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We finally took our two P kids to a rheumatologist who ran bloodwork. Based on symptoms the doctor expressed a mild suspicion for lupus. Both came up ANA positive but my daughter was also positive for RNP. She has a lot of fatigue, body pain, leg weakness/pain and joint pain in addition to a the P symptoms. That said we are stuck in a flare for the past year; she is doing somewhat better but the fatigue seemed to come on with the strep exposure and subsequent P symptoms. Has anyone else here had a lupus diagnosis for their P kids? How does treatment proceed?

Although the symptoms dont all overlap, my daughter had a similar course before/into PANDAS at 3 years of age. My daughter had both psych symptoms as well as pain, fatigue, leg weakness etc and we went through almost a year of testing before she got the first major flare. (In the classic definition of PANDAS is necessary and marks the start of the disorder - but in fact my daughter showed relapsing remitting symptoms for 1.5 years beforehand. BTW, when my daughter had that first major flare she was so violent the doc was not able to swab her throat or take a blood draw, but thankfully my son, who was also sick, tested positive to strep.) We also had to fight with doctors who were loath to test anything given the vague and numerous symptoms, and then afterwards with doctors who do not buy into PANDAS. You will have to drive a diagnosis and treatment through the medical system, both doctors and insurance.

I have not heard of prophylactic coctails. BTW, how were your kids diagnosed? Was the cause of their hypogammaglobulinemia genetic or otherwise? Good luck and enjoy your vacation

I have spent hours and hours on the phone talking with UHC reps. Ive sent many emails, back and forth. And I try to work hand in hand with our PANDAS provider. Each attempt at communicating with UHC reveals something new. A new story, a new claim, a new code. They are extremely disorganized, or at least appear to be. They really have no policy at all, other than to minimize what they cover.

Thanks for the information, I look forward to reading. I do agree, perhaps without sufficient evidence, but then its clear that something has changed in the last 30 years with rising autism and now PANDAS rates. BTW, it may be difficult to truly get herbicide free. Witness glyphosates found in organic wine (

Nancy what are these brain zaps you refer to? We did Risperdal for 2 months or so. It seemed to provide relief from aggressive and violent rages, which are extremely difficult to manage. Interestingly enough, they did better off Risperdal than on it when we went to withdraw. I hope you can manage the next 7 months, that sounds miserable. Hang in there.

Ibuprofen works so well for my kids. We did solumedrol a month back and noticed an immediate change but then realized the nurse dosed them up with ibuprofen before to get the IV in. Have you tried rhodiola? Another option to consider is if your recent uptick in symptoms are allergy driven. Hang in there and hope you start feeling better soon.

I am not in your area but discovered it is super difficult to get PANDAS parents to meet up. Good luck and hope you find some support.

Do you notice tics get worse with all people? If his tics immediately increase with other people that may be stress. PANDAS children likely will have increased social anxiety which can bring on tics. Mine certainly do, in fact during a flare any activity outside the house or their comfort zone can be anxiety producing, particularly when my sons tic is copralalia. We have also noticed that if we spend time with particular children our kids will show a marked increase in multiple PANDAS symptoms. In fact that can send them on a downward spiral. The social implications are quite sad. I do not understand the science behind this as they show no signs of infection. The notion is that the immune system starts ramping up production of antibodies but it makes no sense without an infection.

Goodness...thank you!

Somehow I missed the "2 weeks" part of your first post. We were told that we would experience a bump in symptoms at the 2 week mark and sure enough we did. We tried to keep the kids away from people for 4 months, but they got coxsackie from their grandparents about 2 months in and flared miserably for a month. We went about 5 months my daughter was exposed to strep on her soccer team and that started the decline again. Looking back I wish we would have kept them out for longer in hopes their immune system would calm back down. When their immune system is dysfunctional each exposure ramps up symptoms. BTW, we are in similar straights. All tests say now Lyme and co-infections.

Interesting. I think it was LLM who reported that her child did worse after IVIG due to a herx from Lyme. Have you tested?

