strep titers tested, which were sightly elevated, but nothing alarming. December 2011, three weeks ago, his titers had declined to the normal range. He has had on and off urination issues his whole life. But, with both kids and urination issues, we sort of just decided it was "normal." We just wash a lot of underwear. ;-) He has always had seasonal allergies and takes Zyrtec during spring and summer (we never "tested" for allergies, but they are obvious, so his Dr. recommended the Zyrtec without tests). Behaviorally, he is getting worse - he has started banging his head in the wall when really frustrated, usually about school work. He has started getting lots of anxiety about his school work. Today, we had to get him from school because he got in "trouble" and panicked about what our (his parents') reaction would be, and refused to go to lunch. We're not that hard on him. We suspect (due to a partial confession) the real issue was that he was worried about what his peers would say about the incident at lunch and did not want to face them. Whatever the cause, it was an uncharacteristic disruption to his (and our) day. He is in occupational therapy for his writing. I can't tell if it is helping. He enjoys it, so certainly there is no harm! His handwriting is better when he slows down, and his grip is improper. (BTW - I gave the OT the "PANDAS and OT" article that someone on this forum posted. She was appreciative and interested, but it really does not affect what she does.) Anyhow, his self esteem is so low, and declining. I need to help him. What should I do? I'm thinking of asking for a litany of test: lyme, mycoplasma, allergies. What else? Do we look for strep in the gut or on his skin - or are watching the titers enough? Do I need to take him to Dr. K? Acupuncture? Diet? Is it PANDAS? Is there another reason a kid would suddenly be unable to write legibly (is it just a poor grip and the fact that he tries to go to fast)? Any suggestions are appreciated. Thanks!

I'm so sorry to hear that. Don't lose hope, we saw nothing until about week 8 post IVIg - and he started a dramatic improvement. Now we're at week 12 and having a little backslide this week. I know it's not easy, but hang in there.

Hi all, Just thought I'd post an update. We are 11 weeks post HD IVIG. We went with 2.0 g/kg. Doing really well. Not 100%, but happy, doing well in school, joined the basketball team, and can actually do CBT/ERPT, whereas before, those therapies were useless. Background - our son had not-so-sudden onset OCD Oct-Dec of last year. By Dec, it was debilitating (hand washing and cleansing rituals, invisible barriers, unable to enter/exit rooms, unable to wear many clothes, etc. etc) It took us until April to make the strep connection - he swabbed positive. Immediate, remarkable results with penicillin, which did not last. Tried Augmentin - but that was really really hard on his stomach. Tried to get into the NIMH study, but after much consideration was rejected. But, those great professionals took the time to recommend Dr. K. Dr.K confirmed PANDAS diagnosis, and recommended IVIg. Our local Dr.was willing to try IVIg - reasoning that it is a very low risk option. So, we got Dr.K's protocol and the NIMH protocol, and our Dr chose the one from the study. We did it over 2 days - outpatient- at the local children's hospital, and insurance covered it! NIMH (and Dr.K) also recommended prophylactic antibiotics for a year. He is doing 500 mg pen VK BID. I'm not sure if post IVig, titers are meaningful, but FWIW, his titers are down, but still above normal range. But, the titers are going in the right direction. We have a weird symptom, blood in the urine. That happened once pre-IVig, and happens again a couple weeks ago. We saw a nephrologist when it happen before, and again recently. We are in the middle of a whole bunch of tests. So far, we can't figure it out. (I posted about it previously, and had some great replies if anyone is interested. But, none of those suggestions have led to any conclusions...) Hope this is helpful to someone. This forum has been such a great resource to me!

BCBS of CA covered our DS's IViG - PANDAS was the code. I did not expect coverage and was pleasantly surprised. The pre-auth was denied - so we (unprompted) sent in our documentation (letters of various Drs., psych records, lab records) - and then they just paid! Not what we expected. Good luck to you!

We had a very similar experience. I will send you a PM.

