EAMom

yes, the generic is one of Target's $4/mo rx's

http://goanimate.com/videos/0XCA4kvs8vk4?utm_source=linkshare :P :P :P

this is the rey complex figure test http://en.wikipedia.org/wiki/Rey-Osterrieth_Complex_Figure re the alphasmart My dd still uses her alphasmart (6th grade)! She does lots of her assignments on the family desk top, but also uses the alphasmart. I think some private schools "assign" kids lap tops by the 6th grade, but our concern was that a lap top (for her to take to school--big public middle school) would either be damaged or stolen. The alphasmart is also light and no distractions (no web) which is nice. She started using the alphasmart in the 4th grade. We were lucky b/c her teacher had a bunch in her class for the kids to use, so she wasn't a misfit in having/using one.

Oh...see if they will do the Rey-Osterrieth (sp?) Complex Figure Test...PANDAS kids do really badly on that. My dd got in th 2nd percentile! My PANDAS dd is a BAD speller, bad handwriting, but somehwere along 2nd grade something clicked with reading. She is a very proficient avid reader with great comprehension (just finished the 6th grade). If you pm me your e-mail, I can e-mail you the full-text of this study. http://neuro.psychiatryonline.org/article.aspx?articleid=181293

Here is a link re red yeast rice and the controversy. Of course it begs the question, if statins are a problem, then would naturally occuring statins be safe (or safer?). Also, if she can't take a statin with Azith, wouldn't red yeast rice also post a problem. http://heartdisease.about.com/cs/cholesterol/a/Nrxcol_rry.htm Anyway, red yeast rice is something to consider (plus, I think statins are overused/overprescribed and big pharma evil), if some of these other things we're trying (adding in more fish/oil, magnesium, etc) don't help. It does seem like red yeast rice gets good reviews on amazon http://www.amazon.com/Natures-Plus-Yeast-Extended-tablets/dp/B004NG67EA/ref=pd_sim_hpc_1

Thanks! . I ordered some of the Coleman wipes (IR3535 20%) to compare to the other wipes I ordered (picaridin 20%). I'll try them in Fl if there are Mosquitos. I could do one type of wipe on each side of my body to see what works best (at least for Mosquitos). Just an fyi on the coleman wipes- the package is difficult to close (at least the one I purchased). I could see my daughter not closing it all the way and them drying up. If your dd takes them to camp you may want to place in a ziplock bag. I sure hope it's the IR3535 that is the protection factor and not something else combined with it in the Avon line, because I actually prefer the unscented coleman products. I'm not crazy on the "gentle breeze" scent in avon. good point! I haven't opened either one yet but it appears: 1) the 16 Coleman wipes are in 1 package (not individually wrapped) so the problem of them drying up is real (esp. if you don't use them all at once). The package is also a little large to throw into your pocket or small purse. 2) the 12 Natrapel wipes are each individually wrapped. That makes it easy for travel and you don't have to worry about them drying up. You can also keep 1-2 in your pocket or fanny pack or purse for emergencies (and it doesn't take up much room).

replying to my own old post...MTHFR was neg last week we bumped to prozac back down to 10mg/day, as her behavior didn't seem any better on 15mg/day (vs. 10) and I have other concerns about SSRI's (so the lower to dose the better). I have also been trying to supplement with some Magnesium

I would also Frontline your dog.

Hmmm, maybe I should try cooking with coconut oil? I keep seeing it at Trader Joe's and Whole Foods. http://www.thedailygreen.com/healthy-eating/eat-safe/spinach-pesticide-residue#fbIndex13

yeah, that is the big question! is it the nasty strains of strep (pehaps worse than 30 years ago, and it sounds like your area/ DC is esp. bad)...or the fact that PANDAS kids have bad immune systems against strep. And is the "bad immune system against strep" something that causes the PANDAS in the first place ("bad immune system against strep" causes more strep infections, and more strep infections lead to PANDAS)? or is it that the unlucky kid gets the wrong strain of strep, and once the wheels of PANDAS are set in motion (autoimmunity, the immune system attacking the basal ganglia instead of the strep), these kids develop a vunerability to future strep infections/lose the ability to "fight" strep in a normal and productive manner? In other words, is the "bad immune system against strep" the cause (or one of the causes), or the result of PANDAS?

good suggestion! but yikes on the positive swab, despite being on abs! What dose of Augmentin is she on (and how much does she weigh)? Is she getting the augmentin 2x daily? What ab did they put her on? does she have her tonsils?

can you do a steroid burst, or course of steroids to hold you over? We've done that before. WE've only done 5-6 day courses of steroids, and in our case it's taken about 2 weeks for the benefit to "kick in". I know other people have done longer courses, and it's kicked in sooner for some. an alternative would be advil, to see if it gives you any relief. For us, the advil kicks in much more quickly (same day). BTW, I don't know if steroids are bad if you have bartonella, I know they are bad with Lyme. So, maybe the advil would be a better choice?

