kmom

Nancy D, My PANDAS DD and DS (and possible Lyme...appt this week w/ LLMD:))were born and raised in the Carribean and yes, Dengue Fever was always a fear of mine. Just a tip since your daughter can't use DEET. Origins has "Gardener's Spray"...a natural bug spray I hear that is good. There's also Avon Skin So Soft. One last tip, rubbing fabric softner sheets on body and clothes are helpful to keep those pesky mosquitos away. Make sure there are no puddles of water around/nearby house. The mosquitos get Dengue from drinking stagnant water. I remember when neighbors moved and pool was left not taken care of and I had to call Homeowner's Office b/c non-chlorinated pools are disasterous for Dengue Fever issues. Also, when you said above that you weren't sure if mood swings and rage were from PANDAS exacerbation or effects of IVIg on LD, did you mean that IVIg is bad if LD is a culprit? Since 1st IVIg 3 wks ago, kids were doing well, now horribly and the symptoms are so different than b/f. DD9 complains of foot pain (ranges from tingling to sharp pain), discomfort/pain/electical pulse from forearms to hands, joint pain in thumb and she said yesterday it feels as though her eyes are going to pop out of her head...weird huh? Oh,and we've had rage which we have seen in PANDAS exacerbations...hers are 1-2hr. crying meltdowns but she did describe them as feeling angry. DS6--had joint pain on and off ever since we can remember. Dr's always claimed growing pains. Last week got off bus limping. He says the ankle bone "circle part that sticks out" feels like it fall off. His frustration then rage is getting worse daily. It's so sad to watch. Playing Legos or computer game, gets frustrated, says he hates himself for being so stupid and then runs around yelling and if I try to help him, acts as though I am going to hurt him which I never have or would do. It's mind boggling. Managed to get him in epsom salt bath tonight but was a struggle. After he calmed down, he hugged and kissed me to apologize. Gosh it's wearing.

Thanks!!!

Anyone seen Dr. Braccia from Haverford Treatment Center. He has a great website and informative staff answering phone.

Thanks T.Mom. Don't feel bad mentioning Lyme, as I have been on that hunt for a few weeks now. I mean I always knew it was a possibility but from the start this strep infected child from Jan-Apr. never had a rise in titers. I could have been knocked over by a feather when Dr. T told me the results after the first titer test. She and her brother's titers never rise. But we learned about their "specific sterp immune deficiency" from Dr. B after more testing and it all made sense. Dr. B had us do Igenex testing pre IVIg. At that Sept. 30th their Igenex "appeared" negative but as I have read more, I got suspicious. (recently talked about this on the Lyme forum as a newbie) Had heard a while back that bands 41 being positive didn't matter. Both kids are ++ for 41 and indeterminite for band 39. Oh and DD is also + for 58. Lyme board members say many LLMD's would think of that a positive result when you add in the symptoms. Can't get in w/ a top LLMD until Feb and on wait list for some others but ironically found a local one and so far he seems reputable (fingers crossed). We see him mid Dec. but there's a chance one child can fill a possible opening next week. I have decided my DD gets that spot since she's worse off. Thx for allergy med idea. I stopped allergy meds after the change in season here b/c she seemed better but maybe that's adding to the mess here. She has bad allergies...esp since this started(also makes me suspicious of Lyme). The hardest part of all this are all the variables that get thrown into the mix and makes definitive answers so difficult. I need a PANDAS mood ring decoder! Thx for the help and good luck to you guys!

