ajcire

I used to teach and prior to getting my full time teaching position I used to home teach, paid through the district, a little boy who was homebound do to illness. I was given whatever I needed from his assigned teacher. We have a family friend who has since retired but was superintendent of special services in one of the districts up here and he said that he doesn't know much about Pandas but that he had a child on home instruction due to being just unable to attend school who had been diagnosed with Pandas..

I think most people here can relate very well to how helpless you feel. Big hugs to you. I think the part of your story that now is so frustrating is how it could be that so many doctors out there are not aware of PANDAS let alone the ones who are aware but just refuse to acknowledge it is real. I think what you saw here in posts regarding this are just mom's who are exhausted from knowing what is wrong with their child but not being able to get the right help. Best of luck to your family!

I would think these numbers aren't really comparable amongst kids. Wouldn't it all depend on when each kid last had strep? My ds had an aso test done 2 weeks ago. His ASO is 480. But he had a positive strep culture in September.

My ds had strep 2 times at the age of 5: 1st positive only cultured because everyone in the house had it. He had no signs but a positive culture. 2nd positive he had pink eye, no strep signs but the dr. said it often went hand in hand so she cultured him and it was positive. Those were before I knew about pandas. Since knowing he has had 3 more positive cultures, with no strep symptoms but I tested based on behavior and that someone else in the house had it. He has tested negative so I know it's not just that it's not gone inbetween. He is now 7. I consider him very mild based compared to others I am reading about... Throat clearing tic, sleep anxiety (although now it's almost gone.. we just have to check), argumentative behaviors, quick to upset.. more of that is what we see.... So my basic answer is - positive cultures but without classic strep symptoms - mild Pandas symptoms (although I didn't realize they were mild until I realized how bad it could be)

Faith, I think it was a good reminder for all us.. not just you I definitely agree that it should have taken only one doctor to figure out that was not a sneeze. I also agree that there is likely more behind it... either way if that little girl hit the jackpot by now getting access to knowledgeable doctors that is great. I totally hear you though.. it is really really frustrating knowing that there are parents here who have been battling with this for so long, who already know what is wrong, but still can't get the right help for their child Now go eat something!!

I so hear you! I only had my ds tested because it was part of an eval to get speech services when he was 3. I mean we knew he was bright.... but when he had the psychological part of the testing and the psychologist told me she was so excited about his results... I mean she was beaming and ready to report to me how bright my son really was. She told me the results and then told me what it meant and waited for me have some great big reaction. She said to me, "Why aren't you jumping for joy at this?" This was pre any of my pandas knowledge but to me, he was my little secret... it's like I felt I had to hide his brightness for some reason.. couldn't talk about it with any of my friends for fear of sounding like that braggy mother... The psychologist did tell me that I would have my work cut out for me when he got to school because of this and explained that really it made him a special needs kid... just that they weren't going to provide services for him... In my gut I felt like there was more to his brightness but was assured it was not aspergers and that he was just a bright child with a few quirks... I too have often said he's just too smart for his own good. I feel like it's like the problem of a really thin person... I mean that person might be struggling with to gain weight.. but really how many of us want to hear about how hard it is for them to gain weight... That's how I feel with my son.... who really wants to hear about the problems that giftedness brings. Oh, as far as the handwriting.. interesting to me is that while my son doesn't exhibit the fine motor issues that many kids with PANDAS do I do sometimes notice an extreme of neat versus not.... His tests are always extremely neat. Unfortunately though she told the kids to try to write smaller (probably because some write sooo big) and well he seems to have taken her quite literally on that. I think she will need a magnifying glass to read his homework It took me time to get that it was something to be proud of, not ashamed of... not something to feel guilty about.

That is a great reminder to us all!!

I agree... great letter. Positive yet informative! I hope you get an equally thought out response.

Oops.. .I didn't realize that.. For some reason I only caught that they were going to have her see Dr. Nicholaides (ack, probably killed the spelling of that).

I can't offer any real help but can definitely offer some hugs. I think we have all had that feeling of wanting to go under our covers and cry.... and sometimes if you need.. it's ok to actually do it!

