EAMom

It would be great if those who have done the 23andme would post if their PANDAS kid is AA, AG, or GG. Norcalmom is correct that these results may apply those of Turkish decent, not necessarily everyone. So, it would be super interesting to see what folks here are getting.

Yes...by the time we finally learned about PANDAS our dd was quite full-blown (had to be hospitalized for anorexia age 7). In retrospect, we probably missed the first couple of exacerbations (they were more low grade, urinary frequency, anxiety, sensory stuff) and docs always presumed any fever to be viral (docs NEVER did throat cultures when she got a fever)...so I suspect in my dd's case, the untreated strep took its toll and her PANDAS became severe and chronic. I should add that we had to contact over 20 doctors about her anorexia/symptoms before one mentioned "testing her for strep"...this was 5 years ago. Her throat culture was positive as was her sister's (asymptomatic carrier). We plan on keeping her on abs until age 18 (anorexia struck at age 7, she's 13 now). She has had 3 HD IVIG's over the years. She's not 100% but is pretty good, 90%, has friends, does well in school and is a healthy weight. She still has some anxiety and mild OCD that is from PANDAS though.

PS I should add that with multiple exacerbations, symptoms tend not to "go away" with just 10 days of antibiotics. It seems that people are finding with the 1st or 2nd episode, a child may "return to baseline" pretty quickly with antibiotics. With repeated exacerbations, something happens to the immune system. The child starts reacting to more than just strep for one thing. The PANDAS becomes chronic (in one magazine, Swedo mentioned that after 3 exacerbations the PANDAS will become chronic). Also, some kids do not get diagnosed for years, when the PANDAS is already chronic. At that point, more aggressive antibiotics (long term, full strength) PLUS treatments like IVIG can be needed to get back to baseline (or closer to baseline). ^so that is one big reason to think about long term antibiotics ^^prevent future exacerbations which will be more severe and harder to "control"

Here is a new paper by Dr. Murphy with more details on the anti-inflammatory and neuro immune properties of various antibiotics http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3494283/#R5 Also, IMHO many PANDAS kids DO have chronic low grade infections persisting after the typical 10 day course of antibiotics. Perhaps this has to do with their faulty immune systems (immune system is busy attack in basal ganglia instead of strep) and/or their incredible sensitivity to even small amounts of anti genic stimulation (they react to strep in family members as well as non-strep bacterial or viruses). I think in some kids, strep (or other bacteria once pitands sets in) persists within the tonsils or sinuses, or intracellular, or biofilms as Missmom mentioned, where it is hidden from antibiotics (just as Lyme "hides out" in cysts and tissues). Thus, the long term antibiotics may offer some aid as the low grade strep (etc) slowly "comes out" of hiding, continuing to "stir up" the inappropriate immune response. Also, many PANDAS kids do turn out to have chronic Lyme as an underlying trigger, and long term antibiotics are needed for that. PS... this is what Dr. Murphy said at the 2012 IOCDF meeting 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)

I agree Dedee!

I don't know anything about thyroid, but how much vitamin D are you giving daily and is it drops or a pill? Also, what was his D before? Does he go out in the sun lot? Vitamin D levels are supposed to peak in August (seasonal differences). I was giving my dd D about 4000 iu per day and I was surprised her level stayed exactly the same (31). I think this was between oct and march (or so). Maybe it would have dropped more without the vitamin d drops (due to winter)? I actually put the drops in her pb and j sandwich for school cause she wasn't wanting to take the pills at that point. At the time, I didn't know if the drops weren't working or if she wasn't eating her sandwich or what was going on.

I know Mass General sees PANDAS cases. I have heard they are even going to open a PANDAS clinic this fall. But, if Lyme is a possibility, do not expect much help there (Dr. Steere who is a big chronic Lyme naysayer is there). Otherwise I have heard of people getting good treatment for PANDAS there, including IVIG. Maybe someone with more first hand knowledge will chime in (and also which doctors to see). PS It looks like Dr. Kyle Williams is going to head up the PANDAS/PANS clinic at Mass General. He is at the bottom of this list of speakers for the NE PANDAS conference http://nepandasparents.com/aboutspeakers.html I think attending the NE PANDAS conference would be a great idea for your friend! Not sure if the 24 year old son is in shape to attend as well?

