mkur

Thanks for posting. I wish to thank the NIH and all the children who participated in the study and their parents. Wish we could have been a part of the first study. Thank you all from the bottom of my heart. Finally some answers. I'm definitely smiling between all the tears.

Congrads Grandma. He sure is lucky to have a wise pandas mom as his advocate.

Read this: Biomarkers for Autism Discovered http://www.sciencedaily.com/releases/2012/03/120323134529.htm and looked up the original article: Citation: Translational Psychiatry (2012) 2, e91; doi:10.1038/tp.2012.19 Published online 13 March 2012 A novel blood-based biomarker for detection of autism spectrum disorders http://www.nature.com/tp/journal/v2/n3/full/tp201219a.html and which led me to this: http://en.wikipedia.org/wiki/Complement_component_3 and then this: http://en.wikipedia.org/wiki/Factor_H which contained these stmts: "Recruitment by pathogens Given the central role of factor H in protecting cells from complement, it is not surprising that several important human pathogens have evolved mechanisms for recruiting factor H. This recruitment of factor H by pathogens provides significant resistance to complement attack, and therefore increased virulence. Pathogens that have been shown to recruit factor H include: Aspergillus spp.; Borrelia burgdorferi; B. duttonii; B. recurrentis; Candida albicans; Francisella tularensis; Haemophilus influenzae; Neisseria meningitidis; and Streptococcus pyogenes." So maybe the scientists are going to figure this out soon. I hope.....

RUN - don't waste your time and money with the non-believers.

Medical term is mydriasis. It is a neuro response. http://en.wikipedia.org/wiki/Mydriasis

This was on 20/20. It is free computer tutoring for math etc. Gates is funding it and recommends it. I remember some mom's were searching for ideas and this might help. http://www.cbsnews.com/8301-504803_162-57394688-10391709/brain-science-101-with-sanjay-and-sal-khan/?tag=cbsnewsMainColumnArea.1 edit: http://en.wikipedia.org/wiki/Khan_academy

Thanks for the warning. I looked up binge eating and he doesn't fit. He doesn't overeat but is always snacking. When he was younger, he would beg food from his friend's parents etc. He notices the food that he eats and is still moderately picky. Now that he is older and not as hyper this could be problem. Does anyone know of the vitamin deficiency etc that can cause this? Does anyone know of a natural herb or OTC supplement that can help? Thanks again.

Glad you found help and have a plan. It really helps with the stress level. Wishing you a speedy recovery.

bump This is a must see. Those poor doctors and patients. What a mess...

Ms American has started a foundation about eating disorders at kirstenhaglund.com. I think some of you pandas' moms with children who present with eating disorders should contact her and let her know that some of these kids can be treated and the younger the child the more likely it is pans related. My child has the opposite problem - he will crave food - is always hungry. He was very very lucky to have a fast metabolism.

My son has a "delayed" fever response. His first signs to strep are - vomiting (looks like stomach flu), swollen gland behind ear, sore throat, looks sick (very pale with dark circles under his eyes) and acts sick (very tired - very quiet - not moving - says he hurts but not sure where). He will run a fever after a couple of days. He had scarlet fever when he was four. When he was five and before pandas hit at seven, the ped would get mad at me when I would request strep tests - would lecture me about unnecessary tests etc. My son has always had a problem with strep and sinuses. I didn't find out about pandas until he was eight - 1 yr after pandas hit him in 1997. Also my ds does get high titers (500-990). I've never seen them normal but we don't test regularly. He fits the pandas dx perfectly - sudden onset, etc. So what does that make him?

You're the second person to mentioned smelling for strep. My SIL does this too. I wonder why there is no "smell" test on the market. It would be more accurate because you wouldn't have to touch the strep directly. If it was hiding in a pocket it could be detected.

I've read somewhere that strep can hide in your sinuses and a lot of these kids have sinus problems - mine does. Dr b recommended using nasal spray - saline only. I would definitely rinse out his nasal passages especially while he is on an abx.

Looks interesting and will check this out. Thanks. There are some glutamate articles on nih about the relationship between glutamate and dopamine. In case you missed it and have some extra time.

