ajcire

I am confused. Grant isn't the one who said it was not real. Wasn't it someone else in that article who said that there is no evidence and no evidence that long term antibiotics helps?

I started to read the comments below that article and quickly changed my mind!

I am sure you have already ruled out lyme but just in case... just thought I would throw it out there.

My heart breaks reading this. I can't imagine how much it must break your heart as a parent to see that. You know I never connected that it might be connected but my ds has always hit himself, not really to hurt himself but I think as an outlet almost like he is beating his chest like a gorilla when he is frustrated and upset... but he never does this outside of the house... he will also hit his head when he feels he is not being treated fairly... but once again, all only at my house or my parents house.. never in public and not really where he is hurting himself. Almost his way of not hitting someone else. I really never considered it self injurious but now I do wonder if it is connected to any of this pandas stuff now that I am reading some of your descriptions.

Yes! My ds would not just initiate with a stranger at all but with his classmates and what not yes... In fact his report card is now done electronically and the teachers had to select from choices... she selected disrupts class. I totally knew what she meant but I did ask her to make sure I was right... I really would have been shocked if he was actually doing disruptive behavior in class... he wasn't but he was having to be the one to answer..telling the teacher if she was off schedule even though if she was, it was intentional, telling her what kids were doing..... She told me she felt bad choosing the choice of disruptive but there was no category to describe it. She said the other kids weren't really paying attention to it yet but she agreed that as he gets older this can be a problem as other kids will pick up on it. He truly thinks he is being helpful. It is like he can't not finish his thought of it too so if I stop him while he is saying it he gets very upset and usually just says it anyway... I feel like he needs to just learn when to stop talking to stay out of trouble sometimes. He also has a very hard time with the word I'm sorry. If he does something by accident, to him he didn't do it so he wont' say sorry.. if he does it on purpose he is more likely to apologize.

My ds is very big on minding everyone else's business (especially his sister) It is always worse when he has strep. I noticed so many behaviors that are similar in my ds as in others (constant attention to detail, argues if not exact and stuff like that) so I was wondering if this is just a lovely trait of my ds or if others see it. I mean, I keep reminding him to worry about himself and to just keep track of himself and he knows what I mean but no sooner than I say it is he already reporting to me on what she is doing... like she is sharpening a pencil that he thinks is sharp enough... he gets so focused on it that no matter what he has to make it a big deal.... he always needs that last word in too. I should add that while he is not a behavior issue at school his teacher said that he was constantly telling her who was doing what but she would just remind him who was in charge (she was very good with him and did seem to get that this was who he was, not him being bad) .. she said if she needed to know who already had a turn he would instantly raise his hand to tell her who already went.. stuff like that.. And one more thought.... my mom just asked me if I thought that even before ds's eye blinking at the age of 2 if it was possible that his inability to go to sleep without crying first was related... She doesn't mean as an infant when he was an awful sleeper because most newborns are but she means even beyond that even at the age of 2 I couldn't get him to nap without him crying first... I mean, my initial thought was no, he was just a bad sleeper...at 18 months I remember he would go in really easy if he was in his bed instead of crib and I laid next to him.. if I got up instant tears.. if I stayed not one tear... I of course would hate to think that was the case because that would make me feel awful for the times that I really fought hard to not have to stay with him at the age of 2 and up... at 3 we finally got him to sleep in his bed without us in his room... then this started at the age of 6.

I actually suspect most people figured it out on their own and brought it to the attention of their physician... but maybe I am wrong. I definitely pieced it together myself after ds went through a bizarre and random thing of refusing to sleep alone and started having sudden rages that would come and go quick but were intense and directed mostly at me and his sister... his tone chanced and he seemed sad all the time. It started 2 days after his sister had strep.... after a few weeks of this I was in tears and exhausted and googled sudden sleep anxiety and children and up popped pandas... it took me 2 seconds to gasp when reading it... when I saw strep right away it caught my attention.. .then it said that often these children are brought to the dr. as little ones with an eye blink or other tic and told it is nothing.. aha... at 2 I took my ds in for an eye blink, at 4 for a coughing tic... then the same year and the first year that we had strep that I was aware of in our house (me, ds and dd had it) he had sporadic bouts of hoarding garbage that we at the time found a bit comical, handwashing just enough for me to notice it was a lot but not enough to cause alarm, frequent urination... his teacher had just told me he was using the bathroom a lot... and he didn't have a bladder infection....good at math.. I mean I felt like it was so clear that any dr. should see it.. and my ds is so mild I can't convince my dh... but to me it was sooooo obvious. I took this newfound info the dr. so sure he would see it too and he told me that I was being crazy, pandas is not real and ds was not sleeping alone because it was a behavior issue that we needed to just deal with and let him cry and scream it out... I asked the dr's in the practice because I knew my son and knew this was not a regular behavior issue... this was a mellow, well behaved kid before this... finally one said he was believed in it but it was out of his realm and referred me to a dr elsewhere... who was helpful and felt it was indeed pandas... bloodwork with titers didn't confirm it but he said all signs pointed to it regardless. I learned her titers meant nothing anyway.... I JUST now found out that the one dr. in my regular office I didn't ask... will treat for me so I don't need to go another dr.... If I didn't google, I never would have figured this out..I would have probably headed to a child psychologist for the sleep stuff at one point and unless they pieced it together who knows... Ok, edited to add that I hadn't seen the poll part when I posted this.