Thanks MichaelTampa, tpotter and Mary. Everyday I think how grateful I am to have this forum for advice. It makes the "bizzro world" I feel I live in, just a bit better b/c knowledge is power. I stopped by the local LLMD office yesterday b/c they asked me to bring in all labs thus far and the downloaded forms I filled out for their office. I think I have a permanent callus on my finger from all the forms I keep filling out. I was happily impressed by the looks of the office--VERY clean, professional front desk people, etc. The scheduler talked to me alone b/c I only have appt's for kids and since I could play a role in this too, I got myself an appt. It was for mid Dec. I reminded her that I live 2 miles away and that if an opening pops up I can be there ASAP! She then told me there's a person on the fence w/ an appt next Wed. and that she has till today at noon to decide to cancel. There's a chance I can have that appt next week. I told her if that's the case I'll move my DD to that appt. I need to choose the least functional child. So, fingers crossed, we get in next week. I said how the contamination OCD in DD is tough and with her going through a flare up (sore throat possibly linked to switching from Augmentin AND Zith to only Augmentin) she's missed school all week. She said how wonderful it is to bring the kids in while young to rule out Lyme b/c OCD runs strongly in Lyme and the stories of the OCD teenagers that come into the office are horrific. We stil have an appt w/ Dr. J in CT in Feb. and on a waitlist for Dr. H in NY and Dr. C outside of Philly but hoping this local dr. is helpful in ruling it out or treating us.

DD on Augmentin and Zithromax (simultaneously since Sept 4th '10 per her neurologist after only 1 abx wasn't making enough gains...PANDAS resulted from stubborn strep in April '10 but in Sept her Myco P elevated to 1.16). On Sept. 30th visit to Dr. B. we agreed to schedule 1st IVIg and he decided to remove the Augmentin & only give her Zith. 4 days later DD ramps up with PANDAS symptoms--sore throat, stomach ache and nose congestion. Throat pinkish/red. Local DAN dr. does rapid strep test which is neg. Chucked it off to a cold, but Dr. B agreed to add back Zith. She gets prgressively better and goes back to school part time after 3 days home sick. She is even better after IVIg on Oct. 20 and 21. Has 2+ fantastic weeks post IVIg...well fantastic to us. Contamination OCD still present along with some other symptoms but tics are gone and she's just more relaxed, happy, completely old self at school Halloween party I attended, etc. 1 wk post IVIg Dr. B discussed yanking Zith. I reluctanly agreed...I have the internal battle in my head of "I hate her on 2 abx's but scared to change ANYTHING!" I decided to at least finish the rest of Zith on hand. for the next wk. Last dose of Zith was last Tues. Nov.2nd. By Thurs.(2 days later) some mood lability. By Sat. she was a mess...depressed, discontent, irritable, weepy, separation anxiety AND sore throat and stomach ache. Called Dr. B in a panic so he added Zith back into the equation. Sun. she had swollen puffy eyelids almost like a reaction???, dark circles under eyes, sore throat, stomach ache, and by late afternoon she had a 1-2 hr. full blown crying meltdown. Monday still sore throat and stomach ache. Throat is pinkish/red. Took her to DAN dr....neg. rapid strep. (should have asked for reg. culture) DAN Dr. believes taking her off Zith wasn't good and glad Dr. B. added it back in. Mon. night full blown meltdown again Things slowly getting better as week has progressed but still sore throat and stomach ache. She also says she feels like her throat is swollen for lack of a better word. (T&A in Apr thus not swollen tonsils.) She complains of reflux a bit. Could possile strep in gut be coming up with reflux or is that a ridiculous thought? Today she seems the best she's been all wk. but still home from school which when well, she really enjoys--great student, has friends, etc. Mom's at support group last night reminded me that it's probably strep (not a viral inf.) and probably won't show up on rapid test and maybe not a reg. culture. So here's my question. Could it be that strep still harbors in body and she reinfected herself when off 1 of 2 abx for 4 days as I've seen these past 2 episodes? Was she rexposed when she was in school last week w/o Zith in her? Could it be Myco P causing re-exposure? I was thinking she was exposed to a viral inf. b/c when I asked Dr. B a while back if I should take her for strep cultures when she has a sore throat he said, "No, not right away b/c the abx should keep strep at bay. If strep lingers for 3 or more days then yes b/c maybe the abx is resistant." Then there's the other issue...I have felt a minore sore throat in the last week. I always wonder how I play a role in this since I had MAJOR strep issues growing up. Ok strep titers each time tested but Myco P IgM 4.64 in June and 4.74 in Sept. Dr's always say just means past inf. though. Anyone have any similar experiences any of this or have any advice? I feel I trust our docs but know parents have great insight to these issues.

