EAMom

upper right hand corner...you can pick either "forums" or "members" under search section. I find the search engine on this site to be pretty slow (or doesn't work well). When I want to search, I tend to to to google and search "ACN forum PANDAS" and then add on whater ever I want to search eg: "ACN Forum PANDAS vitamin D"

that's 1 step up from my father's doc (I call him a doc in the box). He refuses to even test my father's vitamin d level. My dad is 96.

yes, my PANDAS dd has reacted when her younger sister has a fever/is sick with a virus ... even if PANDAS dd never gets sick herself. Apparently her immune system is still doing SOMETHING!

Yes...that is a big dilema. My PANDAS dd's tonsils LOOK normal. I don't think anyone will take them out for us (in CA). But, I keep hearing about kids with normal looking tonsils that end up being quite diseased once removed. BTW. Dr. Latimer is generally pro-tonsilectomy (even before doing IVIG). She says she cultures out a lot of drug resistant staph. Dr. Murphy goes the other way, doesn't think T/A is generally helpful (but maybe she has some selection bias, the kids who are helped immensely with T/A never get referred to her in the first place?) I have a friend from High School with a PANDAS kid...it seems that T/A really helped him. He's quite normal now (same age as my PANDAS dd). No IVIG/no long term abs. I don't think he was as severe as my dd is, but he definitely had PANDAS. He probably didn't have as many untreated strep infections as my dd did either. My dd still has her tonsils. I wish I knew what to do! NOBODY has even suggested it to us (but we are not in the East with the PANDAS docs).

Hi Vickie... did she say (mean?) tolerance for "self" (not strep?) in other autoimmune diseases (like RA, lupus) isn't it tolerance for "self" that is gone?

It's entirely possible! Where do you live? We live in N.Ca...dh's level was 16. My PANDAS dd's level was 29. This is a kid who was outside every day from 1:45 until 3:15 in short sleeve shirt and shorts (PE and then walking home). (cut off for normal for our lab is 30) I was "normal" at 31...I am outside (usually walking the dog 12-1, plus gardening) every day. I was also getting about 800-1000 iu via supps, and I drink milk. This is a good book on the topic. http://www.amazon.com/Power-Vitamin-Comprehensive-Information-Deficiency/dp/1432748106/ref=pd_sim_b_2 Also, the vitamin D council has lots of info. http://www.vitamindcouncil.org/ When I asked to be tested, the doc who ordered the test says about 75% of the people he tests are low.

We give Pepcid once daily . . . about 10 minutes before dinner . . . but my DS was also suffering from reflux, so there was a viable reason for dosing it before a meal. I know some families give at bedtime, just for its antihistamine properties, but so it doesn't interfere with digestion at all. Also will note that, when things are calm and DS is in a good place, we stick with the "regular strength," 10 mg. But when he's ramped up and his eczema flairs, we switch for a bit to the 20 mg. "maximum strength" Pepcid and that seems to be beneficial. Good luck! Does anyone know of it is better to take probiotics with an h2 blocker? Or take the probiotics at a different time? Or does it matter?

She sounds like a text book case of PANDAS.

http://www.grc.nia.nih.gov/branches/rrb/dna/pubs/Becker%20and%20Schultz%202009.pdf Tylenol, asthma, autism... Pretty interesting stuff! Check out the graphs.

another interesting thing: dd's weight is 50% percentile now...but could this have something to do with her past AN? http://www.endocrinetoday.com/comments.aspx?rid=40070 Hypercholesterolemia has long been known to be associated with anorexia nervosa. Typically total cholesterol and LDL are elevated; HDL may be high also. With refeeding, cholesterol levels return to baseline. Other forms of malnutrition are not usually associated with high cholesterol. However, until recently the underlying mechanism has not been clearly delineated. A PubMed search revealed only a handful of articles reviewing hypercholesterolemia due to anorexia. There have been several theories regarding the pathophysiology. These include reduced cholesterol metabolism, starvation-induced increased flux of peripheral cholesterol to the liver, decreased LDL-receptor activity and/or decreased triiodothyronine associated with a starvation state. maybe something is wrong and her LDL receptors (or something) never reset once she gained the weight back?

It is important to identify all household carriers by blood test (ASO and DNASE not throat swab. Dr B also tests household for mycop IgG/IgM. Perhaps both? My daughter is considered a carrier, with consistent positive swabs, but no elevated titers. we've never bothered to blood test our non-pandas carrier (younger dd). She was positive on throat swab several times in preschool/kindergarten. She didn't have symptoms, and would clear after Azith (we re-cultured)...but that is a good question now, if we should get titers to see what they are doing. Our PANDAS dd (like pegs dd) never had elevated titers (despite positive cultures/severe OCD/PANDAS) and she might also be considered a carrier (since she didn't clear on her own, and after initial fever). ASO/dnase can also be confusing...there is a study where carriers had falling titers, even though they continued to culture positive. Of course, rising titers (with no positive swabs) would be suspcious...and make you think there is infection somewhere...so I can see them being useful in that situation. Also, it seems (via an informal survey here) that girls are much more likely to not even get elevated strep titers in the first place. I don't think this has ever been looked into in a "real study". Here's the thread: http://www.latitudes.org/forums/index.php?showtopic=9495

