EAMom

Hang in there!! Hopefully things will get better in 2-6 weeks.

Here's PANDAS network's list. It's in 2 sections, 1 short section of "leading physicians" and another where you can click on each state. There are 2 "leading physicians" listed in Texas (Dr. Rao and Dr. Russell). http://pandasnetwork.org/resources-new-research/providers/ I would also be a little cautious about Beth Maloney's list (Saving Sammy) as I have heard of parents having problems with a few of the docs. They aren't as well screened as the PANDAS network list.

1) yes symptoms may return after 30 days 2) where do you live?--depends more on the individual doc. My dd's main PANDAS doc is her psychiatrist. However, other top PANDAS docs are immunologists, neurologists, rheumatologists, integretative docs, even peds... But, be careful of neurologists in general, many of them are big PANDAS naysayers. PS...I now see you are in Texas. Lots of PANDAS folk in Texas see Dr. Rao. Here's a link: http://www.latitudes.org/forums/index.php?showtopic=18094 You can also google "Dr. Rao PANDAS" Also, contact the support groups in Texas, they may have more info on docs http://pandasnetwork.org/resources-new-research/support-groups/

Give your ped this handout http://www.ocfoundation.org/PANDAS/ (I copied a bit of the article, and added the bold): Use antibiotics for 3-6 weeks initially. Use of augmentin has anecdotally been found to be more effective at a relatively high dose as well as the cephalosporins (cephalexin, cefdinir) and azithromycin. Consider using probiotics but not at same time of the day; allow 2-3 hour window between. If no improvement is seen after 3-4 weeks, a physician may consider an alternate class of antibiotic treatment. If symptoms completely remit, a trial off the antibiotic may be attempted. If symptoms return, additional treatment may be warranted. In the meantime, get family members throat cultured to make sure you don't a have a strep carrier in the household. Also, I believe for the trial, you need evidence of strep (not just any resp. illness)??? but worth a call (and cultures of family members)! Strep in a sibling "counts" for the trial.

What antibiotic and dose are they using?

Hi, yay on getting into the study! This is what we experienced with IVIG: 1) headache, some fever first 2-3 days after IVIG 2) "it gets worse before it gets better" increased PANDAS symptoms, irritability, some new symptoms (for example my dd had "altered taste sensation" for a short time post ivig)...things are rough for the first 2 weeks post-IVIG, then things slowly get better I hope that helps. Maybe keep a notebook with symptoms and observations for the next several weeks (do they have you do that anyway?). Are you giving anything like advil? benedryl? tylenol? while these are sometimes given to kids post IVIG.

Oh okay. Do you remember how low your son's Vit D level was?

My DD10 has buds on her chest enlarging now. What is that a symptom of? Pubic hair, growing breasts and even starting menstrual cycles around the age of 11 is no longer uncommon. 11 isn't really all that early. Puberty has always had some type of a range. I think average age of Menses is 12.5 now, and that means "changes" (breast bud etc) would start a couple of years before that (so age 10.5 would be completely normal). And, everyone is different, some kids earlier, some later. IN the 19th century, average age of puberty was 15 (according to the internet)...but who's to say if the change is from bad stuff (chemicals, endocrine disrupters) or better access to food/nutrition. Interestingly, in the 17th and 18th century, people were also much SHORTER. According to once source, average height for a woman was 5 feet 1/2 inch. Most places attribute the eventual increase in height in people (over the centuries) to better nutrition.

50,000 IU a week? or a day?

My DD10 has buds on her chest enlarging now. What is that a symptom of? Puberty!!! That's normal! But it certainly makes sense that the hormones associated with puberty could cause changes in the immune system, such that it might cause lyme/bartnella to come out of an inactive/dormant phase. ??? wild theory

Agreed! I think there is a lot more not-sudden-onset PANDAS/Pitands than people realize. Low grade symtpoms start when they are toddlers, so easily written off as a phase or quirkiness....then symtpoms slowly ramp up and become more chronic.

Wondering if there is a lot of undiagnosed Lyme/coinfections in your community contributing to this? Your dd's class is very small btw.

I think this dose if fine, since your sone is adult sized. The adult dose of Augmentin XR is 2000mg 2x daily (so 4000mg/day). AUGMENTIN XR should be taken at the start of a meal to enhance the absorption of amoxicillin and to minimize the potential for gastrointestinal intolerance. Absorption of the amoxicillin component is decreased when AUGMENTIN XR is taken on an empty stomach (see CLINICAL PHARMACOLOGY). The recommended dose of AUGMENTIN XR is 4,000 mg/250 mg daily according to the following table: http://www.drugs.com/dosage/augmentin-xr.html

My dd took 1000mg 2x daily (so 2000mg/day) of Augmentin XR for 1 mo. (took a break from Azith 250mg/day Azith to see if Augmentin would work better). This was in the 5th grade. She was about 70-80 pounds at that point. ALso, Saving Sammy took 1000mg 2x daily of XR...he was 11 at the time he started, took it for a few years.