Thank you so much for those replies and Mary, what great documents! Thanks. I read till very late last night b/c I couldn't put the material away. It's scary & I guess good how my kids fit the mold so well w/ Lyme symptoms. Might be our missing puzzle piece. I question bites from a camping trip but still think if Lyme is in the mix, it's been around a lot longer, especially for my DS. In the past 3 years been to 2 dr's for joint pain and no one ever mentioned Lyme, only arthritis and growing pains. I have a few more questions too if anyone wouldn't mind chiming in: -If I possibly have Lyme, would a flu shot aggragrate symptoms? Kids' PANDAS docs said NO shot for them but DH and me, yes. Got it last Wed. Then Thurs. evening bad thigh aches. Since then knee joint aches...nothing horrific but present. I have a high pain tolerance but wonder if sporadic joint pain over the years was exercised induced or Lyme. These currents aches are not exercised induced...need to but spend too much time w/ PANDAS kids and researching...maybe it's just aches you get as u realize your body is gettin' a little older -Kids' PANDAS neuro & immuno dr's didn't seem to care that my Myco P titers were 4.64 in June and 4.74 in Sept. It was IgM (I think). Said it meant previous infection. Will that matter to an LLMD you think? -Off to the local LLMD.(Used to be 30 min away but ironically moved into my town a few months ago.) Receptionist said paperwork dropped off b/f Dec. 16th appt is greatly appreciated and to come by. Is there any way to ask if anyone recommends this LLMD? He's only $300 for evaluation...I say only b/c b/w the PANDAS appt's and tests and the fees for the other "Godfathers/mothers of Lyme" evaluations, this seems cheap. I just want answers from a good LLMD. Are we allowed to post dr. names? I'm new to the Lyme talks but notice it's taboo on some websites. Thanks again!

Dealing w/ PANDAS with my DD9 and DS6 since May. DD started w/ PANDAS suddenly. Just when I thought things couldn't get any worse, DS started up 3 wks after DD's dx. It's been quite a journey to say the least and just looking for some Lyme advice as I question it daily now. -Both kids=low titers always but positive strep cultures last winter/spring. -Dr. B found specific strep immuno def. Abx therapy since May (tried a few different ones and as of Sept 4th till present found Augmentin and Azith simultaneously worked best). -Had 1st hdIVIg 3 wks ago. DD had been doing well since IVIg till last week when Dr. B said yank the Azit Tues. night. Fri. PM she was quiet and inward and Sat. AM woke up w/ mood lability, severe social anxiety and just off. She complained of a sore throat and stomach ache but no fever, no pus in throat (T&A surgery last April so no pus on tonsils) but still a pinkish/red throat. Upset by backslide, so I called Dr. B's office and he said get back on Azith. -Sun. AM-DD had swollen eyelids w/ a hive or 2 and gray dark circles under eyes. I knew what was coming. That afternoon a 1-2 hr. crying meltdown w/ vocal tics as she cried and jumpy random movements...ugh, I can't express in words how much I hate to watch that even tho I knew it was coming. -DS seemed affected by pulling Azith from Rx regimen to w/ more rage than normal but no throat or stomach complaints. Mon.-DD neg. rapid strep and same type meltdown by 4pm Would think DD was just exposed to a virus/bacteria but same thing happened 5 wks. ago when Dr. B yanked Augmentin from the mix. Both kids fell apart. So confused. Both kids' Igenex "appears" neg. altho some events cause me to believe Lyme is a possibility (camping trip Aug. '09 both kids had strange looking flea-like bites all over trunk of body about 24 hrs. after returning home). Thus have an appt w/ CT LLMD (never know if name dropping is legal!) in Feb so far away! And wait listed for 2 other good ones in NY and Philly. But,just found another LLMD who is local for Dec. 16th appt. Here are the Igenex scores from Aug. 30th 2010: DD: IgM=41+, 58+ IgG=39 IND, 41++ DS: IgM=41 IND IgG=39 IND, 41++ Dr. B was happy they were neg! I've heard band 41 means nothing. Do the others mean anything? The local LLMD receptionist told me that people need to be tested multiple times b/c Lyme bacteria is very different from other bacteria and HIV where it doesn't just hang out in the bloodstream always but in the brain tissue so it's so complicated. It's so hard to go off of anything but your gut and just take the time to rule it out even more. Any advice is gladly welcome! Do I just need to be patient and let PANDAS treatment (abx and more IVIg's) take it course?