We are all there. Isolated, frustrated, abandoned, whatever. A lot of the misery is from kids who are just sick but attack us parents verbally and physically, refuse to cooperate with about anything and instead try to order us parents around. Abuse from kids, abuse from doctors, abuse from insurance companies, etc. About the only two places I feel welcome are Dr L's and their psych doc. lll bite. Here is my stream of consciousness rant. I have really struggled with the isolation and sense that life is passing us and our kids by. Other people are moving along with financial plans - their stock portfolios, their 401ks, 529s while all of our money goes to medical treatment. We see people taking vacations, we can hardly leave the house without anxiety. The parents are involved in activities outside the home, moms exercise or get to meet up and talk, dads get to go out and hunt and fish; we, if fortunate enough to get the kids asleep, sit in silence and browse around on the ipad. We watch their kids excelling in school, sports, arts, music; we call a few minutes of surreptitious home school a success. Well they do play piano well enough. Families at church talk so much about instilling morals and values in the kids; ours have no respect for parents, talk about cutting heads off and weird proto-sexual notions that bounce around in their head. If I get on facebook everyone has these super cute pictures of their beautiful kids; ours are posing obscenely; my daughters hair is a frizzy mess because she cant bear to comb it; both kids teeth are yellow because they refuse to brush their teeth;yet I am just happy they are wearing any clothes at all;. I was reading to my kids a while back from the Little House series. When I was a kid I took away the adventure they lived and the awe of moving to wild and fresh places before civilization came. Nowadays I appreciate those books because I see the adversity they endured and overcame. This was old school, they were supposed to grin and bear even starvation. I have taken in a lot of lessons. IOne of my favorite quotes is from Ma "The sooner you accept that life is hard the more you can appreciate the good things in life". Appreciation of the simple things shines through those books, whether it was joy for a single piece of Christmas candy or over the joy her family brought her. PANDAS is transforming me as a person. I no longer get spend time fawning over little things, like houses, clothes, new cars. Some of that is not by choice, some of it is. I fought it at first but now have moved into acceptance, and with it realization that my values were being changed in this awful mess. I saw this very same change occur with my sister who has two PANDAS kids. I did not get it at the time, but I do now. So many things she valued and sought to instill in her kids were stripped from her - love, education, achievement, culture, art, world travel. She went from plotting out educational experiences and inspiring vacations to plotting out doctors visits and churning through endless rounds of psych meds and alternative treatments. She fought so hard for her kids and had to focus on friends and care. She is recovering some of her life now that her two sons are older (and dysfunctionally stuck at home sadly). But she is also able to enjoy seeing her youngest son thrive in college and a engage in a rich social life.

I assume you are taking abx before and after. Also if at all possible please make sure the tonsils are cultured as that can be helpful with selecting the correct antibiotic.

Sorry to hear this. I have nothing constructive to add except to state that my kids are in that very same boat. I know what its like, seeing how each exposure (and no signs of infection) progressively sets them back in a cumulative sense. The only unturned stone so far is mold but we are moving a week. Have you given your kids time to heal before sending them back into the real world? I understand that repeated HD IVIG will depress Iggs, and we have observed that for both kids. Have you tested for that? One more point - have you done strep carrier testing for your family and pets?

Do tics run in your family? We used to ignore early symptoms of PANDAS. They seemed initially manageable for both parent and child. A little anxiety, some ADHD and tics. We could get by. But then the kids seem to spiral down with each exposure, becoming progressively difficult to manage with high levels of ADHD, ODD, OCD etc. By that point the kids are discouraged and we parents are exhausted and not the best of care takers for our kids. The flip side of that is many kids will experience small flares from an exposure or allergies that subside after some period of time.

Some antibiotics also have anti-inflammatory and immune modulating properties. For example the macrolides (e.g Azithromycin) are good. Another different example is augmentin which contains the an anti-inflammatory, clavulanic acid . Pubmed has a lot of good specifics on these meds.

