EAMom

Hi beerae22, Sorry I didn't post sooner...I've been sick with a fever all week (still have a bad cough and am still woozy). So your dd is 8? My dd was 7.5 when PANDAS anorexia struck. (I skimmed the thread, sorry if questions already answered). Questions: 1) have they done throat cultures (on family members too)? I know blood work was mentioned. Our non-pandas dd was a asymptomatic strep carrier (throat swab positive, no symptoms) and clearing sister was really important in getting PANDAS dd better. Get current throat cultures on all family members. 2) did they submit blood work for the Cunningham Test? http://www.moleculera.com/ -->positive results would cement diagnosis and may help in getting IVIG. I have heard insurance is covering this test for some kids? 3) what antibiotic and what dose (and how often) is she on? Is this the only ab she's tried? While our dd has some improvement on Augmentin, her eating didn't really turn around until we "discovered Azithromycin" (also ibuprofen). Mood improvement (she was yelling at us a bit less) took about 1 week, she started eating after 2 weeks once we started Azith (250 mg/day for a 43 pounder). Azith was the 4th antibiotic we tried (Amoxicillin did nothing). She might have also had mycoplasma (who knows?) as nobody was testing for mycoplasma in 2008. She definitely had strep (culture positive). BTW, Azith doesn't work for everyone, but don't be afraid to try a stronger ab if the first isn't working, also having a high enough dose matters. 4) how much did she weigh? How much weight has she lost? If she's lost more than 15% (or so) of her body weight, certain brain changes can take place (distorted body image will kick in) so refeeding is very important (as t_mom alluded to). This happened to my dd, she initially had a fear of sugar and weighing more than 50 pounds. Then very quickly, she stopped eating and once she dropped weight then she had the freaky distorted body image (would look in the mirror and think she was fat even though she was bones). She had dropped from the 25th percentile (her norm growing up) for weight to completely off the charts. (Her height was 50th percentile). My dd was hosp. for 6 days (a parent was with her the entire time) to start her refeeding. Note: it's important that she not be separated from parents, separation anxiety can be high in these kids. note: my dd didn't have the fear of choking...but that is actually more common in PANDAS kids than my dd's symptoms (fear of sugar, fear of weight gain). 5) sorry if I missed it...was an infectious trigger ever identified? Did they test for viruses? Sometimes anti-virals help PANDAS kids. 6) what were her other symptoms? 7) are you giving ibuprofen?

Yes, this is the exact same group as the 2008 Pediatrics article, where the purported PANDAS kids didn't actually have PANDAS, and one of the lead author's (Leckman) even admitted this to the Boston Globe. Singer/Kurlan have used data from this non-pandas group in MULITPLE papers with the aim of refuting PANDAS. "Serum samples were available from 44 subjects with the diagnosis of PANDAS. Individuals were participants in a longitudinal Tourette Syndrome Study Group multicenter study of streptococcal infection and exacerbations in children with tics and obsessive–compulsive symptoms (Kurlan et al., 2008)." Also, the labs were NOT run by Cunningham: "Methodology is a modification of Lopez and Schnaar (2006).Assays wereperformedinsterile96-wellmicrotiterELISAplatestowhich50μl of antigen (10μg/ml; N-acetyl-D-glucosamine conjugated to bovine serum albumin (BSA), GlcNAc, Dextra Laboratories; purified bovine brain tubulin, MP Biomedicals; or human dopamine D2 receptor, PerkinElmer) were incubated overnight at 4 °C, then washed with 0.1% Tween in phosphate buffered saline (PBS). Plates were blocked with 1% BSA, washed, and incubated with serum diluted 1:500 in PBS with BSA. After washing, plates were incubated with secondary anti- bodydiluted1:1000in1%BSA,washedagain,anddevelopedwithpnitrophenylphosphate (Sigma). Optical density values were measured at 405 nm on an automated Bio-rad (Hercules, CA) Model 680 Microplate Reader and corrected by blanks (antigen without serum). Assays were performed in duplicate. All assays were performed in the laboratory of Dr. Harvey Singer at the Johns Hopkins Hospital." This paper is a bunch of garbage and I suspect even Harvey Singer knows that.

I haven't read all the comments but do check for Lyme before doing PEX. If your child has Lyme, PEX can make things worse!

I wonder what lab ran the samples?? I don't think it's Dr. Cunningham's b/c she would have also tested for anti-lysoganglioside and anti-D1. This is what Singer tested for "N-acetyl-beta-d-glucosamine, tubulin, and the dopamine 2 receptor." I also think if it was Cunningham's lab there would have been something in there about Cam kinase ll? I also think he's using the same sample of kids (pulled from the Tourette Study group) from the 2008 Pediatrics article. He had 40 (or 44?) PANDAS kids for that one too. And it was longitudinal. I'm guessing he took a bunch of blood samples from this group of kids and got multiple "PANDAS" studies out of them.