Good plan! I'll go do that. Don't know where I'd be w/o this forum and all of u! Do you think the docs we all rant and rave about for helping our children would be willing to donate? Lord knows they make pretty pennies!

Do you have any hotel points? We first stayed at The Marriot Hotel in Stamford for free on points. The last time we used points for The Holiday Inn...didn't have enough for the 2 nts we were there for IVIG but using the points we had cut it down to $60/nt. Oh and Dr. B has a special deal with a hotel nearby. It's $84/nt. I have the info in a folder downstairs. I'm in bed but if u want it I can get u the info. Other moms use Hotwire.com for good deals. Good luck. He's great!

Welcome! Just know you are not crazy and you know your child better than any doctor who meets with them for a matter of minutes and scoffs at a PANDAS diagnosis. And, there are doctors out there willing to help and who will completely understand. Problem is, you have to get in touch with those doctors who devote their time to treating PANDAS kids, otherwise you will have doctors who look at you like you are nuts. The nice thing about this forum is that people will help get you to the good docs who can help you. To get to see your "real daughter" while on Zithromax is huge. Unfortunately, PANDAS isn't as clear cut from one child to the next. If I stuck with one opinion from a book I read where your child needs high titers, I don't know where I'd be right now. Both of my kids have extremely low titers but my DD had stubborn a strep infection for months (positive strep cultures on record) b/f PANDAS symptoms and my DS never had a strep inf. but many sinus inf's and also tested positive on culture when we tested family--dr. figured he was a carrier b/c asymptomatic for strep throat but he did have a sinus inf. around time we tested the whole family with a throat culture. So I think DS's sinus inf. were the culprit for his PANDAS issues. I always knew the smell on his breath. It irked me when we moved just over a year ago and the ped. would say, "It's a virus/cold." Then I'd always be back a week later saying, it's worse and he'd finally Rx an abx. It was like pulling teeth. I think we always kept PANDAS in check for him earlier on b/c the ped where we used to live always gave him Zithromax when he suspected a sinus inf. So in hindsight the PANDAS symptoms--ODD, OCD, joint and stomach pain were never constant and we just thought of him as our child who gave us a run for our money at times b/c sometimes (now I realize after Zithro for sinus issues or prednisone for croup) he was happy, kind little boy. There are so many variables to think of when I try to put pieces together from the last year...moving to a colder climate, H1N1 vaccine last year (all 3 PANDAS docs wonder how that played a role in this), new ped not willing to Rx an abx easily so strep lingered longer, etc. I am not sure where you are located but if not w/in a reasonable distance to a top PANDAS doc, you can always have a phone consult with one of them to get the ball rolling and get long term abx. It's not cheap but boy it's refreshing to see a positive change in your child. Our PANDAS specialists have not only dx'd PANDAS but realized the children have a specific immuno deficiency to strep. The goal in the long run is to minimize PANDAS symptoms and build them a more robust immune system with IVIg treatments. Best of luck on your journey!

