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I am still trying to figure out how my dd5 had a sinus infection, that was apparently there for a while, and had no symptoms. no fever, boogies, headache, stuffiness, nothing. she hasent even had a cold in a long time. i am so confused. any ideas?

smartyjones, I am so sorry about the guidance counselor issue. We had the same problem, but concerning the nurse too. they all thought she was "manipulating" them to let her call me, and sometimes come home. I held my ground, re-iterating her situation, that she is 100% NOT manipulative, and that sometimes she is really NOT ok and has to come home. I also mentioned that when things are bad she doesnt trust anyone at school to talk to, because she felt like they were all trying to punish her for being sick. Eventually they (were sick of dealing with me?)and decided to listen to my suggestions to "see what happens". They clearly thought all this would be a pattern that got worse and worse, but i was right and they were wrong. Now things arent so bad anymore. (granted dd is doing way better in school now, but it was slow progress over a year or so) good luck.

yes, we had very similar experience with both of dd's ivig's. they helped greatly, but then she would go downhill again. so, no ivig's for now at least. i am worried about herxing, hope it is not too much of a nightmare! thanks dan

so dd10's results came back, clearly positive for lyme and bartonella. switching abx for a while, before considering more ivig. little sis came along for the ride, and doc took her on as patient also, giving lab orders (for lyme and co infections), and finding a sinus infection! thanks all, for drilling about infections, we found them. what a day! dan

So, our health ins. is really pretty aweful to us (as most are I suppose). we have to fight and appeal EVERYTHING. We have seen all the doctors that are in-network just to satisfy them, and they still treat me terrible. Now they just try to pass me off to someone else, confuse me by making no sense, or "disconnecting" me. I am thinking that maybe I will abandon private health care, enroll in state health care. and with the premiums we no longer have to pay (almost 2 grand a month) we could use that to pay out of pocket for the doctors and treatment we need (which we already do sometimes). Then we would not have to fight,or worry about being denied. However, it would be hard if the bills end up being more than the yearly premium we have always struggled to pay. we were reimbursed for one ivig, but it took so long, and i dont know yet if they will do the same for the second one dd had. They woundnt approve seeing the doc who gave the ivig, and they wont approve seeing the new doc we are seeing that is closer to us. I am so tired of them taking so much money, and then doing all they can to prevent dd from getting better. Can anyone share their experience, you can p.m. me if you like. (we need a revolution, but how can a bunch of tired parents going though ###### start one?) thanks, Dan

FASCINATING!!! thanks so much for sharing that. did anyone ever think that this nasty bug has been around that long? maybe it was here long before us.

Hey P. mom, who you callin a man? You know, I get too caught up, and then my family gets mad, so I have to post and leave. anyway dan is short for danielle! thanks for making me smile dan(ielle)

thanks everyone for the 5 pages! wow, usually my posts only get a few responses. anyway, guys, i believe that both pandas and lyme are horrible, neither should ever be ignored or underestimated, and neither are fully understood. i see some have no lyme, but, you all have good points, actually i did not read ALL the posts, it was too much! how about this: lets all try to find the miracle of being happy, despite our children or ourselves having illness. i will let you know if i find anything (besides patting my old dog). hope everyone has a good moment or 2 today! thanks, dan.

Thanks everyone, The main reasons for doing the igenex tests are that she is not 100% after 2 hd ivig's, and..............i have chronic lyme. Judging by my own experience, I feel she might not have it. She doesnt have any herxing when she takes antibiotics, what else? um, we did see big improvement with ivig, original symptoms were directly connected to strep. I know that it will never truely be ruled out in my mind. I can blame anything on lyme (it annoys my family).

I will get dd10's results any day now. So many have tested positive, but I was wondering if any pandas/pans children have come back negative for lyme and all co-infections (thru igenex)? I guess I am trying to keep my hopes up. I figure everyone on the lyme board was positive, so better to post here.... thanks

maybe i will ask for a trial of augmentin to see how she responds. do you think one month of it would be enough to observe? and what would be a good strong dose for a 30 lb. kid? 500mg a day? thanks all

i have had a couple 6 month rounds of tetracycline. the first round, i was fine with it, took it on an empty stomach as directed, and ate 20 min later. but the second round i had to eat with it, and a certain ammount, or certain foods. now and then i would throw it up, and try to figure out if it was what i ate or if it was the timing. it was not a consistent thing, hard to figure out. poor dd, good luck.

thanks i will look into those!

My dd10 went undiagnosed because of moderate symptoms for a couple years. then it hit hard, she had ALL the symptoms, and high titers. she has now had a couple ivig's and has had good improvement. it was obvious she had pandas though. now dd5 had strep in may, we are seeing major meltdowns, some ocd and other little things that give me worry. her titers are normal, d naseb - 70 aso- 55. i am not sure where to go from here. i am hoping that those of you whose children do not show a titer response can chime in and give me some guidance as to what i should do now. i am not positive it is pandas yet, but i want to clobber it if it is. (i dont want my other child's chilhood taken away too) thanks for any help or info, dan

if he is on the south shore, dr. sam donta is a lyme doc in falmouth. i think he is good.