S&S yup, SSRI's don't help many PANDAS kids. I think it is so individual and depends on the kid and the SSRI. Lexapro was bad for us (side effects) although it did help the OCD in some respects. It's really important to keep doses low as well.

In one of her lectures (I think it was UC Davis Mind Institute) Swedo (of the NIH) said once daily pen doesn't work. She said pen must be given 2x daily (due to short half life). She said if you miss a dose, you are unprotected for days.

Oh, here is Murphy's new paper (hope this is right, hard to tell on my phone!) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3494283/#!po=1.91257

Btw, NAC made my dd's "thinking fuzzy."

Double post

My dd13 was on Prozac 10mg/day from 2008 until fall of 2012. Other treatments included Azith 250mg/day and 3 HD IVIGs. She still takes Azith, her last IVIG was 2 years ago. We tried to wean her off Prozac several times before fall of 2012. We would do it slowly, for example decrease from 10mg to 5mg over a month. By the time we would hit 5mg, gee, we'd be ready to put her back on!! Her anxiety would spike, she'd get very irritable, etc etc. So, back to 10mg she would go. Finally last fall, we were able to wean her off without things falling apart!! Yeah! Our psych took that as a sign that she might be outgrowing pandas. She's about 90% (mild OCD in certain situations, some anxiety in certain situations), but overall good. Can't say she was any worse off the Prozac once we finally weaned her. I should add that Prozac does have other properties aside from just being a "psych drug", so maybe that is why if helps some kids. Dr. T posted something on FB a while back about Prozac having anti viral properties. Dr. Murphy has a new paper out http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3494283/#!po=1.91257 and the anti- inflammatory properties of Prozac are mentioned (also discusses immune mod properties of antibiotics.)

Does she have Lyme? My friend's dd has Lyme and Babesia (no PANDAS or PANS), and fatigue is her #1 symptom. Mainstream docs wanted to call it "post-viral chronic fatigue syndrome", but she finally saw a LLMD got a diagnosis. (Lyme culture was positive etc).

here an article where adult PANDAS, cpap, and tonsillectomy is mentioned http://www.psychologytoday.com/blog/attention-please/201107/evil-pandas-part-ii-adult-affliction-treatment

I agree with Rowingmom about seeing a LLMD...esp since you mention joint pain and fatigue which are classic Lyme symptoms. Also, LLMD's look for other infections like mycoplasma, and coinfections. I also agree with LLM about using the CPap machine. Even if you did try a 1mo. course of pen, that might not help (esp if Lyme or chronic PANDAS). Most folks do not find pen to be terribly clinically effective, stronger antibiotics are needed. http://www.urmc.rochester.edu/news/story/index.cfm?id=981 PANDAS doesn't necessarily go away in adulthood, esp if the underlying trigger remains (eg Lyme or strep). Do you still have your tonsils?

Dr. Murphy recommended an ideal level of 50 (at the IOCDF Chicago conference). Not sure if she meant "at least" 50...assume higher is okay. @NancyD is 10,000 what your dd needed to raise levels, or just to maintain once at she got to 65? @norcalmom how long did it take to go from 16 to 45 on 5,000 a day? @trintiybella 11 to 44 took how long and what dose were you giving? Also, what months were you doing the tests in?

HI Surfmom, I have questions! (I apologize if already answered.) I'm glad she is doing better! How old is she? How big is she? What is the rationale for 1gm/kg IVIG (vs. Swedo's or the autoimmune dose of 2gm/kg)? Has she ever had 2gm/kg IVIG? Are you sure it isn't Lyme? It seems that some of the really tough weird PANDAS cases end up having underlying Lyme at the root., esp when IVIG doesn't stick. Is she on antibiotics now? Which antibiotics have you tried? Did they check for viruses and other infections? PS oh I see she is a HS freshman

Has he ever cultured positive for strep? (Many PANDAS kids get strep w/out typical symptoms.) Did he get any increased symptoms when you had strep? Negative strep titers (ASO or anti dnase b ) do not in any way rule out PANDAS. Many PANDAS kids have normal strep titers http://www.latitudes.org/forums/index.php?showtopic=16476 So your son was normal until 2 years ago?

PS I agree about contacting PANDAS network. Also, the clinic is new, so it may take a while to get in. I wouldn't put all my eggs in their basket. Keep Hillpark in mind as a resource as well.