Thanks everyone for all the good advice. Just so amazing how hard we all have to fight to get our answers, but so worth it. My kids have negative Igenex Lyme and co-inf results but all this nonsense w/ the strep/PANDAS started witin 6 months of returning from camping in Poconos and both kids came home with a ridiculous amount of strange bites on the trunk of their body....no where else on body. I have a picture of the bites and it haunts me every time I look at it so I have an appt in Feb w/ Dr. Jones (fingers crossed I get called b/f then)and also on a wait list w/ Dr. Corson and Dr. Horowitz. I just need LLMD's opinion to rest easier that what I am doing is the best possible treatment. What's the point of multiple IVIG's IF there's another infection lurking. Thanks JAG 10--I am all in favor of T & A for my DS. DD had it done in April. I as a child had major strep issues--Scarlet Fever at age 3, strep all thru grade school to the point I missed a ton of school 2nd grade. And I cried the day I put 2 and 2 together about DD's PANDAS (dx'd b/f DS) b/c I know as a child I had it but never had a name for it...not as severe as my kids. I managed it. But I had the separation anxiety, general anxiety and OCD. My mom always thought I was just shy and super attached. We chucked the anxiety off to me striving to be the good student I was and I was the "worry wart" child where my sister was the one my parents had to stay on top of, less responsible type back then. I hid the OCD amazingly well. My sister recognized it but my parents didn't. When she'd make fun of me or question it, I'd act like she was crazy! This whole process has been eye opening to my mother. We're all so close but she's shocked she never noticed the OCD. She feels terrible....not like much would have been done back then. It was an evenness type of OCD. My sis to this day can describe it well and I remember the details vividly. Interestingly enough, I didn't get my tonsils out till my teens and never put the connetion together about how the PANDAS symptoms diminished. In hindsight, I swear it's b/c the bacterial host was removed. So when Dr. B said to get DS a T & A, I had to agree whole-heartedly. Hoping that becomes a reality soon! BTW, even though I wasn't a severe PANDAS case, I'm living proof you can overcome this and lead a very normal life! Also--quick question on the lice tidbit above. My kids never had lice till this past winter...My DD's best friend got strep--2 days later the start of stubborn strep inf in my DD. Soon after, same best friend also had issues with stubborn lice last school year, most likely was one who passed it onto DD and it was difficult to get rid of and I did everything imaginable b/c I was freaked! Is there any correlation between PANDAS and lice?

I think you are on the right track thinking multiple IVIG's are needed. My kids have only had one but the nurse rescheduled us for the 2nd one 8 wks after the 1st one. My mom was with us and asked if there's a chance they won't need a 2nd IVIG. The nurse said that pretty much nowadays it's 2 right off the bat and then after just wait and see. When I spoke to Dr. B, he said to check in at week #4 post IVIG to let them know how things are going with the kids and by week #7 post IVIG if things are not 95% better, IVIG #2 is a must. I asked him if the OCD for DD (not so much better but she has learned to manage it better) is just a habit and needs behavioral therapy to combat it. He said, "No! The auto immune antibodies are causing the OCD and until that is addressed and "fixed" with IVIG, the OCD will not go away." He was very certain and firm on this. He was also reassuring that will win this battle but it just takes time which is comforting to keep up the good fight. From what I understand, he thinks she's past the bacterial/infection level and it's the immune system level we are tackling. Is there strep harboring in her body??? Is it that my DS still has tonsils/adenoids and was our carrier and then too came down with PANDAS or as Dr. B. thinks and I tend to agree, my DS has had a lower level chronic state of PANDAS since he was little--quite possibly and he's the one not allowing DD to get to "remission" level as quickly nor himself??? I don't know. But that's why we're fighting to get his T's & A's removed ASAP. BTW, got appt w/ Dr. X on Monday!!! Yippee! Said I found him from my insurance dr. list. You think he's a good surgeon/good hospital?!?!

Thanks for you answer. It makes total sense. I'm so happy you are on the right road!

Wow! JAG 10, thanks! That's the timing I am looking for! Mums the word!

