ajcire

Thanks everyone! It is encouraging to hear. I feel like I can't even explain my son but you guys here are the closest to getting it for sure. He's doing fine in school, his teacher talked about his arguing but she said he is mature and respectful about it. I guess he can control it enough there. It's really clear to me that anyone I try to explain this to who isn't living it does not get it at all. I have heard I am making a big deal about nothing, just ignore him because it's for attention, he has control over what he is doing, he's just being a kid, I need to have better consequences.... just everything and it's from people who we care about and who care about us but ugh. It's got me in tears every time someone tells me that he's not being that "bad"... Yeah, what he is doing is not awful if it was a one moment thing but it's constant. It's not even all awful, he's a loveable kid but it's all "off"... even when he's being kind and mellow there is something that maybe only a mother can see. Seriously, I thought I would handle this all better than I am.

Bubbasmom, hugs! I think with my son it's more of an attitude. He also just doesn't seem happy. Even when he's happy he doesn't seem happy. He's the kid you can take to Disneyworld who will have the time of his life but yet if you watched him you would not know he was having a great time.

Yes Faith, I am afraid that to me he is mild because it has become our normal. Ack!

If your child's biggest symptom is mood/behavior, do you think you can actually get back your child once you get the pandas underr control or do you think a part of them is lost. Just feeling really sad that my child might not really ever be who he really is and wondering if he feels it too. I have asked him questions trying to lead him into how he feels but he's only 7 and he just has no clue what I am talking about. He doesn't know anything is wrong.

Faith, I think I always refer to my son as mild because when I read about other children here he just seems so mild but the part that concerns me is that this draw was done at a pretty good time for him. I am starting to think if I am considering him mild when he is not as mild as I like to believe. Moderate might be more accurate... it's so hard to tell because his symptoms are not so much physical, just a throat clearing tic and sometimes an eye blink. I can't really even explain what it is about my son. He gets irrational, impossible to reason with (gets very stuck on an idea) , argumentative, obnoxious, nasty to his sister (beyond the typical sibling stuff).... But this is all stuff that if I try to explain to someone it sounds like I am making excuses for his bad behavior/my poor parenting. He does have the look though, that pale face, dark under the eyes... just a look that maybe only his mother can recognize. In my opinion he stands out amongst other kids, an oddity that I can't put my finger on... not aspergers at all but yet some traits.... poor eye contact when he's in one of his moods, discomfort when things aren't how he wants it... he is very very bright and often his behaviors have been explained off to me as just quirks of a bright kid but I don't believe that is it. I actually was originally afraid to do the test for fear it would come out low and I would doubt myself and wonder if it was pandas. I am guessing that with his history and cam scores that it is pretty safe to say he has Pandas.

Have you considered 5HTP at bedtime? I used to give it to my son before bed for sleep anxiety. It didn't work instantly, but within a few days I believe it helped. I think I will try it at dinner every day since lately almost every single night it takes him forever to go through his bathroom/bedtime routine. He keeps coming back with reasurrance questions, I'm kind of used to it by now, but sometimes it can be past 10pm before he finally settles down.

Thank you for your kind words. Still not quite sure what I do next. I think I will share this with the ped who was so willing to the do the blood draw for the cunningham test in the first place and work from there. I know it's awful but I wish right now he had more physical symptoms than behaviorial because it would be easier for me to see. What happens? As kids get "better" do their cam numbers lower?

Thanks everyone for your thoughts! It's hard because it's not really strangers who would notice my son's behaviors. It's acquaintances and the particular case that got me so upset yesterday, it's family. Family who mean well but who don't get it at all.

I thought I would feel better with some confirmation. Instead I feel sick.

his score was a 141. the normal age matched score was 101 Ok, I have to admit I don't really even know what this means. I want to call my mom (she is the only person in real life who I have been really getting into details of this with) and she is going to ask me what that tells me. Help... I also want to be able to tell my husband (my pandas doubting husband) what the results indicate and I have no idea.

When people witness "off" behaviors that could be seen as obnoxious behavior that could be fixed with a little discipline (said totally tongue in cheek) do you even try to explain it? My 7 year old ds is really mild with all this but his behavior can be just obnoxious. He is really bright which just adds a different level to the obnoxious if that makes sense. My daughter is often his target (not physically but just the verbal nastiness). His arguing... I got that look from someone close to me today that said, "Why are you letting him behave that way" and I tried to explain it and that I wasn't letting him get away with anything (I do deal with behaviors but I have to pick and choose because otherwise something little will escalate to bigger)... I can't explain it to people who don't get it. I got that look from this person that I knew right away she thought that I was clearly making excuses to justify bad behavior. I am starting to find myself getting embarrassed by him and that is breaking my heart because what kind of mother is embarrassed by their child... and worse is that I know that he is just mild. Part of me though is starting to question how to know what he has control over and what he does not. What to punish and what not. I know I can't let him get away with stuff but how do I keep punishing him for things that might be beyond his control. At the same time I realize how stupid it sounds to people to hear that I believe my child has an illness that causes him to be obnoxious and nasty at times... seriously, it sure sounds crazy when I listen to myself. This will sound dumb but often my son changes his voice... sometimes it sounds almost babyish how he is talking. It's making me crazy. If I remind him to stop and talk in a normal voice he will but ugh.. do you think it's part of this or just an annoying habit of his?