Saw this on tv the other day: montel talking about ms and his dietary plan to boost his health http://www.doctoroz.com/videos/montel-williams-daily-energy-boost-plan?page=3#copy "Evening: Garlic Infusion Montel consumes 5 cloves of garlic a day. He claims it’s the reason he has not had a cold in the last 4 years. This could be the result of allicin, the active compound in garlic, to which the antimicrobial and antioxidant effects of garlic can be attributed. Allicin is released when garlic is chopped, crushed or chewed. Allicin is also a known cancer fighter. To maximize your benefit, wait about 10 minutes before cooking garlic to allow the allicin to form. Montel adds minced garlic to chicken soup, but you can add it to any meal. " Nancy - thanks for posting - makes you wonder if the Italians have lower MS rates and if the American Italians have higher rates due to dietary changes? also what is the average amt of garlic consumed by Italians or others etc.

We were burned by the media when I tried to help spread the word about pandas approx 7 years ago. I know how hurtful things can get. So sorry. I hope all the girls recover. I also hope that each will receive an answer on the cause. Good luck.

Have a safe trip. We would leave early in the morning and put the boys in the car in their pjs. I would try to drive until we need gas (5-6 hrs) and then stop for brunch. Usually my boys will sleep the whole time. The afternoons get a little rough. Hope everything works out.

More evidence for pandas? http://children.webmd.com/news/20120302/kids-snoring-linked-behavioral-problems http://www.reuters.com/article/2012/03/06/us-snoring-tied-kids-idUSTRE8251KG20120306 and the abstract of the article they refer to http://pediatrics.aappublications.org/content/early/2012/02/29/peds.2011-1402

I use the band-aid analogy all the time. I have a lot of negative feelings for neuros and peds. They kept referring us to the psy for treatment (band-aids - meds). My son got sick and no one can give me an answer. I want to know what went wrong and why. I have a younger son and I keep waiting for the bomb to hit him. I feel your pain - so sorry. I'm glad you kept looking and found a new dr who is willing to help. Pat yourself on the back and give yourself a hug. Hope your week gets better.

FEMS Immunol Med Microbiol. 2009 Apr;55(3):422-31. Epub 2009 Feb 19. The early interferon response of nasal-associated lymphoid tissue to Streptococcus pyogenes infection. Hyland KA, Brennan R, Olmsted SB, Rojas E, Murphy E, Wang B, Cleary PP. Source Department of Microbiology, University of Minnesota, Minneapolis, MN 55413, USA. hyla0021@umn.edu Abstract Streptococcus pyogenes is a major causative agent of tonsillitis or pharyngitis in children. Streptococcus pyogenes can persist in tonsils, and one-third of children treated with antibiotics continue to shed streptococci and have recurrent infections. Mouse nasal-associated lymphoid tissue (NALT) is functionally analogous to human oropharyngeal lymphoid tissues, and serves as a model for characterization of the mucosal innate immune response to S. pyogenes. Wild-type S. pyogenes induces transcription of both type I and interferon-gamma (IFN-gamma)-responsive genes, proinflammatory genes and acute-phase response proteins 24 h after intranasal infection. Invasion of NALT and the induction of the interferon response were not dependent on expression of antiphagocytic M protein. Intranasal infection induces a substantial influx of neutrophils into NALT at 24 h, which declines by 48 h after infection. Infection of IFN-gamma(-/-) [iFN-gamma knock-out mouse (GKO)] C57BL/6 mice with wild-type S. pyogenes resulted in local dissemination of bacteria to draining lymph nodes (LN), but did not lead to systemic infection by 48 h after infection. Infected GKO mice had an increased influx of neutrophils into NALT compared with immunocompetent mice. Thus, IFN-gamma-induced responses are required to prevent local dissemination of streptococci to the draining LN. PMID: 19243434 [PubMed - indexed for MEDLINE] 1/3 of children have recurrent infections is scary. What are wild-type S. pyogenes?

The nih and others are calling for lumbar punctures. Does anyone know what tests Swedo and the other drs want done? What viruses and bacteria are they looking for? Thanks.

Lots of abx - ear infections - uri - stomach flu - scarlet fever(approx 4 yrs old) Sickly - would not be here without abx. Have not done glutathione treatment - never offered.

My ds got sick when he was 7 in 1st grade and was tested yearly - no impairment. He did not have cognitive decline until end of 5th grade when he got sick again and lost major ground in 7th grade after another illness. He has not recovered. He is "classic pandas" and probably has a comorbid condition - still searching. I don't care what you call it - just fix it.

Heart - partial bundle branch block - past or present. Intermittent problem? Thanks.

You son can be pandas plus a comorbid condition. Example: Tourettes(tics)+OCD+ADHD this is very common for TS and is referred to as trifecta and in our case equals pandas.