Hi, I am so sorry your daughter is going through this. About a year an a half ago when my daughter was in severe exacerbation, her psychiatrist wanted her to go to franciscans, and it was all set up. He said the staff was wonderful, and he would trust them with his own kids. I cancelled 2 hours before we were to take her. Parents are only allowed during "visiting hours". My daughter was 8 at the time and had never slept without me, her dad, or her grandpartents. Never had a sleepover. I could not imagine her, with her severe fears, and anxiety having to go to sleep in a strange place with strange people. When I voiced my concern, they were very short, you know "rules are rules". (maybe i should not say this, but to me it was like...lets see how long it takes for the "breakdown". then they can see what they are up against and try meds to help) However, franciscans is known for being a good place, you just have to look carefully at the rules, and schedules, and see if it would be a good fit. on another note : after i refused franciscan's, they found another psych hosp (short term eval) where I could stay the whole time. I should not have taken her, we arrived at 2am, and i spent the night awake thinking of how i could explain it was not right for her. i was not allowed to take her home without the approval of the doc, which i had to wait for as he was doing his rounds in the morning. nightmare, but he agreed with me, it was not the right place, there were no othere kids like her there. the other kids scared her terribly. (she still has bad thoughts about it occasionally. it was like one insanely massive exposure to all her fears. seriously there were so many wierd cooincidinces i cant explain). if only i had known, i think you can leave "against medical advice", you just have to sign the papers for it. after that we persued ivig, (and prophylactic abx) it has helped a lot, not magic though. she had a second 7 months later, and you never know we may do a third someday. i dont mean to be negative, but you have to really examine the facility, and there routines to see what is right. i went in blind, thinking maybe they would even advocate for ivig (honestly how stupid of me?) BUT if it is a good fit, it could be great opportunity. good luck

I give my dd10 traumeel when stressful things are going on, and I myself take it sometimes. I give about 10 little shakes into her juice in the morning and then the same in her water for school. I think it helps her with anxiety. (But there are times where I believe NOTHING will help). I am not sure exactly how it is supposed to work. I take it and I dont feel worse in any way (i have lyme). I had tried rescue remedy first, but did not see any help from that, so our acupuncturist said to try the traumeel. I like it because I feel safe giving it to her. good luck

at the time when dd was in major exaceration, mri was fine, eeg fine, brain spect showed some abnormal something or other. glad we had them though, to get it overwith.

raising PANDAS children is exhausting in itself, but I find something in your post very familiar. Have you been tested for lyme? (I know there is lots of lyme lyme lyme on here) BUT........I struggled since childhood with "moods" as we called them, or tired and sick "spells" as you said. They called it fibromyalgia....then after i had my second kid, i was soooo tired it was not ok, napping a lot, could barely drive sometimes etc.. i kept going back to the doc, and finally she tested me for lyme and it was positive. the physical "trauma" of birth activated it. anyway, thought i'd share just in case. good luck

Hi everyone, I know this is a long shot, but.. Does anyone know of a good pediatrician in the boston area? I dont necessarily need one that is a pandas expert, just one that is supportive of pandas, and willing to consult with pandas specialists (the big guys like k b l t), just to have a basic knowlege of what is going on. After 2 years of madness, and doing it all myself (as most of you here do), our ped. is just now showing concern (when things are getting better!), and pushing psych meds as treatment. Been there done that. thanks, Dan

i have been taking dd9to acupuncture for almost 2 years now. we started before we had a diagnosis and i was desperate to find something to help her. she likes it very much, and she really does relax for the 40 or so minutes she is there. sometimes the next couple days are a bit more calm, sometimes not. i dont see any big change in her ocd from it, but maybe a little less anxiety sometimes. my feeling is that it is worth it if she likes it, and she gets a bit of peace, and it cant hurt.

nice addition to the topic fuelforall......lets adjust it from a mom/dad thing to a primary/non-primary pandas caregiver thing! (does that make any sense? i am tired.)

wow thanks for posting this topic. i was always afraid to post about dh. again,I see that I AM NOT ALONE! i will never understand the whole grown man vs. sick child. i see it too often, loathe it. and not stepping in when the other parent is dealing with a situation? ahhhh, sometimes I have to step in, because it is going so wrong, and so mishandled. i could go on and on, but i will just say thanks again guys!

Hi Wilma, My dd9 was on lamictal and seroquel also. She went off of the lamictal before she had ivig because i did not think it was doing anything, but stayed on the seroquel. one month after ivig, she was doing so well (no more rages) we took her off the seroquel. she is not 100%, but she is in a much better place mentally, and she is not on any psych. meds anymore. ivig is not for everyone, and i was terrified at first, but i am glad she had it, (and actually i am thinking about another one to see if we can get her feeling even closer to her old self). good luck, dan

I have a couple questions and I cant find the old posts to answer them, how long after a strep infection does it take for the aso rise? and same for the dnase b? also, a non-pandas child will still show elevated titers after having strep right, maybe just not as high? thanks!