LOL, I needed a laugh today. That was it. thanks Colleen It's kind of funny that we are all thinking "duh". Hello.... Seriously, the medical community, at a very basic level, needs to learn what OCD looks like & what a tic looks like. And I guess what a sneeze looks like

Faith, I definitely agree that it should not have taken a whole lot of experts to see that is not a sneeze.... and clearly her reading the saving sammy book was setup.... but as far as a sudden onset... I no longer doubt anything. They did say it was possible she had other things that were missed and that ocd and tics run in the family with her parents (I might be wrong but thought they said that). I do find it odd that it made the news the way it did though... and interesting that they aren't going to the top PANDAS doctors to rule that out but rather sticking with the Saving Sammy one. I was happy to hear them suggest just the idea that illness can cause this and it is another portrayal of possible pandas that is not the extreme ocd case of Sammy.. so that is good to see. Now they need to show a kid with some mild behaviorial/irrational/argumentative issues connected to strep to really make me happy.

Wow.. I saw a quick blurb on the news about it but didn't actually hear the report. Thank you for sharing that link!!

If I am understanding this correct.....Goodness.. it doesn't take a rocket scientist to see that if you are going to use data for a study you better not just go on assumptions... like selecting cases that were not tested for strep but assuming they don't have it... If every time the dr. looked at my kids and said it doesn't look like strep and left it alone than they would have missed out on the positive cultures that come back 48 hours almost every time. They always tell me that it doesn't look like strep but they swab anyway to humor the mommy and then sure enough it's strep.. that's in my pandas ds and my non pandas dd. Really, if you are going to do a research study you would think you would cross your t's. Of course, if I am not understanding my above rant makes no sense

Do you know if he takes insurance?

Smartyjones, that is exactly what my ped had told me about strep in babies.. they still cultured my little guy when everyone had it in my house and I asked them to... when it came back positive I asked about that I thought babies can't get it and my dr. told me they never saw a case of RF or SC (ack, I don't remember which one it was they said) in under 1 year olds and that was the concern about untreated strep. They did treat the baby though just like they treated the rest of us, with the 10 day dose of antibiotics. what is that theory anyway? is it that the immune system is too immature to mount a defense so there isn't a concern about RF or SC so they don't worry that they have strep if under 2? could it be that pandas is a result of an early strep infection and that's what gets the ball rolling?

Faith, thanks for that explanation.. that makes sense!

I wonder how your ped would explain my ds's positive throat culture at a year old (my non pandas ds). Grr.. I hate when peds won't do a simple swab

When my ds was doing the eye blinking it was so constant that I was able to bring him in to the dr. and he could see exactly what I was talking about. It wasn't all the time at first but at 2 1/2 it was so bad that I called the dr. and told him I needed him to see my son right then. He of course said, oh... I see it but it's a common childhood tic... grrr.. he said sometimes a tic is just a tic... There was no doubt when looking at him that he had an eye tic. At 4 my ds started clearing his throat so much I brought him to the dr. to rule out that he had a backdrip or sore throat. I knew it was not that but I figured I better check. Once again, the dr. said it was a common childhood tic. He is 7 and he is doing it again, a month after having strep. He doesn't do it at school.. at least his teacher said she isn't noticing it.. she said she paid attention and noticed he cleared his throat a couple times but nothing that made her think anything of it. At home it's so constant that to someone else in the room it can make them crazy. If you draw his attention to it, he can sorta stop.. but he goes right back to it. Ok, now re-reading Faiths post I don't know if the throat clearing is more of a compulsion or a tic. I don't know.. he says he doesn't know why he does it, just that he has to. The eye blinking.. he had no idea he was doing it when he was doing it and could not control it at all.

Big hugs! In hindsight.. gotta love that 20/20 hindsight.... I had taken my ds to the dr at the age of 2 over eye blinking.... yep, normal childhood tic he said.. it will come and go.. don't worry about it. I seriously wish I knew then what I know now because I would never have accepted that a tic is just normal without ruling out every possibility.

Have you been able to clear your son with antibiotics (i.e., a negative throat culture 2 weeks post treatment with antibiotics)? Buster Yes... he has had a negative throat culture since then.... after the positive culture in sept he was on amox for 10 days and then we kept him on for an additional month. My non pandas daughter had strep again this past week and I had my son cultured again and it was negative... I only had him cultured because she was positive... not because I actually thought he had strep this time.. it was just to be sure. The antibiotics really seemed to help last year when he was put on it at the time we had more significant symptoms. That dr. who treated him then had him on zithromyacin. I guess I just keep questioning based on the mildness of my ds... BUT like I said, how can I explain that I can tell when he has strep when he has no other symptoms other than a throat clearing tic and behaviorial differences if I am wrong about this being pandas... Last year when I first pieced it together (the first year he had strep, that everyone in my house had it) we had the frequent urination (not accidents but going enough that his teacher noticed it was excessive too), throat clearing tic (we had eye blinking at the age of 2 that is for the most part gone), hoarding of garbage (I was so clueless that I thought this was almost comical when it was going on and it disappeared almost as suddenly as it started) sudden onset anxiety about sleeping alone, way to quick to react to things, irrational, really just mean to his sister (a different kind than just regular sibling stuff).... but much of this is gone now with just lingering stuff (like the throat clearing) and because it's so mild it's just so easy for everyone to blow off as nothing. I think I am just trying to talk myself into that I am not crazy, this is real.

