EAMom

yikes, it also sounds a bit PANDAS-like infection or stress triggered About 90% of KLS patients associate an event with their first KLS episode. This event is most often a type of infection or cold, but may also be associated with stress, sleep deprivation, alcohol or marijuana use, physical exertion, traveling, or head trauma. they may outgrow it (to a certain extent) In many cases, the disorder disappears as mysteriously as it appears; often when patients reach their twenties. Of the patients that have been studied, more than 90% will outgrow KLS symptoms and even those who have some degree of it left after ten

have you checked for lyme and other tick borne diseases? headaches and joint pain make me think Lyme first (not that it can't be seen with PANDAS).

how old is your son? I am amazed NIH put him on asprin! did they think it would work like ibuprofen? did it do anything?

H JUliafaith, hmmm. I have not heard of chlorella before! Well, I'm interested to know what my dd's levels are now...as I've been doing some coromega in smoothies. She won't take fishoil pills or many supps, but I am able to stick stuff (coromega, probiotics, magnesium) in smoothies. So your son's levels seem pretty reflective of his diet. Does he eat eggs? Is your son a couch potato or pretty active? What I don't understand is that my dd's activity level increased in the past year, but her cholesterol got worse! We're not big meat eaters, but she does eat 1-2 eggs a day.

Is this the BBB conf? In S. Ca (Irvine) ? http://pandasnetwork.org/2012/05/uc-irvine-presentation-and-reception-652012/ here's info on the PANDAS parents symposium http://pandasparentsymposium.blogspot.com/

How high we're they? I wasn't terribly concerned last year, but now at 288 with sky high LDL, I have to wonder what is going on! I wonder if that is the 'total #'? Do not know how to read all of this myself, except that the HDL is the good number and can offset the bad LDL a bit. Here are my son's numbers: HDL: 74 (ok) LDL: 151 (High) Triglycerides (fats carried in blood from food you eat): 121 (normal) Total: 249 (High) Here is an interesting article on it: http://www.webmd.com/cholesterol-management/guide/understanding-numbers well geesh, the ldl is "borderline high" according to your link, but that high HDL is great. Since HDL is factored into total cholesterol, it is driving that number up. If you look at his total cholesterol to HDL ratio 249/74 =3.77 ...that is pretty close to ideal. http://cholesterol.emedtv.com/cholesterol/cholesterol-hdl-ratio.html What is his diet like? how old is he? Does he take fish oil?

How high we're they? I wasn't terribly concerned last year, but now at 288 with sky high LDL, I have to wonder what is going on!

yes, I thought it was PANDAS. I wonder if the extreme exertion (didn't he go on some type of survival camp?) somehow reset his immune system? (or he outgrew it?) I have a friend with IBD who got a really bad illness while on a trip (had to be hospitalized), and that reset her immune systerm. Her doctors were amazed, they they scoped her the next time they could find no evidence of bowel disease.

there are also keens (come in versions that aren't sandals), teva's (they makes cool sneakers too), and some of the merrels that have that drawstring closure (is that what you call it?). There are probably other brands too. It's funny, I was having a discussion with my kids the other day how it is possible to (nowadays) have a normal existence and go your whole life without knowing how to tie shoes!

yeah, and it is so irritating the way she gravitates towards carbs (bread, not necessarily whole grains) instead of veggies/fruits. Ugh.

Don't know if amazon does that! Where do you get yours from? I'm not totally out, so I can wait for cooler weather.