Good for you! Your are in good hands. Go with a good list of questions b/c it's so easy to forget them when u are in the moment of talking to him. Even with my list, I find I can forget one or two if we get sidetracked in another direction. Dr. B will answer them all. I always feel more at ease after seeing or talking to him. Just wondering, is the ocd therapy helping? I asked Dr. B the other day 1 wk. post IVIG if my DD who still deals with OCD should go back to the behavior therapist we saw 2x in the beginning of all this. He told me that the OCD will diminish with IVIG and abx therapy. He feels if OCD is still an issue 8 wks post IVIG, we do another IVIG and that behavior therapy won't help. I thought I read a while back that it's a mix of beh. therapy and IVIG and/or abx. Best of luck!

Thank you all for your posts and PM's. We had our appt with the CHOP ENT today. I went in armed with all the test results and a letter from Dr. B recommending the procedure and the official dx of PANDAS. I actually felt a little optimistic due to the fact that CHOP was originally not seeing us until Dec. 17th but the after explaining the situation the nurse opted to bump us up and got us in w/in days of calling. I thought that was a good sign! NOT the case. As my kids would say, the appt. went over like a "toot in church!--not good!"--sorry but that is the nicest way to explain how I felt afterward. I must be spoiled by the compassionate PANDAS docs we've been blessed to work with b/c this guy was your typical arrogant dr. who wouldn't bend. And I understand he has his beliefs and rules on how he practices medicine but he by no means was going to do it in a nice way. He said said, "The NIH does not recommend a T & A for the treatment of PANDAS so I will not agree to do the surgery for that reason." I told him how I understand PANDAS is a controversial dx and he said, "No it's not controversial." That pushed my mother bear buttons. I let him talk but at the end I told him, "Well what I mean when I say PANDAS is controverisal is this: CHOP neurology wants to hand out Zoloft when you come in with PANDAS symptoms and ironically your psych dept who originally dx'd my DD actually didn't go that route which was shocking...thought it would be the other way around but that Dr. believed in the infectious cause for this to pop up overnight. So how do you have different dept's under the same umbrella of such a great reputation NOT agree on treatment!? As the mom of 2 PANDAS kids, sounds pretty controversial to me." He was finally speechless for just a moment, lost a bit of his arrogance and said, "Well I understand why you feel that way but PANDAS is a rare autoimmune disorder." In the end he said if there is another reason to deem the T & A medcially necessary, he'll do the surgery but PANDAS isn't one of them. So he signed my DS up for a sleep study at the hospital. (Great, one more hoop to jump thru!) If the study shows sleep distrubances, etc. he can do it. I asked if he'll do both T & A or just A and he said, "Let's just wait till after the study and talk." And I said to myself, "Only if I'm desperate buddy." There's gotta be another ENT out there w/ a better bedside manner and who is more willing to help. Sorry for the the wordy story...just need to vent.

Please don't give up. My kids had positive strep cultures and very low titers always. I believe seeing or at least consulting on the phone with a PANDAS specialist is key. It scares me to think where my kids would be without them. If you have any questions, feel free to PM (email) me!

A little background...DD8-stubborn strep throat from Jan-Mar. 2010. March--family tested. DS + culture=carrier thus tx'd w/ Amox to clear inf. ENT removes DD's tonsils, adenoids and puts in 2nd set of tubes in ears due to double ear inf. and fluid filled ears added to issues. No signs of PANDAS up to this point. ENT does NOT give DD prophylactic abx for surgery (we had no clue) and BOOM, day after surgery mood lability kicks in and 4 wks post surgery, facial/hand tics and OCD and many other PANDAS symptoms kick in within a 2 day period. So bizarre! CHOP psychiatry dx's DD w/ PANDAS but move on to other dr's b/c CHOP too casual about tx. 2 wks. later DS starts to show PANDAS major symptoms. Both kids do not show a rise in titers EVER. Dr. T treats both kids all summer w/ abx and motrin w/ some improvment but not nearly enough. Testing proves immuno deficiency. We start seeing Dr. B. More testing. In the meantime, school starts and kids re-exposed and it's rough. Prednisone given w/results and wait on ins. to apporve IVIg. IVIg went well last week. Seeing improvements! After ph. consult w/ Dr. B yesterday, he says time for DS to have T & A. Great idea in my book BUT will an ENT just do the surgery for PANDAS? Any experience with this? I feel like it's going to be a fight. Called CHOP ENT dept. and set us up for Dec. 17th consultation. I explained situation and said need to be put on cancelation list b/c next IVIg is in Dec. and want to push for surgery b/f 2nd IVIg. Super accomodating. Passed message to nurse and was called within the hour. Bumped us up to this Tues! So worried this will be a waste of time since CHOP,altho the best in Children's Hosp. in country for ENT and other specialties, they are divided on PANDAS Dx. It comes down to dept. and specific doctors. Anyone have experience w/ this or any advice. DS has a strong history of sinus and ear inf. but never a strep throat inf....just carrier status. Also Dr. B. thinks (so do DH and I) that DS has had PANDAS much longer...a more chronic low lying state than DD whose acute symptoms popped up this year. Any advice greatly appreciated!