Happy Birthday! He sounds so very lucky to have you as his mom.

Ok, that is a bit weird.. my ds is early august, the first time I really knew something was wrong (not the in hindsight things) was the end of August. This year it was early sept but I think that is because he started school and instantly got strep.

It is interesting to me with the math as my ds has always fascinated us with his math skills, his logic, ability to find a pattern. He's now in 2nd grade. We never saw a decrease in his skills during anything. He started reading at 3... he is an incredible reader and speller. He walks around spelling things sometimes just for fun. He has very neat handwriting but he really hates writing. He also is a very concrete thinker and can be very literal.... if there answer is in the book he can find it.. if he has to think outside the box a little.. it's a bit harder for him.

Is this test only effective only prior to being on antibiotics? Do you need to wait until you are seeing symptoms but before you treat to do it?

Seriously, I hope that I am just being crazy right now. Last night my dd for the first time started with she didn't want to sleep alone.. it was manageable but she was crying about it. Today she has been out of her head in tantrum going on 2 hours now. She is currently on antibiotics that she just started the other day for strep. She gets strep fairly often but this is the very first time I am starting to wonder.... I am staring to see a little of my ds in her right now. I hope she is just being a moody 5 year old and that I am being crazy... but curious if it is common for siblings. Ok, I just stepped back a little and decided she is just being a 5 year old and possibly just learned a little from my ds. I think this is all just so fresh on my mind that I am seeing it everywhere.

Is there a link that explains this, a link that I could give my dr. regarding this? Is there any reason to do this test if we are already treating this as pandas? Or is this strictly to help in trying to diagnose (and to convince my dh) ?

That is awesome!!! Sounds like you have a wonderful dr. because a good dr. doesn't always know the answers but isn't afraid to say so and isn't afraid to learn from someone who might know more.

Great idea about youtube. I have searched on their for pandas info a few times with no success... just hoping to find some mother who was describing my son. I know that I have been able to find some very useful videos on autism by parents on there to help with some friends of mine who have children likely on the spectrum and I was hoping to find something useful for me by a parent on there as well.

Peg, I can't even imagine how frustrating You can find this on the todayshow website... it has a video clip of that segment.

You are very right. I know that pandas is considered rare but I really wonder how rare it is. I mean, I think of my pediatricians practice... the dr. I saw the other day said he treats a few kids with this. I then wonder how many other kids have such mild cases that it totally goes unnoticed. My ds would really be a case that could go unnoticed at the moment. I mean, it's there.. but even my own dh is having trouble seeing it. It's clear to my dr. when I present the history but isolated his symptoms are not clear at all and would just be mistaken as obnoxious, moody, bright and quirky, and having a mild common childhood tic... no big deal... to me it's a huge deal. My ds can not be happy when he is like this. I want him to be happy. I am so very grateful that his symptoms present mildly but sometimes I think it would be almost easier if it was more extreme so I could say LOOK!!! I felt that my daughter's case was also too mild to be news worthy...but in the end when she came back to us, we realized that she was further gone than we thought becasue her symptoms didn't start with a sudden dramatic change....it was a progression. But the important thing to remember about the mild cases is that they prove just how wide a spectrum we are looking at. Could it really be as mild as emotional lability (depression) all the way to the extreme of anorexia/severe ocd? We know about the extreme end...and as parents we are in crisis mode when an episode hits....I thiink the research into weather this can be very mild may have to wait until we can at least get this disorder in the books first. I think this is going to make a real difference in the treatment of mental health overall.

I keep telling my mom that I wish House would take on the case!

Yeah, I do agree it was great to hear the word. I think I just was hoping it would be something that would be more clear to my ds but I know that my ds's case is so mild it would really be newsworthy... if that makes sense.

Yeah... I was a little disappointed. It needs more attention covering the varying degrees... it needs to be on one of the big talk shows as a full show.

I am watching and recording it but I don't think it will help me with getting my dh on board because it's so much more extreme and clear than the issues with my ds.

Thanks everyone... for now my ds is on amoxicillian for the 10 day dose... as is my non pandas daughter who has classic strep symptoms (sore throat).

I was just realizing that the last 2 days ds was actually not clearing his throat as much and his behavior was much more tolerable. I just found out though yesterday he was positive for strep... and I just started the antibotic this morning. The dr. wants me to let him know next week before the 10 day run what changes I see.. he said he might want to continue him without stop on a different antibotic depending... I am guessing if I see a positive change he will want to continue... but he's not at his worst at the moment so not sure I will be able to tell much by next week. When you have put your kids on the 10 day course for active strep.... do you notice a noticeable change right away?

I don't see how you could get a school to do that when it's hard enough to get the local dr's to acknowledge this.

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