Thanks! I will be more patient then It's only been 2 1/2 weeks and I know they are swamped... just so curious to see the results.

Does anyone know approxiamately how long to receive cunningham results? In the email Kathy said 1-2 weeks. I know they are swamped. Just curious on the average time frame?

Thanks you for that book suggestion. I am starting to get an uneasy feeling in my stomach now. My daughter (non pandas although she is prone to strep with classic symptoms and her behavior lately has had me concerned) has been complaining of stomachaches for a long time now.. almost daily. I asked 3 peds in our ped's office and basically they told me that I could try to eliminate dairy or wheat.. pick one and start if I wanted... I felt like it was just them not knowing what else to tell me and I was overwhelmed at eliminating either from her already pretty limited diet (typical picky eater). 2 suggested an elimination, one suggested just keeping a journal to look for a pattern... I see no pattern. I'm getting an uneasy feeling about all this. My son had allergy testing done last year... it was part of what the dr. did as far as complete bloodwork up... and everything showed fine but I am guessing that wouldn't show a sensitivity only an allergy? I highly recommend this book if you are interested in learning more about gluten intolerance. Most doc's aren't on board with this yet but I am so glad our Dan! doc understood the test results. Going gluten free really helped us but I know it's not an easy pill to swallow at first. Also, my oldest dd has neurological issues (anger and poor behavor) with gluten while my younger has gut issues. The list is really long of possible side effects from gluten. http://www.amazon.com/Healthier-Without-Wh...e/dp/0976853795 If you don't have the typical gut issues though, I can see where it would be tough for your dh to want to jump on board. Susan

Thanks! I was trying to read about it and things I saw were saying that high IGG wasn't necessarily anything but I think I am getting a little nervous now. I am having a hard enough time getting dh on board about pandas if I start questioning bloodwork the dr. thought was fine he will think I have really lost my mind. I might run this by my regular ped.... one of the peds in my regular ped office has been really great about being open minded but has also been honest about just not knowing enough about pandas himself... hopefully he can shed some light on the bloodwork for me. I don't know much about celiac but I know my ds doesn't have any stomach issues that I am aware of.... if this was my daughter I would be nervous because she tells me she has tummyaches all the time.

Thanks, I will look around there. I am telling myself it must be something the dr. felt was fine but then I also know they are human and miss things. quote name='kim' date='Nov 23 2009, 03:55 PM' post='45955'] erica, You might try posting on the TS board or reading thru some of Caryn's threads there. I think she still keeps an eye on that forum. She has a celiac positive son. Here is a link to one of her threads. http://www.latitudes.org/forums/index.php?...'s&st=0

I just got my ds's results from bloodwork he had done last year. I never thought to request this but the dr. is now not taking insurance so I decided I should get his records. I saw this dr. one time regarding pandas last year. He ran a lot of bloodwork and said it was all normal. I was too clueless to even ask what he was testing for. So I just received it and there was one thing that came back positive out of range. Gliadin AB (IGA) Negative Gliadin AB (IGG) Positive Does anybody know what that means? I'm guessing it's nothing but figure that since I am staring at it and wondering I might as well try to figure it out.

What is the K12 program?

I came across this and thought it might be of interest depending on where people live. http://www.connectionsacademy.com/landing/...CFR9N5Qod7WdBqQ

That is awesome and it sounds like he has a great teacher and slp too! Hopefully there is never a next time but if so now you have a great base of having them see the real him to know if something is not right. I had to smile at him secretly wanting to go. My son has always been that way....he's now in second grade and his teacher told me at parent teacher conferences that she has an ongoing joke with him because he will always tell her he hates school and would rather be home.. she laughed because she said he is the first one to want to know what's next and the most excited about what they are doing.... It's become a habit now.. if someone asks if he likes school he says no... but yes secretly, he definitely does. His teacher picked him out a book from the library the other day called, "My Rotten School" and that my ds thought that was pretty funny.

Ugh!! I don't get it.. are PANDAS kids prone to strep? I know so many people who just never get strep... but it seems that PANDAS kids get it more often than others? My non pandas dd gets it more than my pandas ds (although really I don't know.. he only shows symptoms behaviorially and with a minor throat clearing tic so maybe I just miss his strep often and he is really giving it to my dd some of the times...) but still.. I never got strep myself except one time and it was the first time my kids all got it too... I never got it again yet they keep getting it. What am I missing? Are some people just prone to it? Is it just coincidence that pandas kids get it a lot? Is it just an evil coincidence that siblings of Pandas kids seem so prone to it as well?

I just wanted to let you know you are not the only one whose husband is not quite on board. Mine tells me I am looking too much into things and just isn't getting it either. I think deep down he knows that there is something more to it than it just being who my ds is.

The eye blink was the first thing in hindsight that I saw with my ds (he was 2 at the time)... it was at the time though just written off by the doctor as a common childhood tic.

Interesting. I know my office always does the culture if the rapid is negative but I didn't think they did the culture if the rapid came positive.

BIG HUGS to you! I don't really know what PEX is... why would it be more dangerous to treat your child than another child with it? What is he afraid could happen?