I thought I had read of a few kids in the past that had a hiccup tic. What a shame if that was the case and went un-dx'ed this long.

Yes! My mom and I just saw it on Today Show and said...PANDAS!

I bought the toothbrush sanitizer pods too! But after researching all the environmental triggers to neuropsych issues and trying to become more green, I get worried if it's a good or bad thing too!

My dd missed a lot of school after first exacerbation at the end of the last school year. There was only a month of school left and I talked with the school nurse and her teacher at the time and they were understanding. I had a doctor's note and that makes things much easier. Learning more about PANDAS over the summer and fearful she'd miss more school days, I called the principal a week b/f school started and asked to have a meeting with important school figures to explain more about the disorder, inform them of upcoming IVIg treatment and just to have on record that this was all happening...kind of a forewarning of what to expect. A week later, my dh, dd (she insisted on going which I thought was great) and I got together for a meeting where we met with the principal, school nurse, dd's classroom teacher, counselor and support teacher (not that my dd ever had a support teacher, nor does she now but she's the one who schedules these types of meetings and I thought it was good she attended). I told them that they can see from dd's grades and state standardize testing (which she took at the start of 1st exacerbation and surprisingly scored high) that she's an excellent student and that I'd do everything possible to make sure she stays on track with school work even with missed days. I also asked them if they would provide a home bound tutor after IVIg IF she went backwards before getting better. I also explained I was a teacher and was more than willing to do the job...just wasn't sure of their rules on missed school and if a tutor from district was required. Before the meeting, I emailed each of them info about PANDAS...one to make the meeting shorter b/c I could talk all day about it and two b/c I wasn't sure I'd get it all out without crying. I asked them to work with me to make 4th grade go as smoothly as possible for dd and I couldn't have asked for them to be more receptive and helpful. I think talking to the school ASAP is your best bet. From what I know, my children are the first diagnosed PANDAS cases in the school...that's not to say there aren't misdiagnosed PANDAS children in the school. I know of 1 boy in particular in my dd's class who sporactically in the past year has had high anxiety, stomachaches, etc. I have heard a few stories of how the parents bully him going to school by threating they'll call the police and it literally infuriates me to the point I feel sick. I mentioned to the guidance counselor in a nice way that the school needs to get educated b/c this isn't as uncommon as we may think and no child or family should ever suffer with this when there are answers and help. I'm not saying all neuropsych problems have an infectious trigger but gosh, I wish every parent had the info so they could start w/ PITAND/PANDAS and go from there. So my advice is talk to the counselor or principal at school. They may make accomodations that are very helpful.

Are you using colloidal silver, GSE and/or OLE in addition to abx or in place of? How long did it take to see gains?

I'm usually on the PANDAS/PITAND forum but after some thinking had some questions for the Lyme parents. Do any of you know if elevated prolactin level is a symptom of Lyme? Also, if child was on abx for 6+ months for PANDAS dx, would Igenex results cause a false negative?