Silly men.

wow that is proof positive! - I wonder what the CDC/IDSA response would be to have the photo of the Spirochetes and the negative Elisa! Yeah...also this test could be a game changer for the claim that there is no proof of chronic Lyme and 3 weeks of doxycycline will be enough. After all, the Lyme naysayers will say the Igenex tests (if you are positive through Igenex) is just giving you a false positive. But, if you have the culture, they can't debate that.

You can post on the LYme board, but it really matters what test you ran. Igenex is recommended.

whenever I hear of a strange non-typical symptom with PANDAS, I think r/o LYme. So I googled RLS and Lyme and got this: http://www.wellsphere.com/lyme-disease-article/restless-leg-syndrome-as-a-marker-for-unsuspected-chronic-lyme-disease/348430 there's more if you google

Philamom, did you get anything back on the new Lyme culture test?

I found this on a Lyme docs webiste, and wondered if people are submitting the Igenex test costs to their PPO's and if they are getting $$ back? http://www.usmamed.com/usmaqa.html Even if you have insurance, the tests we will order from the specialty lab, IGeneX, will need to be paid for up-front by credit card. The total charge for this lab work will be approximately $800. If you have Medicare there will be no charge for the IGeneX labs. (You must bring your Medicare card with you!) If your Medicare is managed by an HMO, however, your IGeneX lab tests will NOT be covered. If you have a PPO, you will be able to submit the receipt from IGeneX for reimbursement under your out-of-network expenses.

Ok - I have this upstairs - it does have the IR3535 in it (didn't even realize). My husband uses it. http://shop.avon.com/shop/product.aspx?newdept=&s=bvSearch&c=Bazaar&otc=SKINSOSOFTBugGuardPlusIR3535RExpeditionTMSPF30AerosolSpray&bnd=&pf_id=33646&level1_id=300&level2_id=303&pdept_id=344&dept_id=421&ym_mid=&ym_rid= here's an avon product with 20% IR3535 But it is an aerosol. Also has sunscreen. Don't think it protects against UVB (I think the bullfrog does). Is this the only Avon repellent (Expedition unscented) that is 20% IR3535? it looks like this pump spray also has 20% IR3535 http://shop.avon.com/shop/product.aspx?pf_id=33645&level1_id=300&level2_id=303&pdept_id=344&dept_id=421 Maybe the "expedition" line is 20%?

from a lyme perspective, I think it would be okay to go off abs. If I remember from Cure Unknown, they did a pulse, go off abs (so the LYme would "come out") and then resume antibiotics. one of which was used to heal both the author of the book and one of the most prominent Lyme-literate doctors in the country (this particular treatment, which uses pulsed application of the cephalosporin antibiotic Ceftin, is discussed in Chapter 44, titled "How I Cured My Own Lyme Disease"). http://www.lymebook.com/cure-unknown-pamela-weintraub I don't remember how long the "off" ab time period was for the pulse. As far as going off abs from a pandas perspective, summer (assuming no travel, minimal exposure, no sleepaway camps) would be the time to do it if you ARE going to consider 3 weeks off of abs.

Thanks! . I ordered some of the Coleman wipes (IR3535 20%) to compare to the other wipes I ordered (picaridin 20%). I'll try them in Fl if there are Mosquitos. I could do one type of wipe on each side of my body to see what works best (at least for Mosquitos).

yes...I wish they would study this more, rather than just leaving us all wondering. I do supplement with D/calcium as best as I can. I'm kind of worried. I'm 5'5", dh is 5'10"...so if you average our heights dd should end up to be 5'5" (I think you take away 5" from dh's height for a girl)....I was always a tall kid, but stopped growing by 8th grade. Dd was 58 1/4 in January (11.5 years) when she 1st got her period (TMI!). I mention it b/c girls aren't supposed to grow much (or for more than 2 years) after they get their period. Since then, she's only grown 1 " (she's now 59 1/4) but that was all in a 1mo. spurt between Jan/feb. She hasn't grown since Feb. Dd is just finishing 6th grade, so I worry that she only has another year to grow (7th grade).

Ok - I have this upstairs - it does have the IR3535 in it (didn't even realize). My husband uses it. http://shop.avon.com/shop/product.aspx?newdept=&s=bvSearch&c=Bazaar&otc=SKINSOSOFTBugGuardPlusIR3535RExpeditionTMSPF30AerosolSpray&bnd=&pf_id=33646&level1_id=300&level2_id=303&pdept_id=344&dept_id=421&ym_mid=&ym_rid= here's an avon product with 20% IR3535 But it is an aerosol. Also has sunscreen. Don't think it protects against UVB (I think the bullfrog does).