everyone had good advice -definitely call about the NIMH study! -take videos (to show docs later) -get your dd's re-throat cultured Also, get all family members (in the house) throat cultured to check for strep carriers. My younger non-pandas dd is an assymptomatic strep carrier (didn't clear with augmentin, did clear with Azithromycin) and my PANDAS dd reacts to her (even while PANDAS dd is on abs). Clearing strep carriers in the house is important! Also, strep carriers can pass strep back to PANDAS kids after they are done with antibiotics. Also, even if all throat cultures are neg, many pandas kids find long term abs to be helpful. Maybe strep is "hiding out" in non-throat locations (sinuses, vaginal, skin, perianal). My PANDAS dd had vaginal strep (in addition to strep in her throat, and her sister having strep in her throat). This article may be good to show your doctors (advocates using 3-6 weeks worth of abs initially, which is better than 10 days at least!). http://www.ocfoundation.org/uploadedFiles/MainContent/About_OCD/Expert_Opinions/IOCDF%20Expert%20Opinion%20-%20PANDAS(1).pdf Lastly, there are other reasons why antibiotics are helpful (in addition to treating obvious active infections and preventing future strep infections). Many PANDAS kids are on long term antibiotics for YEARS (until the age of 18 or up). Per Dr. Murphy (PANDAS specialist in Fl.)--there are other reasons why abs can help: -"my child is addicted to augmentin" could be due to 1) decreased infections 2) immune modulating role of antibiotics 3) there are trial of clavulate for depression/anxiety 4)glutamate transporter (down arrow)

has anyone in N. CA (or in the West) thought about seeing Dr. Schweig in Petaluma CA? http://pandasparentsymposium.blogspot.com/p/sunjya-k-schweig-md-integrative.html

good! here is a link that basically explains why the single dose of doxycycline (as a prevention of Lyme) is bunk http://www.ilads.org/lyme_disease/written_testimony/5%20Maloney-Prophylaxis.pdf

not many on this forum see her here's a thread that explains some of that http://www.latitudes.org/forums/index.php?showtopic=7024&pid=56279&mode=threaded&start=#entry56279 Dr. Bouboulis (CT), Dr. Trifiletti (NJ), Dr. Latimer (DC area), and Dr. Kovacevic (Chicago) are the most used PANDAS docs on this forum. Where do you live?

Yup! saw that in the article. Thanks! It definitely confirmed what everyone has been saying here.

It also has a good chart of Lyme vs. PANDAS symptoms.

It depends on the antibiotic and it's half-life. Which one do you have? Also, if you have a antibiotic that you have to take frequently (say 3x daily) it makes it harder to squeeze in a priobiotic (which you normally are supposed to take 2 hours before or after an antibiotic).

It doesn't discuss kids having both PANDAS and Lyme...otherwise it is a good review article. http://www.dovepress.com/lyme-disease-and-pediatric-autoimmune-neuropsychiatric-disorders-assoc-peer-reviewed-article-IJGM here's a quote: "Understanding LD and PANDAS begins with knowledge of their respective infectious agents. Although B. burgdorferi and GAβHS are vastly different microorganisms, their ability to evade the immune system and invade a wide variety of tissues, including the coveted central nervous system (CNS), is a paradigm of survival. The mechanism with which it then results in diverse somatic symptoms and neuropsychiatric sequelae underscores the need for experienced clinicians, laboratory testing, and early treatment." It also has a good chart of Lyme vs. PANDAS symptoms.

it doesn't discuss kids having both Lyme and PANDAS together. Otherwise it is a really good review article: http://www.dovepress.com/lyme-disease-and-pediatric-autoimmune-neuropsychiatric-disorders-assoc-peer-reviewed-article-IJGM here's a quote: "Understanding LD and PANDAS begins with knowledge of their respective infectious agents. Although B. burgdorferi and GAβHS are vastly different microorganisms, their ability to evade the immune system and invade a wide variety of tissues, including the coveted central nervous system (CNS), is a paradigm of survival. The mechanism with which it then results in diverse somatic symptoms and neuropsychiatric sequelae underscores the need for experienced clinicians, laboratory testing, and early treatment."

Here's another recent thread on probiotics http://www.latitudes.org/forums/index.php?showtopic=17899

thanks everyone for their reponses! interesting stuff!

so you think the asprin was better for anxiety, but ibuprofen better for OCD? which one was better overall? It might be an interesting option for older PANDAS kids.Not sure what age is okay to start using asprin? oh...here it is...US surgeon general doesn't rec. for those under 19--but does this mean it's okay to give if they don't have a fever? "The U.S. Surgeon General, the Food and Drug Administration, the Centers for Disease Control and Prevention, and the American Academy of Pediatrics the National Reye's Syndrome Foundation, and WHO recommend that aspirin and combination products containing aspirin not be given to children under 19 years of age during episodes of fever-causing or viral illnesses." http://www.reyessyndrome.org/aspirin.html

so he's on of those guys that thinks you need elevated strep titers to have PANDAS? Ugh. dark ages...hopefully he has changed since you saw him?

Hi! I have 2 questions... 1) can lyme "come out" with a respiratory infection. In other words, can someone have assymptomatic lyme, and then it becomes symptomatic when that person gets another infection (like a flu/mono etc)? (and then sticking around for months, but getting worse again with each infection) 2) can lyme be episodic? Can a person have LYme symptoms (fatigue, pain, headaches, hair loss, brain fog) that improves (maybe temporarily?) without treatment? thanks! just wondering (for a friend, not my child)