Hello - First, thank you all for the support and guidance your dialogues have given me over the last several months. I am a frequent lurker - infrequent poster - but I follow you all and pray for you, and for other lurkers like me who are going through this ordeal. Our story: our son started exhibiting OCD symptoms last fall (at age 10). After several months of unsuccessful CBT - the psychiatrist insisted on a strep test - even though our son showed no symptoms of classic strep. The rapid culture was positive, and his ASO titers elevated (April 2011). Long story short, our DS was eventually rejected from the NIMH IVIG study, but those (amazing) experts recommended that he see Dr. K. Dr. K confirmed PANDAS and recommended IVIG. Our pediatrician (though he initially called PANDAS a "controversial diagnosis") totally came around to our side, and ordered IVIG based on the NIMH's (and loosely on Dr. K's) protocol. We got the IVIG locally at the children's hospital here in Madison, WI on 8/17/2011 and 8/18/2011. Since IVIG our DS has been on a prophylactic antibiotic - (pen VK at 250 BID). Today he had blood in his urine. [He also had diarrhea today - but he has had that on and off for several weeks - and under our Dr.'s guidance, we are experimenting with foods and probiotics in the hopes of controlling that.] Any thoughts about the blood? He had blood in his urine once before. In May (shortly after the PANDAS revelation) he was on 30 days of augmentin. Right after he stopped the 30 day course, he had blood in the urine. At that time we ran every test we could think of, including a kidney ultrasound. The blood disappeared within a couple days, and we assumed it was some sort of minor trauma. By the way - post IVIG, we have certainly seen some improvement! Not yet 100%, but we are optimistic. I hope we are not on the verge of a setback. Thanks so much.

My ds10 got A high dose IVIg treatment for PANDAS in mid August. The pre-auth for the drug was denied. So, we expected to have a long appeals process ahead. But, we got our insurance statement today, and it is showing everything as paid or negotiated away by the insurance (less our 10% copay). The diagnostic code was PANDAS. Is this a mistake? Am I missing something? I'm too stunned to even celebrate!

Thanks all. We're here - Gamunex is a-drippin'. Insurance appeal initiated. :-P

OK - I called the nurse, and got it worked out. Apparently on the order, no brand was specified. I clarified that it should be Gammunex - but they can't get the drug until Wednesday. So IVIG in two days - not tomorrow.

Long story short, we convinced our local Dr.s to administer IVIG for my DS10's PANDAS based on Dr. K recommendation, and the NIMH's IVIG PANDAS study. Both specifically recommended "Gamunex." 1. Fighting for insurance coverage today, we found out "Flebogamma" was ordered for the IVIG treatment scheduled for tomorrow. I understood that Gamunex was specifically recommended because it has the fewest side affects. What is Flebogamma - and is it an OK substitute? 2. I am feeling really uneasy now. While Dr.s here have been supportive (and basically have done everything that I have asked), I am tempted to pull out of the procedure for tomorrow, and arrange a trip to Chicago and have Dr. K administer the treatment. Can anyone help?

Interesting. My DS10 is terrified of pools (before PANDAS was on the swim team). He has identified pools as the single trigger that scares him the most. I wonder if he has (and you have) picked up on something... Good luck to you.

We are excited that my son will receive his first high dose IVIG next week. I am confident that we will see results, but terrified that it will all be for nothing if my DS (age 10) gets reinfected. At that, I have coached him, that after the IVIG, he is to carry hand sanitizer with him at all times, and use it after touching anything. He is not to use drinking fountains, and never is to share food. He replied, "so once my OCD is cured, you want me to act like I have OCD?" Exactly. Wish us luck.

OK - this is my third try replying. If I end up with three similar posts, just laugh at the newbie! Anyhow, Dr. K declined to suggested a dosage - saying it is up to the treating physician. So, I reached out to Dr. Leckman (who is doing the NIMH study). The study is using 500 mg of penicillin VK each day. I'm worried that won't be enough - especially with school around the corner. Any thoughts?