Here's an aricle on a vitamin D study: http://articles.mercola.com/sites/articles/archive/2011/12/14/study-shows-vitamin-d-cuts-flu-by-nearly-50.aspx According to the findings from a 2010 study that didn't get any widespread attention, vitamin D is a highly effective way to avoid influenza. In fact, children taking low doses of Vitamin D3 were shown to be 42 percent less likely to come down with the flu. The randomized, double blind, placebo-controlled study included 430 children aged 6-15, who were followed between December 2008 and March 2009. Half were given 1,200 IU's of vitamin D3 daily, while the other half received a placebo. Influenza strains were determined through lab testing of nose and throat swabs. Eighteen of the children taking vitamin D contracted influenza Type A, compared to 31 children in the placebo group. Type B influenza rates were unaffected by vitamin D use, however, the illness resulting from Type B influenza strains is typically milder than Type A. Considering the fact that influenza was reduced by 42 percent at a dose of just 1,200 IU's a day, it's possible that even better results might be obtained with higher dosages—depending on just how deficient you are to begin with, of course, because it's not really the dosage that matters; it's the amount of vitamin D in your blood. It's Not the Dosage that Matters—It's the Serum Level Some 40 leading vitamin D experts from around the world currently agree that the most important factor when it comes to vitamin D is your serum level. So you really should be taking whatever dosage required to obtain a therapeutic level of vitamin D in your blood

I suspect that your dd's results are right. My understanding is that high D1 was seen on PANDAS kids (Cunnigham) and was associated with OCD. High anti-lysogangliosides were associated with pandas tics (don't quote me though). Don't know how immune def would affect results--way over my head, but good question! Just to keep everyone on their toes DS; cam 160 only D1 elvated 4000..range 500-2000 TICCER...all day all night...i guess some of the tics could be compulsios..but idk.. only ocd that i have finally put a finger on is Triatellanmia..at the start of each allergy season, Starting in february for about a month and then again about august.. Love to hear thoughts on this was anything else elevated? what was anti-lysoganglioside?

It looks like the law changes in 2014 "Alert: California Vaccine Exemptions California AB2109 has been signed into law and takes effect January 1, 2014. At that time, parents must pay for a Dr. Appointment to TRY to Obtain a Personal Belief Exemption" http://vaccinetruth.net/exempt/california.htm

Hmmm...so maybe these kids in Dale's paper that have "basal ganglia encephalitis" actually have PANDAS with Lyme? My dd had a MRI a few years back. No lesions were mentioned. It was normal.

I suspect that your dd's results are right. My understanding is that high D1 was seen on PANDAS kids (Cunnigham) and was associated with OCD. High anti-lysogangliosides were associated with pandas tics (don't quote me though). Don't know how immune def would affect results--way over my head, but good question!

Yes...I wondered about Dr. Murphy being on the paper too. And you wonder if (like Singer) if they even had "real" PANDAS kids, or pseudo-PANDAS kids (who actually had TS, like the ones Singer used). I suspect however, it is something to do with Dale not knowing how to grow stuff in the petri dishes, or having bad cell lines, or something, that is causing his neg results (anti-D1 esp.)

New illness...or perhaps a new strep carrier in the household? Get throat swabs on all family members. I would also go for doing the azith daily (for at least a mo) to see if that helps. How many mg is he taking?

oh my! have you checked his vitamin D level? But, yay for going outside today.

I think Dale and co. have wonky petri dishes... according to the Cunningham Testing, my PANDAS dd had very elevated (16,000 H, controls 500-2000) anti-D1 antibodies (associated with OCD?). Her anti-D2 was at the high end of normal 16.000 (normal is 2000-16,0000). "Elevated dopamine-2 receptor immunoglobulin G was also found in 10/30 patients with Sydenham’s chorea, 0/22 patients with paediatric autoimmune neuropsychiatric disorders associated with streptococcal infection and 4/44 patients with Tourette’s syndrome. No dopamine-1 receptor immunoglobulin G was detected in any disease or control groups. We conclude that assessment of dopamine-2 receptor antibodies can help define autoimmune movement and psychiatric disorders. "

YIKES!!!!!!!!!!!!!!!!! Yes...obviously that is Harvey Singer, the neurologist who runs "PANDAS studies" on kids that actually have garden variety Tourettes. This is from Swidey's Boston Globe article http://www.latitudes.org/forums/index.php?showtopic=18829&st=0: Yet Leckman tells me that in late 2008, well after all the patients had been enrolled in the study, he came to an astonishing realization: He and his coauthors had been studying the wrong children. Most of the kids in the study resembled those he regularly sees in his clinic — children with “garden-variety” Tourette’s and OCD. But after working with more physicians treating PANDAS patients, he had come to see firsthand that there was a distinct group of kids who literally had changed overnight, with dramatic onslaughts of OCD and other symptoms. And these “true” PANDAS/PANS cases weren’t represented in his study in any meaningful way. Leckman says he lobbied his coauthors, who included Harvey Singer, to admit to this failing in their paper. But they refused, insisting they had followed the published PANDAS criteria in selecting their subjects. Leckman had to concede they were right — the children all met the criteria Swedo’s team had established. It’s just that he now believed those criteria were far too broad. So Leckman’s name was listed first on an influential paper that he felt was technically accurate but missed the larger point. Nonetheless, Leckman had already become a changed man. Shortly after his epiphany, he says, “I picked up the phone and called Sue Swedo and told her that I had become a convert.”

okay, this is concerning that the speakers are not PANDAS/PANS experts, rather naysayers or docs with little clinical experience with PANDAS. Why can IOCDF get Cunnigham, Swedo, Latimer, Jenike, and Murphy to speak at one conference, and all these guys can get as speakers are some docs I've never heard of. Wouldn't it be more reasonable to get 'experts' in OCD/PANDAS rather than Dure/Hill???