Hi, We've been there. My dd was a prior Stanford (LPCH) patient (prior to existence of PANDAS clinic) --hospitalized in 2008 (age 7) with PANDAS anorexia nervosa for 5 days (docs then were reluctant at the time b/c her throat looked "fine", but did do a throat swab and were surprised when she was positive)...we ended up following up our PANDAS treatment with Margo T. (psychiatrist who was with Stanford originally, now in private practice near Stanford). --eventually got HD IVIG 3x (this was 2-3 years ago, when UHC covered IVIG for PANDAS) as an outpatient. 1st immunologist we saw (Lewis) okayed IVIG based on her Cunningham test (although he wasn't terribly interested in PANDAS he knew and respected Dr. Cunningham's work). He also checked for immune def (she didn't have it). We did IVIG #1, #2 through him. 2nd immunologist (McGhee, who was newer) was more PANDAS sympathetic (did IVIG #3 through him). --also had echo (at least 2-3 years ago) there since out of state PANDAS doc recommended it due to high Cam Kinase ll (it was in the SC range) We went to the PANDAS clinic (our long time psych Margo is involved in clinic so we got an appointment easily) in the fall. Our issues were flare from sleep away summer camp and residual OCD (we're at 80-90%). They repeated the immunology workup (since it had been a few years) and tested for some other things (mycoplasma, toxoplasmosis, celiac, vitamin D etc). They didn't test for viruses or any tick borne diseases. I asked re the viruses but they didn't want to do them (I didn't ask re the tick dz.) Labs were pretty normal except for high IgE (so we did allergy skin testing there...allergies to pollens etc). We agreed at the time we didn't want to do anything drastic with our dd (IVIG or T/A) since overall she was pretty good. We did try going gluten free (which failed). Oh, we also got titers drawn for Tetanus since we had taken the exemption for 7th grade shots (Dtap). (Our reg ped had originally refused to do titers and was annoyed we weren't vaccinating.) Rheumy agreed our dd was unlikely to get pertussis or diphtheria on Azith and agreed it made sense not to rock the boat with unneeded vaccines. She was more than happy to do tetanus titers (which were plenty high). Long story short...I'd say it is a pretty good place for at least a start of a workup. My dd was already on long term abs, but I do know of a couple others that got rx for long term abs through them. If it is in network, and your insurance covers it, it would be a good place to do IVIG. Also, there are other specialists there (some more pandas friendly than others) if you need an echo or other tests. That said, we're probably going to be going up to Hillpark (Petaluma) to see Dr. Schweig and/or Amy Smith (Integrative practice, highly recommended by PANDAS network.org). My understanding is that they will test for viruses, tick dz's (if appropriate) and other things that Stanford wouldn't (more involved food allergy testing etc). They are less mainstream, maybe a little more cutting edge for PANDAS kids?? Basically we are trying to figure out why we still have residual OCD. We also have a funky thing with high cholesterol going on which the rheumy at the Stanford thinks is from inflammation. She said she had seen others with autoimmune dz with high cholesterol which resolves when the autoimmune dz is treated. NOTE! if there is possible Lyme (or co.) Stanford might not be the right place to go. I have a friend whose dd (she is not PANDAS, but reg Lyme symptoms fatigue, brain fog, pain) that was misdiagnosed there for 1.5 years. They (this is LPCH, not PANDAS clinic per se) disregarded her 5 positive bands on a standard Western Blot and positive erlichia and extensive camping history. They gave her a diagnosis of "post viral chronic fatigue syndrome" and refused to do more extensive lyme testing or testing for co infections or anything beyond 21 days of doxycycline (which they rx'd to humor the mom). I finally convinced parents to see Schweig who did a Lyme culture test (which positive), also positive for Babesia and mycoplasma...so now she is finally getting treatment. I hope that helps! Let me know if you have other questions!

I thought there were some previous discussions of adults (moms) who had PANDAS who found certain types of BC pills to help, others didn't. Unfortunately I can't find the threads when I search.

Is she only pediatric, or does she treat adults too?

https://www.facebook.com/notes/gunilla-gerland/on-pandas-the-leroy-controversy-and-false-dichotomies/543976045637557

Hi Norcalmom, Do you know if is the scale for Cam Kinase ll the same with the current test? In other words, is 215 in the SC range (above PANDAS)?