Thanks all for the words and encouragement. We have found it difficult to think clearly in the midst of the chaos. There was a point I felt that we as parents were handling this well, but I think that time has worn us down and we aren't nearly as patient and hopeful. I know the kids see that. The ODD in particular has eaten us up. We have tested for viruses, mycoplasma etc. Mycoplasma did come up slightly over the limit in my daughter. We tried acyclovir last year after the kids got coxsackie after their IVIG; it did not seem to change. Is there a test for staph? @llm We did not do mold tests but it looks like we are finally moving out of our house in April. Living for short periods outside the house have not changed symptoms. powpow sent a list of tests to do but to date Dr L did not want to do them and our primary doc also did not want to do that. Really...why are docs so resistant to ordering tests?! We were able to get an appointment with a pediatric endocrinologist and are on the hunt for a more open-minded doc. One item that really pops out for me is that my kids cousins on my side have all had PANDAS symptoms (although neither my generation or my parents do). One sister has a son age 24 with autism, another son age 22 who had all the marks of P and is now living at home depressed unable to do school or work, a third who had some P issues but is OK now excelling in college. My other sister has one P kid age 12 who has had OCD, anxiety, but is managing with meds and counseling; she has a second daughter who is doing well. So this seems to imply some genetic root, with an environmental trigger(s). The question is what that trigger is. I think your suggestion for counseling makes sense. As the flare has grinded on they have drifted further from normal life.

I have read a lot on strep testing but cannot find any definitive and comprehensive list of strep swab areas. This applies to both kids with untreated strep and strep carriers. So far we have 1. throat 2. nose 3. perianal 4. any bumps on skin (scrape) Are there any other areas to investigate?

Our kids have been in a long flare that is eating up their lives and ours. We did an IVIG which gave some respite until another strep infection/ exposure. (They showed no signs). We see Dr L who has recommended PEX but UHC had denied coverage - their documentation states it is unproven. Has anyone had UHC approve PEX? I saw some threads from 5 years+ back but nothing recent. If we do not get that approved is there any other recommendations that may have similar benefit to PEX? We have already paid for 3x IVIG out of pocket and PEX runs about 26,000 per kid. We are at our wits end. The kids are crazy and scared and out of control. They are driving us crazy and we are stressed out beyond belief. We hardly get out of the house, spend our time managing kids, feeding them (thanks seroquel), cleaning up after them and repairing the destruction they are creating. How can insurance do this?

Its consistent with PANDAS and many here will also say Lyme. A lot of the PANDAS kids can hold it together for the outside world and reserve the worst for their family. My kids are currently in that nasty ragey mode. They are defiant, disobedient. They taunt us, talk about how much they hate us parents. They purposefully do wrong things, say mean things, use bad language. When they do not get their way they scream, hit, push, throw tantrums etc. They spend about half their time teaming up against us parents and half fighting each other. Its quite painful to go through this. Outsiders dont see this, except in the worst of flares, in which case they don't even want to leave the house.

Thanks for bringing this topic up. In hindsight both of our kids had the red ring. Combined with our knowledge of PANDAS, it was likely strep. What I found curious was the authors' claim that both throat and anal swabs be done for ALL family members. I have also read that noses should also be swabbed. My kids also have these bumps on their arms that went away on rifampin. And just recently my daughter had a rash around the sides of her mouth that while it dissipated when on amoxicillin. Neither of those areas were swabbed/scraped and cultured though. So...is there any definitive list of areas to culture?

Interesting observation! The description of Uhltoff's phenomenon seems to be due to demyelinated nerves. How does that compare to PANDAS? My kids temperatures appear to drop during a flare. They rarely feel cold, hate to be hot, and generally are miserable and PANDASy when they are. I always chalked that up to them being unable to handle any kind of adversity but perhaps there is more to this.

Very sad, but well put. It would be a good read for the naysayers if they would only read. I have I have nothing to add except that we are in similar straights. The kids are still mired in flares, exhausted, stressed out and watching all of our money fly away. Our bodies feel like they are going to break, we hardly get any time to care for ourselves. Our marriage is stressed but OK, but then we don't do anything normal couples do. We are isolated. The people that should be there for us - doctors, insurers, family, friends, church - are absent. They just bring the added burden of trying to "get them on board". There are so many that offer authoritative plans without following through - but are always looking for money.

Didnt you just complete an IVIG last year? Are you at the four month mark yet? We are also considering seeing a Lyme doc despite negative Igenex test for both children. We have an appointment with Jemsek in DC next month. Mold also may be an issue - since moving to the house we are now renting flares have been continuous. We keep saying we are going to move out soon but with the kids anxiety and fear (which manifests in increased copralalia, tics, anger, breakdowns etc) its hard to get out of the house to look for homes.