Hi minimaxwell, yes, I give the Jarrow Sac. Boulardi and I also have some I. flora kids http://www.amazon.com/iFlora-Probiotics-Kids-Ounces-Powder/dp/B000FLLUDK/ref=sr_1_1?s=hpc&ie=UTF8&qid=1341800431&sr=1-1&keywords=i+flora+kids I have acidophilus pearls in my fridge by dd won't take them (I have to mix her probiotics into food like smoothies...she doesn't know I do it). I was also going to order 1) Nutricology Gastroflora--lactobacillus acidophilus, l. rhamnosus, l. casei, and bifidobacterium longum http://www.amazon.com/Nutricology-Gastro-Flora-Vegicaps-90-Count/dp/B00014FLW2/ref=sr_1_1?s=hpc&ie=UTF8&qid=1341799902&sr=1-1&keywords=nutricology+gastro+flora 2) Source Naturals Dura Flora (note: I think the amazon description is for another product, for weight loss!)---bacilus coagulans http://www.amazon.com/Source-Naturals-Flora-Billion-Capsules/dp/B001FWXTZ0 I decided I should be scientific and (per the CNN article) try to get as many as the probiotics (maybe rotating, not necessarily giving everything every day) that were good for immunity (so less infections) and for those on abs. There were: those on abs: 1) s. Cervisaie Boulardi (sac. boulardi) 2)Lactobacilus rhamnosus 3) bacillus coagulans For immunity: 1) L. casei 2) L. rhamnosus (same as above?) 3) L. acidophillus here's a link to the CNN article http://edition.cnn.com/2009/HEALTH/03/10/healthmag.probiotics.stomach/index.html it is kind of confusing!

Okay, my gut instincts were right. I'll wait until I'm totally out and get some stuff from the vitamin shoppe to hold me over if needed.

Hi DC! I have the cholesterol book on hold at the library, so I will get to read it soon I hate to give up eggs (I buy the cage free ones with DHA omega-3) since they are one of the healthier things my dd likes (egg salad sandwhiches) for lunch. I guess I have to educate myself since I have been reading such conflicting information re eggs. I have more concern about her carbs (she seems to graviate towards non-whole wheat junk food baked goods) and the impact that might have on her LDL. I've been being better about sneaking in some coromega (into smoothies) and also some Chia Seeds (that's easy to sneak into a lot of stuff) into her diet. I just wonder if there is something PANDAS-y (not diet, or genetic, or exercise related) that is the cause of the values. I am slowly planting the idea of seeing an integrative doc, Dr. Swcheig, (who does PANDAS and Lyme) up in Petaluma in dd's brain. http://hillparkmedicalcenter.com/pediatric-autoimmune-neuropsychiatric-disorder-associated-with-streptococcus-infection-pandas/ I am a little worried about seeing an integrative doc (due to the emphasis on diet...not sure gluten free with work with the history of AN). But, I do feel like this guy would do a better job of peeling away the layers than mainstream docs. Our ped doesn't want us to even repeat the bloodwork (with her) and she wants us to see a cardiologist (she feels it's out of her expertise)...so we may do that first just to see what they have to say.

THanks, good point about the mycoplasma, I was wondering!

Hmmm...the article says that zinc might DECREASE HDL (which is the good cholesterol). We didn't get her zinc levels checked. She's not on a zinc supplement. We haven't gotten back the breakdown of HDL/LDL yet. I can post when they are in. Although zinc has many benefits, zinc supplementation may reduce good cholesterol known as HDL in your body. However, further research is necessary. Read more: http://www.livestrong.com/article/530227-zinc-hdl/#ixzz1qu72oCtE YEs, I think the anxiety might be a factor! Is she taking omega 3 fish oil? It lowers the bad cholesterol, and actually is the main ingredient in one of the statins (don't know which one.) We take them, and I know that both DS and my cholesterol lowered as a result. No, she won't take fish oil , even in the capsule form. She also won't eat fish. She does get about 5-6 of those Gold Circle farm Omega DHA eggs per week, so she does get a bit of DHA. 2 eggs are supposed to have 300mg of DHA. I cook with mainly with Canola oil, sometimes olive oil. YEah...I don't think the eggs are a problem. When dh (briefly) went on the South Beach diet, he ate MORE eggs and he lost weight and his cholesterol went DOWN. Hi. I'm a newbie here and was reading some old posts.... I noticed your comment about dd not liking fish oil... I wanted to share my wonderful experience with Nordic Naturals Omega Gummy Worms... My 8 yr dd is so so so picky.... And she loves these:-) it's like candy to her!! My dd likes the gummy worm better, they make a gummy fish version too! You can find on amazon or drugstore.com for abt $20 for 30 worms! I have been mixing the coromega orange packets in smoothies. Unbelievably, she is picky about gummies too!

