ajcire

Great News!! I hope this is the answer for him!

Best of luck!!

I wish it wasn't so expensive to test. I at this point would not be one bit surprised to find my 5 year old dd and my 2 1/2 year old son with high scores either... my 7 year olds was 141.. I so hope that one day in a not so distant future this becomes easy and cost effective to test... and of course hope that the test does conclusively show what it is supposed to be showing. Hugs to you as you try to manage your way through all this.

I really never thought of it from a pandas point till just now... My ds's tics that I know of are his eye blink and throat clearing..both gone right now.. but he has always been that kid who has to make noises (at home.. really not out or at school)... he incooporates it into his play so I just assumed he was just making irritating noises while he plays.. changes his voice in a silly way that stuff but it he really makes it a form of play.. I find myself telling him all the time to stop the noises.... which is why it just hit me that maybe this is something he's just doing and then when I draw his attention to it he is aware.. Meaning, if I ask him if he is making a noise on purpose or not he will say yes... he is. but could that be because if he is just doing it he figures he is choosing to? Doesn't really get the question? He's 7. He has always been a kid who claps his hands loud and fast if he gets really angry or frustrated at us or his siblings.. not at anyone else... but maybe we are the only ones who make him mad He used to beat his chest when mad or hit his head.. still sometimes hits his legs... It's not something that is a big deal just something that drives me nuts when he does it.. meaning nobody but me is seeing it or paying attention to it... he doesn't do it out.. I used to think it was just his way to vent anger without hitting someone else... Is this likely related to pandas or just personality/maybe sensory? While I am at it... sometimes he holds his hands funny... I can't think of a polite way to describe it but I imagine that others see it and think it is weird.. he does do that out sometimes.... not just totally out of the blue that he does it but it will be when he is responding to something... he makes it seem like it's his way of being silly but the more attention I pay.. OK. he just blurted out Woo Woo woo while playing with is little brother.. I asked why and he said, I just felt like it. I love making noises. That wasn't helpful.

I don't know. I think if I could go back and put her on high dose Zith prior to and a long time after, maybe it would have gone smoother. She was on omnicef for 21 days prior (but I don't know how high a dose), then a regular course of amoxicillan after. The real problem was that we were so sure that the T & A took care of the strep, and nobody wanted to swab a healing throat (ouch!). So when she started going down hill...we didn't think it could be strep causing it. The only PANDAS info we had back then was the NIMH site. I think we hadn't done the T & A, I'd still be wondering if we should have, and thinking that I should have given my daughter that chance of getting better. I made the best decision I could, based on the information I had, which is pretty much all any of us can do. I agree.. you are darned if you do, darned if you don't. I am trying to think about what I would do if I didn't know this pandas stuff.. since this is for my supposedly non pandas dd. I would probably go with the recommendation and do it with the hopes of solving her sore throats/strep episodes.... I keep thinking it must work for a large percentage of people with frequent strep or they wouldn't even bother right? Then I get worried.. if we do this for my daughter but it's really my pandas ds who is infecting her (he gets positive cultures without the sore throat) then maybe I am treating the wrong one. I have no idea anymore. I am almost positive we will do it for my dd... and that I will be calling the person next week who does the scheduling for it... I need to research what she should be on prior and then after I guess... in case I am right and she is leaning towards pandas. The ENT was open to the pre antibiotics even though he said he usually only did during and after.

Peg, if you could do it over would you have not done it? I need a crystal ball quote name='peglem' date='Jan 21 2010, 08:14 AM' post='52819'] My daughter has continued to be a carrier of strep even after T & A.

It let me in... do you think I need to do it again? I was kidding but you think it's a problem? Maybe they will think it's good if we are there, that they can convert me to thinking it's all in my head. Do it again and put in child with tourette syndrome

Hmm.. when it asked "who I was" and it put other... I put a parent of a child with Pandas.... maybe I should have left that out... wonder if they boot me out

My ds can verbalize with his throat clearing tic that he doesn't know why he does it.. it's not to clear something from his throat.. he doesn't even know he blinks his eyes funny.... He is always making noises but it seems like it's intentional... he turns it into playing.. I am wondering if it's something he does.. he has no idea why so he than makes it into silly.. if that makes sense.. He has always been big on hand clapping which makes me crazy.. wonder if that is something related to this whole thing?? He does it when he is frustrated though... so it doesn't seem to be... if his sister bugs him he claps his hands loud and fast like it's going to make her disappear

I don't know.... even with the washing... I just need my own toothbrush and wouldn't let my kids share theirs..... I know it makes no sense since we use forks and other silverware that we then use the dishwasher for.... but nope.... toothbrushes are just too personal for me.... lol.. probably just my own issues.