The dr. who actually did the blood draw is not the one who wanted me to get it. He did it just because he was doing the cunningham draw for me and the other dr. had told me to get the aso. The one who did the draw is the dr. in the practice who last year when I approached them about pandas, he told me he believed in it but it was out of his realm. He referred me to another dr in another practice that he knew treated it... I recently got notice that as of Nov. 1st that dr. no longer takes insurance. I can not see him anymore. The one who did the draw told me that there was no reason for the aso being he had a positive strep test in Sept... but I felt I should do it since the other dr. had told me to go for it... just in case I do need that dr. for anything, I wanted to have followed through since it seemed harmless and my son was having blood drawn anyway. I thought I hit the jackpot when the one dr. I hadn't asked in my regular ped office of 5 dr's told me sure, I have some patientswith this.. he did acknowledge he doesn't know a lot about it but that he has found amox to work... I guess the few kids he has treated responded to amox so when I told him that I wasn't sure my son was fully responding to the amox he told me that maybe it wasn't pandas and that there was no reason to keep putting him on antibiotics if there was no strep. Yes... banging head here. As soon as he told me to get the ASO I knew he was not going to be my answer but right now I need to hang out with this. I guess I am full of my own doubts (because I have a husband who was with me the first time a dr. there told me I was crazy that this is not real and if it was my son definitely doesn't have it and he never went back with me to hear the dr. I can't go to anymore say that yes indeed this sure looks like Pandas to him).... I am hesitant to keep pushing for things when I no longer know what the heck I am pushing for. My son is at a good place right now and always presented with it mildly compared to how many other children present with Pandas... it is easy to ignore it in my house but I know from seeing all your stories that this is NOT something I want to ignore.. I don't know if this is making sense or if I am just sounding crazy now. I am hoping that the results from the cunningham study give me the push to believe in myself with all this. My son also has never had typical strep symptoms of sore throat/fever but gets the positive cultures. That has been the piece that makes me not feel crazy... that I can tell when to have him checked based on behavior and he tests positive.

I just called the dr. for the results of my ds's bloodtest... it was 480. One of the dr's told me to have it run because if it was low he felt it wasn't pandas (insert eye roll here) but the dr. who was there when I did it (and who did my draw for the cunningham test) told me that it was really pointless to do it because my ds's titers should be high since he had known strep in Sept... he was on amox for a month and a half since the sept. strep... but has been off them now. That said... what is considered normal aso? I thought most of you had more than one number but this was the only result they gave... I asked if that was it and the nurse said yes. I have no idea the purpose of the dr. who wanted me to do this really... no idea what info this was going to give him... the one who did the draw for it and gave me the results is not the one who ordered it and honestly, I don't feel like talking to the one who ordered it... just going to let this be.

Thanks Faith, I will look into that book. I don't think he has food sensitivities but I could just be missing it. His behaviors are not so much the types I seem to associate with that but maybe it's more broad than I am realizing. He has always had that look though... worse in the winter... looks sickly pale with the darkness under his eyes. erica, it can be food sensitivities that don't necessarily show up on traditional allergy tests. your child could react to things like sugar, dairy, eggs, etc. and not be allergic in the traditional sense. in this case, you have to be your own detective and see how your child seems to react after consuming certain foods. if he reacts with personality changes, it could be a reaction to something, in which case if you see the behaviors arise, try to log what he eats alot before he reacts like that, and then you can remove those things and see if things get better. I really suggest that book "Is this your Child", it explains alot. Faith

The eyes with dark circles... is so interesting to me because my ds who I believe to have pandas has always had that... the peds have always said he looks like an allergy kid. That said the dr. I had seen regarding Pandas ran lots of tests including allergy testing and it showed nothing.