Yeah, I wonder what is the best one. Here are the Avon wipes. They only have 10% picaridin (but I wonder if combined with SSS they have more repellent properties?). I read Picaridin has to be 20% to work for ticks. The wipes got good reviews on Amazon, but most of the reviewers mentioned mosquitos, not ticks http://www.amazon.com/Avon-Skin-Soft-Picaridin-Towelettes/dp/B001BGCB86/ref=cm_cmu_pg__header The Avon Picaridin spray is also only 10% http://www.amazon.com/Avon-Skin-GUARD-PICARIDIN-Spray/dp/B003TYGF8A/ref=pd_sim_bt_3 Pump too http://shop.avon.com/shop/product.aspx?pf_id=31314&level1_id=300&level2_id=303&pdept_id=344&dept_id=421 I ended up ordering these non-avon wipes instead (have 20% picaridin which is supposed to be effective against ticks) http://www.amazon.com/Adventure-Medical-Natrapel-Repellent-0165-6095/dp/B001ARBSTO/ref=pd_sim_hpc_14 This product, SSS bug repllent sun screen has a different chemicial (not picaridin) called IR3535 http://www.amazon.com/Avon-SKIN-SO-SOFT-Bug-Repellent-Moisturizing/dp/B0001ZWPI4/ref=cm_rdp_product This article mentions the avon IR3535 product ... may be effective against ticks for 3 hours http://www.ct.gov/caes/lib/caes/documents/publications/fact_sheets/tickbiteprevention05.pdf Natrapel has 8 hr wipes with 20% picaridin. I think I read they leave a residue though (but don't they all). All Avon IR3535 products include sunscreen. I wish they offered it without - for use at nightime (I use the picaridin at night). This is what our LLMD recommended for dd. edit- oops, I see you already mentioned the natrapel. It is so strange that the only way to get IR3535 is in an Avon product with sunscreen!!!!

The children experienced either growth delay or arrest while taking SSRIs, but weight gain had progressed as expected, as did puberty in 3 children. Neuroendocrine testing indicated decreased growth-hormone levels or responsiveness and low levels of insulin-like growth factor 1 (IGF-1). Cortisol function and thyroid and prolactin levels were normal. Growth rates increased after SSRIs were discontinued or after somatropin treatment was added. The authors note that SSRIs may reduce growth-hormone levels by antagonism at alpha noradrenergic receptors, which stimulate the release of growth hormones; this mechanism would be similar to that of tricyclic antidepressants. http://psychiatry.jwatch.org/cgi/content/full/2002/807/5 AND...Mice/prozac-->thinner bones http://news.healingwell.com/index.php?p=news1&id=522315 : Compared to normal mice, these animals had bones that were between 6 percent to 13 percent narrower on average. Their bones were also weaker and less dense. and "When we gave Prozac to really young mice that were still rapidly growing, it reduced the amount of bone they gained," Warden said. "It reduced their bone growth -- not how long the bones were, but how wide, and how thick." and But Warden believes that larger clinical trials are warranted. He pointed to studies in adults that linked long-term SSRI use with an increased risk for hip fracture, as well as reduced bone mineral density in the neck and spine. however For their part, representatives at Lilly said the study is far from conclusive. They point out, for example, that mice exposed to Prozac were somewhat less active than unexposed mice, offering an alternate explanation as to differences in bone mass. AND here's a 19 week study on children. Amazingly, no follow-up longer studies (that I can find) were EVER done! and http://www.healthsentinel.com/joomla/index.php?option=com_content&view=article&id=413:trial-finds-that-prozac-may-stunt-childrens-growth&catid=6:other-sources&Itemid=7 The Sunday Herald has uncovered details of a 19-week trial carried out by Eli Lilly where children aged between eight and 17 years old who were given the drug gained an average of 1cm less in height and 1.1kg less in weight than others treated with a placebo. The results revealed that treatment with fluoxetine, the generic name for Prozac, was also linked to a decrease in levels of alkaline phosphatase, an enzyme crucial to bone development. Despite concerns from America’s Food and Drug Administration (FDA) in 2001, which requested that Lilly carry out a further one-year trial to ensure the drug was safe to be used by children, no such test has ever been done. dd is on 15 mg/day of prozac. She was on 10mg/day for a long time. Not sure if she is "better" on 15 mg (but we want to recheck her cholesterol first...who 'nother post). When we tried to decrease to 5mg (a couple of months ago) from 10mg/day, her anxiety greatly increased.