I could be wrong here but I am guessing she means a second dd, not her 2 year old dd... at least that was how I read it. Regarding why we would be doing the Tonsils and adenoids... My daughter (almost 6 yrs old) has had an excessive amount of positive strep cultures with sore throat symptoms as well as sore throats without being positive. She has NOT been diagnosed pandas but I have some definite concerns about pandas with her. I did not take her to the ENT because of that though.. I actually didn't take her even just because of my pandas ds. One of the pediatrician's I had seen suggested it based on the frequent strep. Knowing what I know from all you guys though I am definitely suspcisous that her unexplained tummyaches for the past year connected to the strep but my peds don't really by my theory. When I asked the ENT if it is what he was recommending I do he was careful with his words but said that she definitely meets the criteria which makes it easy for him and that the benefits outweigh the risks in her situation. I am waiting for results still on strep titers I had run on her a week and a half ago... her titers were 120 in early december (not sure why I did them again now but the dr. I see for my pandas ds suggested I do it) but she had strep in september and Nov. 1 so from my understanding her titers should have been high from the strep in Sept? My pandas son's titers in November were 480 but he too had a positive culture in Sept. I spoke to the ENT regarding my pandas ds (7 1/2 years old) because he cultures positive for strep but without sore throats.. he gets the mild tics and wonky behavior instead.... I just want to see if he sees anything going on that can shed light on this. He has always had the dark circles under his eyes as well.... His voice is not nasaly like my dd's so I never suspected enlarged adenoids but who knows.. This might be a total long shot taking him but I figure it can't hurt. We do not know if my dd is the one infecting my pandas ds or if he is infecting her since we don't always catch when he has it until she has it. I always thought she was giving it to him.. until it was suggested that it could be the other way.... BUT she has still tested positive a few times that he hasn't... so she clearly seems to get it easily. I didn't schedule my dd's surgery yet because the appt was just yesterday and I first had to talk it over with my dh and then want to get my son in first to be seen on the off chance that it is recommended that he too have it done... we need to decide if it's best to do them at the same time or not... Anyone have this done for 2 kids at the same time? We have decided to definitely proceed with this for my daughter. Now I just read what you wrote Peglem and honestly that scares me a lot! What if I open the floodgate to my daughter. I don't know anymore what's right. The ENT did warn us that she could still get strep throat... since it's not tonsilitis we are dealing with that removing tonsils doesn't necessarily eliminate the strep.. ack.. I worry that she is on the verge of pandas and that the tonsils out will now mess with it... grrr... The ENT said the adenoids were just standard to remove at the same time... do they always do that?

GASP!! I thought I was the only one ... now I find out that you are cheating on me with half the board Come on Faith, I'm your favorite though right? Clear all their messages

I went today with my dd... he said she meets all requirements for the tonsil and adenoids being removed.. I had an interesting conversation with him regarding everything... He was completely unfamiliar with pandas but very open to the idea of it... I was very sad that ENTs who see kids for too much strep all the time are not familiar with it... If he didn't believe in it but had heard of it that would have been less upsetting.... He had his computer and did a search and as soon as it came up he said it was very interesting to him.. that he had an adult come in for her tonsils out who had ocd and she had binders and binders of info regarding strep and ocd.. but never did she use the word pandas I guess.. maybe because she is an adult... he told her to call and let him know if it helped any (she must have said this is why she wanted it) and he said she never called.. but she was so ocd about it that her not calling could have been a good sign that maybe she wasn't so ocd about it still That said the nurse or whoever the person who first talked to us at the ENT was asking questions and I mentioned my pandas ds who was not with me... she had not heard the term pandas but when I talked about his throat clearing tic she said WAIT we had a child come in for frequent strep and who kept clearing his throat but we couldn't find a medical reason... I think she had a total lightbulb moment about some patients of theirs and I felt good that they were a bit intrigued. I will be taking my ds in to be checked soon.. OH and when I asked if he would put my dd on prophylactic antibiotics before he said just to remind him prior because he usually only does that for after surgery but he understood why..phew.. AND even though he had not heard of pandas he said that he definitely thinks her constant tummyaches could be connected and that he has had parents report to him that their kids tummyaches were better after.... CROSSING MY FINGERS... Of course he said that this doesn't mean she can't still get strep but that the benefits outweight the risks for her to have it done... Another interesting thing was that my dd's tonsils are pretty small.. he actually said that is quite common for kids who get strep and throat infections and that once out we might see they are just flattened.. he also said that her pain tolerance for it is probably so high because of the frequency which is why when I got strep I was in such pain and she just says once that her throat hurts and then goes on her merry way. He said she has likely just gotten used to it. He didn't scope her adenoids.. said that it is standard to take them out too... My son will need to be scoped though since not sure his tonsils coming out is going to be a clear cut decision... .. he won't be a happy camper.