Hi Thirteen, in the future you should post under PANS/PANDAS (Lyme) as more people will notice your post that way. (The copy function on my computer isn't working right, but I will try to post more info. later. )

Cara615- Yup, I would definitely watch out for the other twin. There is a high sibling rate in PANDAS. I think it's possible his milder symptoms are early or low grade PANDAS/PANS. Throat cultures (yup, there is a lot of stealth strep w/out typical symptoms) and other monitoring for infections is important. Are they identical twins? I should add that even if your other son doesn't have PANDAS, it is important to make sure he is clear of infections (ie make sure he isn't a strep carrier--do the throat culture) since PANDAS kids will react to illnesses and strep in other members of the household.

There is a PANDAS parent blog called "PANS Life" with a good summary of some of the presentations. It is called "The Conference: part 1" so I assume there is more to come! http://www.panslife.com/pans-life-journey/2013/11/14/the-conference-part-1.html

Also bear in mind that if you check titers "too early" or "too late" then you may miss the elevation of a past or current strep infection. Ideally you should check titers at onset of symptoms (to get a baseline) and again 4-6 weeks later to see if there is a RISE in titers. A single elevated titer doesn't tell you if that infection is current or was from a year ago (since in some people, titers can stay up for quite a while). If you drew titers after 1-2 weeks of symptoms, that may have been too early for the body to respond with a rise, so I would recheck in 1 mo. Also some kids have a very low baseline, so even if they do get a titer rise, it doesn't exceed the upper limit of normal. So, it looks "normal" when in reality it is elevated for that particular child.

Has she lost a significant amount of weight? How old is she? I would throat culture family members to make sure you don't have strep in the household. BTW SSRI's may cause decreased growth...no studies (surprise!) were done after this one. http://www.ncbi.nlm.nih.gov/pubmed/12090838

Also, don't confuse Dr. Margo Thienemann (pediatric psych. in No. CA) with Dr. Trifiletti (pediatric neurologist in NJ). Usually when people say Dr. T. they mean Dr. Trifiletti. Usually I refer to Dr. Thienemann as "Margo T." (easier to spell for one thing).

BTW....you can get the throat cultures right away, while you are waiting to see specialists etc. That is something your family doctor can do.

HI MissionMama, I haven't read all the responses carefully. But.... #1 did you get a throat culture on your child? Did you also throat culture family members? My PANDAS dd never got elevated strep titers but both she and her sister were positive on throat cultures. If your child (ren) are positive (or you are, or dh) you need to know and need to clear them (with antibiotics). There is a lot of "stealth" strep around which doesn't have typical symptoms (sore throat, fever). Check out this thread http://www.latitudes.org/forums/index.php?showtopic=16476 ASO titers are a pretty inexact way of telling if and when somebody had strep, however, since you already had ASO titers (did you do anti-dnse b titers too?) you should repeat titers in about 4-6 weeks to see if there is a RISE in titers. That said, strep isn't the only infection that can trigger sudden onset OCD. Mycoplasma and Lyme are others. As far as No. CA docs. Here is a list of doctors that could be helpful. http://pandasnetwork.org/resources/providers/provider-list/ I would probably recommend Dr. Schweig over Margo T. Margo is great but being a psych, she would have to refer you to Stanford (PANS clinic which doesn't take out of state and has a long wait list) to get labs and check for infection etc. Dr. Schweig can get you in sooner and will do all the testing (and more) that Stanford would do. I think Dr. K is too far to go from the West Coast and personally, think Dr. Schweig will do a better job of looking for underlying issues aside from just strep. BTW, strep is not a virus. It is a bacteria (which needs antibiotics). I just wanted to clarify since you will be probably be dealing with many doctors in your quest for treatment and it's good get that straight if you want a better chance of being taken seriously! (Note: viruses can trigger exacerbations in PANDAS kids, esp once the "wheels" of autoimmunity have already started with a prior strep infection. Some of the "better" PANDAS docs will know to check for certain viral titers as well .Some of these kids with evidence of viruses on blood work have been successfully treated with anti-virals. For my dd, H1N1 and fifth's both triggered subsequent exacerbations a couple of years after PANDAS became full blown with strep.)

Wow! Hopefully you saved samples of her writing. I would be interested to know what a good PANDAS doc thinks of this. With the cough, I wonder about Mycoplasma. Can you get blood work done for that? Did any other symptoms show up? It also wouldn't hurt to get a throat culture and baseline titers in case this is a situation of stealth strep. (Although the antibiotics could definitely cause a false neg on the culture.)

