EAMom

good quote...I wonder what Swedo would say re what is happening when these kids start reacting to other infections (viral, other bacteria)? Is it just that these "other things" (including stress) open up the bbb and allow more molecular mimicry to take place (assuming a certain level of cross reactive antibodies are always present in the blood stream)? Dr. T. doesn't think it is actually molecular mimicry that is going on (b/c so many non-strep things trigger pandas/pans)...but I haven't had time to ponder his theory.

Go with your mommy gut! You know your kid. You know what your kid was like before this started. You've seen him change (with a diagnosed strep infection no less!). You really can't compare that with an hour or two of assessment (no matter how well-intentioned) from any MD. It's not uncommon for parents to need the 2nd or 3rd (or 8th or 18th!) opinion to get their PANDAS kids diagnosed/treated/healed. Based on your son's history/symptoms, I would say the exact same thing...even if you had gotten the "it's TS and not PANDAS" from the OTHER Dr. L (Dr. Latimer). I would say, you are lucky to have an on-the-ball ped! Would she be willing to use something stronger than pen? Here's an article you might want to read and share with your ped. http://www.pediatricnews.com/views/id-consult/blog/amoxicillin-failure-in-strep-throat/bedfe23ae75bfc7dd86f8bc32c438492.html Most PANDAS parents find Augmentin and/or Azith to be most clinically effective. Also, don't forget to take videos of the various tics to show to docs in the future. Will your pedistrician (and/or your own doc) throat culture the rest of the family (to check for carriers)? That is really important. My younger dd was a strep carrier (throat culture positive, no symptoms) and my pandas dd reacted to that. Younger dd cleared on Azith (but not Augmentin). Hugs! You have a lot of other PANDAS moms rooting for you. I would also keep Dr. L. updated, let him know that your son is doing much better now that he is back on abs...maybe he will change his mind given this new info, and it would be an easy way to get cooperation from dh? Also, before you do steroids (or IVIG) get the Cunnigham test (which knock on wood, should be available in 2 mo.) That test is supposed to be good for telling TS vs PANDAS. Perhaps it will help settle any qualms your husband may have about the PANDAS diagnosis?

Yes, we get those mood swings too. I think she remembers them though.

The Vitamin D council has some recommendations on doses. Here's a link http://www.vitamindcouncil.org/about-vitamin-d/how-to-get-your-vitamin-d/vitamin-d-supplementation/ Based on the body's indicated daily vitamin D usage, Vitamin D Council recommends the following amounts of supplemental vitamin D3 per day in the absence of proper sun exposure. Due to the variable response discussed above, these are only estimated amounts. •Healthy children under the age of 1 years – 1,000 IU. •Healthy children over the age of 1 years – 1,000 IU per every 25 lbs of body weight. •Healthy adults and adolescents – at least 5,000 IU. •Pregnant and lactating mothers - at least 6,000 IU. Additionally, children and adults with chronic health conditions such as autism, MS, cancer, heart disease, or obesity may need as much as double these amounts. also... At the IOCDF conf. in Chicago, Dr. Murphy mentioned D (with respect to PANDAS). She said: "Vitamin D is immune modulating and anti-microbial. 50 is an ideal level." Btw, I also have in my notes the words "Swedish D study"...I don't know what she meant but I googled and found this: http://www.vitamindcouncil.org/news-archive/2010/update-on-autism-and-vitamin-d/ At the same time, some researchers in the USA continue to deride my theory while scientists in Sweden are starting to piece it together. Three Swedish papers were published this month that support the Vitamin D Theory of Autism. It makes sense that low D could be a piece in the rise of autism puzzle. 1-2 generations ago, people probably spent more time outside, and were not quite so fanatic about sunscreen.

OH...maybe she could qualify for the NIMH IVIG study? they still need kids.

This is on IOCDF's FB page (along with a picture of certain PANDAS folk: eg Swedo, Murphy, Jenike, Sue Dailey...in front of Rogers): "Last week, members of the IOCDF Scientific and Clinical Advisory Board and staff from the IOCDF met with Rogers Memorial Hospital to discuss the latest information about PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome). This meeting was part of the IOCDF's overall efforts to promote the mental health and wellbeing of kids and teens visit www.ocdinkids.org "

My understanding is that the IOCDF is working to encourage Rogers to treat PANS/PANDAS medically. So, hopefully things will change... It does bum me out that parents have to choose between the safety/security of a residential treatment program and treating PANDAS medically. They should be able to have both!

Here's a list (from a prostate website!) on antibiotics with anti-inflammatory properties. http://www.chronicprostatitis.com/abx.html