I was talking to a friend about my non pandas dd and taking her to an ENT... she was telling me about her kids (not pandas) and that one of them had swollen adenoids that went down after 3 weeks of antibiotics at the ENT's direction... she told me it was the cause of the dark circles under the eyes.. I told her my dr. said that was an allergy look and she said yeah, that if it's not allergies it's often adenoids..... I never would have guessed my pandas ds for an adenoid issue but it got me wondering... he gets no sore throats with his strep so I hadn't thought to take him (well until reading Faith's post on ENT) ... I am going to make an appt for him today hopefully .. hoping this ENT gets what I am talking about when It talk to him today at my dd's appt... Just food for thought...I know a lot of us here have kids with those dark circles... curious if your kids also have adenoid issues that you know of?

You inspired me to make the appt and I now have one for her tomorrow... called the ped to get her strep history.. Feb 2008 August 2008 December 2008 September 2009 November 1 2009 January 2009 So it doesn't quite fit my pediatricians guideline of 6 times in a season but it sure seems like a lot to me... Interesting vickie on the speech stuff.. my dd got speech for articulation... now she doesn't qualify but she always sounds mumbly and whiny... of course that could just be because she is a girl

My dd does too.. I am taking her in to the ent (she's supposdedly my non pandas dd) because she gets strep with sore throat all the time... 2 speech therapists told me her nasaly voice sounds like it's enlarged adenoids.... I think I yell at her for whining when it's just her voice

Vickie, surprisingly the date on it is June 2009. It was the first thing I checked. It says penicillian is not the best for it if I remember.... I should see if it mentioned amox because if so I should really tell the dr. to share it with his colleague who told me if amox didn't take care of it than it wasn't pandas.

My ped (who is not much into this pandas thing and definitely not a believer in prophylactic antibiotics) gave me a pamphlet he had on it from uptodate.com ..I am supposed to return it after I read it..... of course in it it says that they don't believe in prophylactic antibiotics for this... it also stresses titers a lot. I want to return it with some of my own stuff but it can't be anything that is a compilation from parents.. he already let me know what he thinks of online research and accuracy when I told him I have researched plenty myself... that some of it is certainly good but so much of it... So anyway I want just a few basic clear articles from respectable people... What would you pick to give? I plan on giving him a copy of the stuff Dr. Cunningham gave me with my ds's results because this is not the dr. I really see regarding my son but I can tell I intrigued him enough to get him to look for some info and want to see if I can interest him a bit more....

Why not just do the aso, anti DNAsse-B at the same times to possibly not have to go back? I would love to do the cunningham test on my supposedly non-pandas daughter... but until it becomes diagnostic and covered by insurance it's not going to happen. FallingApart.. I was told exactly the same thing by my ped about the titers... that elevated titers are really not very alarming to find... that most people have them due to exposure within a year to strep.

Thanks Buster. That makes sense... although my ds does also have the rise in aso too. I don't know that this is relevant to anything.. so far no dr. has reacted but my ds has a normal temperature between 97.6-98.6... but very often and very randomly he runs 99-99.7 with no explanation... I only check him because his ears turn red when he his temp goes up a little. Would it be due to a low grade infection from strep possibly?

What is the difference between the 2? SC is also triggered by strep?

Susan, that is really great that you have been able to get them to all work together!! How does your daughter feel about shots? Is that going to be difficult or is she ok with them?

I don't have any advice but it sounds like your son's school and your son's teacher are wonderful.

Maybe your immune system is more mature and can meet the challenges more readily? Do you know for sure that you're NOT catching it? Do you get cultured quickly? What if you catch it but you're able to fight it off quickly and only the level of your ASO titers would really reflect a recent infection? Is it possible for people to be periodically asymptomatic? My DS12 has always been entirely asymptomatic, so who knows how many times he's had strep and we just didn't know. But, initially, in the early school years, he would bring home a school memo about a case of strep having been identified in his class, and within 3 or 4 days, I would come down with a bad case of strep throat, while he remained -- to the untrained eye, anyway -- A-OK (never knew at that point to associate an uptick in his OCD with strep exposure). But in the last few years, even though there's been more exposures at school according to paperwork coming home, neither he nor I have actually come down with the classic symptoms of strep. Did my immune system finally identify it to the extent that it could fight it more pro-actively? Or maybe my system is coursing with ASO titers also, keeping the strep itself at bay, and I'm not predisposed in some way to OCD or TS so I'm not suffering from other ramifications of the immune system? All very puzzling! Okay, so I just added to the questions, didn't I? Anybody have answers? I never had my titers done. I had one case of strep that I was aware of with very much the classic symtpoms of an awfully sore throat and fever. That was the first year we had strep in our house that I was aware of.. my dd had it like I did... my son.. only cultured positive and was only cultured because I asked just since we had it.. I had no idea of pandas so I didn't know

so how would you really know if it was breakthrough strep? the culture would be negative right? My ds is on azith right now but my dd has strep throat... she is at the beginning of a 10 day dose of antibiotics... so if I don't see anything wonky in my ds I assume the antibiotics are doing their job but if I see anything wonky I assume it's breakthrough strep? So far so good but I guess I am just waiting for it to happen.