Hi, I haven't read all the responses...by definition, a child needs OCD or tics for PANDAS, but in reality, I think that is a somewhat arbitrary delineation. My dd's first PANDAS symptoms were rages/tantrums, "difficult behavior", bossiness, emotional lability...only as things progressed did we actually see that there was OCD. Also, I think the ADHD is a big red flag...the fear of wolves and handwriting issues are also suspicious. And, many kids keep their OCD (if they have it) "hidden" or it isn't obvious to the parent...it may not present as the typical "handwashing" that we think of when one says OCD. In fact, my dd went for 3 weeks (this was a long time ago) where she refused to wash her hands! You could try dosing him with Advil 3x daily for a few days and see if you notice a difference in behavior (advil helps some PANDAS kids). I would also STRONGLY recommend (since it's been about a week since you finished antibiotics) that you throat culture your son to make sure the strep actually cleared with the Cephalexin. Also, throat culture family members to make sure there isn't "stealth" or "asymptomatic" strep in the household that could be serving a source of reinfection or even just stimulating his immune system. (PANDAS kids can react to strep in others, even if they are on antibiotics). This is something that you can do while waiting to see a specialist...also your kid is positive you have a good reason to try a stronger antibiotic.

Here's a life extension article on Progesterone. http://www.lef.org/magazine/mag2006/apr2006_report_progesterone_01.htm

Well...I certainly hope this comes out in the paper...that these low doses of prophylactic antibiotics don't prevent strep in these PANDAS kids! IMHO a 77 pounder (unless very PANDAS-wise stable for a few years) should get at least 250mg/day Azith...even 500mg/day should be considered if symptoms are severe.. I also hope they realize that it isn't necessarily that Azith doesn't work (although that may be the case in the East Coast where there are resistant strains) but that LOW dose Azith doesn't work.

BigMighty...what dose was the NIH using on your son (Azith) when he got strep, and how much did he weigh?

Vision problems and headaches sound like Lyme (or other tick borne infections) to me. What part of NC are you in? Some counties have a lot more Lyme than others. Has any human or pet in the family ever had a known tick bite? http://www.capcvet.org/parasite-prevalence-maps/

Where do you live? Any chance of a tick borne infection lurking? I agree, I am against the dose antibiotics. I think it breeds resistance.

I'm quite sure all 700 weren't tested for Lyme. But that is a great question...how many were even tested for Lyme?

I would ditto the recommendation about seeing a LLMD as a well as a PANDAS specialist. PA is #1 state for Lyme. http://www.lymediseaseassociation.org/index.php/about-lyme/cases-stats-maps-a-graphs/1081-2011-reported-lyme-cases-top-10-states Here is a map with rates of Lyme in dogs (logically, where dogs have Lyme, so do people!). Overall 1/8 dogs in PA test positive for Lyme, and there are "hot spots" such as Armstrong County (63%) or Cambria County (86%), both in Western PA, where it is much higher. http://www.capcvet.org/parasite-prevalence-maps/ You can get Lyme in just 1 tick bite and many bites go unnoticed! And, only 10% of cases will get a rash. http://www.poughkeepsiejournal.com/article/20130629/COLUMNISTS03/306290009/Valley-View-Standard-Lyme-disease-test-misses-bull-s-eye- Lots of PANDAS kids have Lyme as an underlying trigger, with strep or mycoplasma on top... On Amoxicillin...it didn't do much for us. We found Azithromycin (long term) to be much more clinically effective. (We may have had mycoplasma as well, nobody was testing for that in 2008.) It took 5 days of Azith (250mg/day for a 43 pounder) for mood to barely start to improve, 2 weeks for OCD, and 6 weeks for tics. If mycoplasma is involved (that's what the symptoms sound like) then Biaxin may be more effective than Azith. Even if strep if involved at the moment, Amoxcillin isn't terribly effective for PANDAS kids. http://www.urmc.rochester.edu/news/story/index.cfm?id=981 I would also recommend the Cunningham Test, which is an actual "Test for PANDAS". IMHO no child should be diagnosed with Tourettes, bipolar, ODD, ADHD, or OCD w/out running this test to help r/o PANDAS/pans. http://www.moleculera.com/

It looks like you can get 5mg DHEA on Amazon (and those you could break in 1/2 to get 2.5mg). http://www.amazon.com/Douglas-Labs-DHEA-5-MG/dp/B0013I23Q2/ref=sr_1_1?s=hpc&ie=UTF8&qid=1382033522&sr=1-1&keywords=dhea+5mg There is also a cream (bypasses the liver?), but I think it would be hard to measure out small doses with the pump. http://www.amazon.com/Life-Flo-DHEA-Highly-Absorbent-Cream/product-reviews/B00014J4L6/ref=cm_cr_dp_see_all_btm?ie=UTF8&showViewpoints=1&sortBy=bySubmissionDateDescending I'm not sure how much is in each squirt of the pump (15mg??). Any updates on any one using DHEA?

We were worse (turning back the pages etc) for the first week or two...then she gradually got better over the next couple of months (and more).

Here's a good review article on bio identical hormones: http://jeffreydach.com/files/80618-70584/Review_Safety_Efficacy_Bioidentical_Hormones_Management_Menopause_Deborah_Moskowitz.pdf

Here are some old discussions on Quercetin https://www.google.com/search?q=quercetin+acn+forum+pandas+site:www.latitudes.org&biw=1224&bih=779