jees_mom

why advil? they only gave her a 5 day course of zith. if i see any improvement at all, i'll see a neurologist who will give me more antibiotics (the pedi told me). why are so many kids on so many antibiotics? won't this go away? will she definately be on antibiotics for the rest of her childhood or can this go away one time and never come back?

my daughter's pedi is very reluctant to put her on antibiotics (her strep titers were negative- but we all know that that can happen, and the kid can still have pandas). but the pedi is going by my gut instincts and humoring me, so she said that she'll call a script in for me. the thing is, we've decided to do a short course first to see if it helps at all. if there's no sign of helping, then fine, we did it for no reason. but if there's ANY sign of tics/separation anxiety reducing, then we'll do the full-course of antibiotics. BUT i don't know which one to ask for. she said that there's no known protocol for pandas, and that she'll give me whatever i want. should i go for the 10 days of amoxicillin, OR the 5 days of Zithromax? what do i do?!!!! help please!

michael~ you need to be careful where you get tested for celiacs. not all testing places are the same. i went through prometheus labs. here's the requisition form: http://www.prometheuslabs.com/Resources/Ph...Requisition.pdf they are one of the best labs for celiacs. i would get the "celiac plus" test, which is the genetic AND serology test (the serology test checks for IgA and IgG antibodies). My insurance did NOT cover the test, which is about $800. so i decided that i would call around to the local labs, and see if they offered some of the same tests. i ended up finding out that the hospital that i go to, sends out to the prometheus labs! so, the hospital drew my family's blood, sent it to prometheus labs, the lab sent the hospital the results, and the hospital billed my insurance! cool. so if it's not covered by your insurance, call to local hospitals that DO take your insurance, adn ask if they send out to prometheus. (i hope i make sense!) good luck! btw, 2 of my children came back positive for IgG (sensitivity to wheat). the GI specialist said that that sometimes happens, and what matters more is the IgA results; which my whole family came back negative on. you CAN have negative results (and a low genetic chance of celiacs) and still have gluten sensitivy. (my friend has very gluten-sensitive children, and all results came back negative. even the "gold-standard- the small intestine biopsy- isnt' full-proof.) remember, celiac's is the END result... but you may have YEARS of gluten sensitivity, and damage being done, before you develop full-blown celiacs. chap~ what is a "gluten intolerence test"?

According to doctors at Columbia University Hospital, elevated tdg6 levels are associated with neurological manifestations. what is this "tdg6"? i've never heard of that. we weren't tested for that. i'm going to read your son's story now, in hopes it'll help. thanks!

We've already been tested for celiacs. We were tested for genetics AND IgG and IgA against gluten. That's how i know she's genetically at high risk (there are no known celiacs in either of our families). Everything came back negative. but i know that that is not full-proof. i'm jsut scared that if she does have pandas, and we donot get her on the antibiotics soon, there'll be even more brain damage. in my heart i really believe that her facial tics and separation anxiety are related to when she got sick back in may. she got sick, then within a week developed a tummy ache and separation anxiety. then several weeks later, she developed facial tics (eyes blinking and winking her right eye.) it's just all too coincidental. they tested her for strep (titers) and everything came back negative. but i now know that the titers can come back negative, and she may have it. (there was no strep taken at the original onset of the sickness.) i've also heard though that sicknesses can activate the celiac's gene. now i'm faced with this decision. to put her on antibiotics or not? we're going gf/cf starting tomorrow. and i'm suppose to call the doctor tuesday, to see what we're doing re: antibiotics. (btw, our whole family got tested for celiac's. my 2 daughters and i are a level 4- high risk. my dh is a level 2 or 3- moderate risk. and my son is a level 1- extremely low risk- although that means nothing as i know a little boy who's extremely low risk, and he cannot tolerate gluten.)

i'd say go completely gluten-free. as long as there's ANY gluten in the diet, you may not see improvement, as there's still damage being done to the lining of the intestines. besides, how would you know it's the gluten unless you give it 100%, yk? i've researched this alot, and am having my daughter go gluten-free starting tomorrow for her facial tics (which i believe is PANDAS). did you notice any improvement when you went dairy-free? we're going casein(dairy)-free with the gluten-free, as it seems to heal the gut better. then we may re-introduce the dairy in about 6 weeks. good luck hon. this is all so scary and confusing for us all. hugs...

genetically, my daughter (as well as me and my other dughter) are at a high risk of develping cd. she just started facial tics, and they're thinking it's pandas. i was going to go gf/cf with her, but was worried that then we wouldn't know if it was the gluten OR the antibiotics (which she's starting wednesday), which made her better. but after reading what you wrote, i'm thinking it may benefit her to go gf/cf anyway,. what do you think? thanks!

wow. ok. thanks guys! i called her pedi who said that she's going to review her file and discuss it with her collegues, and then get back to me on tuesday. at first she didn't agree with me, but after i talked to her about the whole thing, she absolutely agreed with me. i said "what's the worst thing that can happen if we do the round of antibiotics?" and she agreed. YEAH! i'll update after we start the antibiotics. in the meantime, if anyone has anything else to add, i'd appreciate it! thanks!

what is the protocol for PANDAS re: antibiotics? i bet if i caused enough stink, my pedi would give me the antibiotics, especially since i'm holistic, neve take my kds to doctors, unless absolutely necessary, adn NEVER give them antibiotics, unless absoltuely necessary. so my pedi KNOWS that i'm not just trying to push the antibiotics, yk? is the protocol really rigorous, or just a regular course of antibiotics? (and no, she has not been on antibiotics since last year.) oh, one more question. if the blood titers and strep test all come back negative, then how do you know it's PANDAS, and not some other thing? (i'm off to look at that website now. thanks, kayanne!) btw, thank you so much for answering my post. i'm so lost and feel so helpless. i look at my beautiful little girl and just cry b/c she's obviously suffereing, and i cannot help her. i will do everything in my power to figure this out for her. thanks guys!

Any info. would be greatly appreciated. thank you!!!! My 6yo daughter was very sick about 10 weeks ago. (no sore throat). 2 weeks later, severe separation anxiety showed up. This is a little girl who LOVED going to kindergarten, who now screamed everytime i put her on the bus, didn't wnat to be left alone, even at birthday parties anymore!!!. she said nothing happened at school, just that she didn't wnat to leave her mommy (me). About 4 weeks later, eye-blinking started. So, now she has these winking/blinking things, and a pedi opthomogist friend suggested PANDAS. all of her blood tests came back negative (throat culture- rapid and 48-72 hr.), ASO and DNA-ase titers. all negative. Guys, i REALLY think that the sickness has to do with the tics and separation anxiety. Is it possible to have negative results AND still have PANDAS? These are her blood titer results: ASO: <6 (normal is <150) DNA-ase: 60 (normal values are <60 preschool; <150 school; <85 adult)