wow...Interesting that her triglycerides went up so much! Well, it took almost three months to get my daughter on full strength Amox. It's been 7 weeks now. Her Triglycerides are back to normal (75- was in 200's), Total Cholesterol is still abnormal low but rising (120- almost normal). Her sed rate is 53 (coming down from 90's), C-Reactive is now normal. Wbc/Rbc is now normal. Total Iron,binding & capacity are now normal. ANA is still positive but her hexagonal phase confirm is finally negative. good news! How interesting!

I was about to order some probiotics on Amazon...and I had this weird thought about how hot it's been all over the US. I don't know where they are coming from, but I assume USPS and UPS trucks (and warehouses?) aren't all air-conditioned. What does everyone think? better to buy a smaller stash from Whole foods (is that better?) and wait until cooler weather to stock up on the online stuff?

well good grief! I ended up doing the personal beliefs exemption. We asked out ped re the tetanus titer and she is balking at it. Apparently I do not "understand" about the pertusis vaccine too. groan. does anyone know of any literature that says PANDAS kids should not be vaccinated? (I would think NIMH would be very careful about saying that!).

http://www.clinicalconnection.com/exp/EPVS.aspx?studyID=326293&slID=6009728 Inclusion Criteria: - Ages 4 -14 years. - Presence of OCD and two B criteria above (PANS) - Current episode OCD of recent onset (less or equal to 6 months) associated with infection - Symptom onset appears temporally related to infection or exposure - Symptoms are of moderate severity with significant impairment (CGI of moderate or worse) and CY-BOCS of more or equal to 16. - Parental willingness to accompany their child for multiple study visits and be responsible for medication compliance.

I would have to agree...I wonder how much actual science/research was behind the "single dose" is sufficient theory. Just like they say a tick has to be attached for 24 hours...I'm interested in seeing the actual studies that demonstrate this (esp. when those same people probably don't even know how to test for Lyme in the first place, relying on the flawed elisa/cdc quest criteria).

We paid almost $600 for the test! (We hadn't met our $1000 deductible so it wasn't covered). Did United Healthcare scam us?

There is a private FB group for PANDAS kids. Browneyesmom would have more information.

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). I tried the Natrapel wipes in Florida at a zoo. I got 3 moquito bites. 1 bite was on my arm where I had definitely put the wipe. 2 other bites were on the side of my foot where I probably didn't wipe specifically (although I did wipe near it on my foot). (I am a mosquito magnet.) My younger dd (mosquitos also like her) also used a Natrapel wipe and didn't get any bites. My father-in-law (who has never been bitten by a mosquito) didn't apply any repellent and got no bites. (Irritating huh?) My older (pandas) dd (mosquitos aren't usually attracted to her like my other dd and me) got about 6 bites. She didn't use any type of repellent. The Natrapel wipes are small...you could only use 1 per person depending on how much skin was exposed. As far as how long they lasted...hard to say. We applied them about 1 pm for the afternoon at the zoo. When I went swimming at the hotel at 9pm ish was was getting swarmed by mosquitos and got several bites (but a couple were on my arms when were previously covered by clothes). Compared to the deet stick I normally use I would say: 1) not quite as effective. With the deet (past experience) I just put a few streaks here and there and I am well protected (would get no bites). 2) likely not as long lasting as deet (considering I got attacked 8 hours later...package says lasts 8 hours) 3) seemed to work well for my younger dd--although she did also get lots of bites that evening at the pool (so definitely need to reapply after a few hours)

wow