ajcire

Hope she feels better! Doesn't sound like strep with the cough and body aches but you never know.

My son gets them a lot too... but I know a lot of kids who get them a lot so not who are not pandas. My dr. attributes it to the dry air as well and also said it looks like has a capillary or something like that close to the surface that is probably easily irritated. My son gets them at completely random times... middle of the night, middle of school, (I have gotten several calls from the school nurse letting me know he had one at school). Us too. DD8 having lots of them. The doc's say dry air from the heater. Hoping they stop soon. Susan

My son's is like that... mostly it blends in with the color of his face... so nobody would look at him and say look at that rash on his face except for me... cause I'm looking for it.

We have the same thing with my son.....not his nose, just his cheeks... little bumps... hard to notice at first glance, but definitely there. He almost always has it... whether on antibiotics or not now. Ped had no thoughts on this... and was not concerned.. I have been wondering if I should have taken him to a dermatologist...

Why grandparent and not parent?

I have to say it's werid that I logged on and saw this because my mother literally just asked me this question. She was just asking if it's possible that it's way broader than it appears and if it isn't possibly genetic for dh or I. Not to the same extremes but I do have done a lot of those things... nailbiting, list making but getting nowhere past making the list, thinking things like if it takes less than XX steps to get there than XX will happen (Not sure if this wasn't just my silly way of wishing for good things though and being superstitious about it)... but I can tell you that it is almost encouraging to me to think that maybe some of us do have it because we are functioning members of society, with families, relationships, friends, happiness....without interventions...

alderliefest, how do you know you haven't given it to anyone else?

Then there are the kids like my son who I had no idea even had strep because he showed no normal strep signs... so by time I figured out pandas and the strep connection with my son who tests positive in a culture but with no symptoms but tics and behavior it was way more than 48 hours... so I have no idea how quick the onset even was. After reading the responses to this so far, I see some are concerned about the narrow definition being used in the article above for defining PANDAS. I really do not know how I feel about this myself. Is it going to be within 48 hours of strep? Or is it going to be the severe and debilitating onset? Does everyone really always have both? I also notice the last statement, where they say tics are not REALLY a big feature in all this. It sounds like they mean the OCD, separation anxiety and handwriting issues are more at play. But, it seems to me the handwriting deterioration would be more aligned with a tic problem. If this is the criteria they use: within 48 hours of strep a severe onset of OCD, separation anxiety and handwriting issues, my son would not qualify for the study. But of course, I am still deciding myself if ds9 is PANDAS or TS. It's just that I keep getting this nagging feeling in my gut that there is more to it. I'm not sure being this narrow is a good thing, that's all. If we only use kids in a study with these limited issues and associate it with strep only, we may be back to what Kurlan found. But maybe not, Swedo kind of proved it before. It is all so very confusing to me....

Susan, I'm glad to hear things are going well! I hope it's the start of great things for her!

I definitely attribute my son's temper to Pandas.. his irrational reactions to things.... he has some quirky traits but he wouldn't fall in the aspergers category although some of the quirks definitely overlap those you might see in a child with aspergers. When he's uncomfortable he displays lack of eye contact (but only when put on the spot by someone he doesn't know well really) and you can sense his discomfort in his voice when he is answering someone he isn't comfortable with as well... he gets a formalness about him and very serious.

My son has that kind of rash on his cheeks... bumps that are skin color.... really it blends in so unless you are looking at him carefully you could totally miss it's there. He almost always now. His ears get lobster red often.... I find myself constantly checking his temperature because when he has fever his ears turn red too...his temp used to be 97.8-98.6 but not often he runs 99-99.5 but my doctor has dismissed it and said that's not a fever and to stop taking his temperature.

Is it wrong that being it fell on a weekend I didn't change my kids clocks It's hard getting them to go to bed when the sun's still out though... but we haven't seen sun in a while..it's so rainy and cloudy.

One of my peds who was not quite on board with me on pandas... well he believes it exists but goes strictly by his little pamphlet on his believes of how it should be treated... he made me a copy of it because he was really impressed with himself that he had this info on it.. ha as if I didn't already have a book on it.. but even in his little pamphlet it made reference to amox and penicillian not being known for being highly effective with strep. --> QUOTE(Amy B @ Mar 12 2010, 02:34 AM) 59574[/snapback] Thanks you really got me thinking. It would be great for the nonreactive kids because it would decrease the spreading. Not such a great idea for the pandas kids. I've been trying to think outside the box. It's a very small box.lol. We went to pediatrician tonight. The rapid was neg. as always. She did give him abx, penicillian 10 days. I am very lucky to get that. They do not like to prescribe any antibiotics with out a positive. I'm just afraid its not strong enough and this illness might be a bad one. He has already started the eyes and mouth and some noisy tics. My dh is freaking out again. What do you think about the penicillan? They will not give out augmentin or azithro. They want to save those for when he's really sick. I did get ammmox a few months ago. I do think it helped. Thanks.

If I knew nothing about pandas and a strep vaccine was offered I would not go for it because I really need to believe the benefit of the shot outweighs the risk and before pandas I believed strep to be really very simple.... get strep, get antibiotics, get better..... and there is no way I would give it to my pandas child.

I don't know who Shulman is but the first ped I asked about this must because he used the exact same example of falling out of a tree to discourage me from looking into pandas.

I ditto that.... how awesome it would be to have a first hand source.

I think that it's important to not forget the less subtle cases. Lauren is a cases of not so subtle pandas. Those are the cases that get the attention but there are so many children suffering with less sensationalized versions of this that just aren't newsworthy... it's easy to forget these children. I hope that the IVIG proves to be the cure for Lauren.

Do you think that the long term antibiotics some of our kids are on would actually aid in the positive result if it was going to take a year from treatment? Meaning maybe it would be negative till treatment but since our kids are on antibiotics maybe we would get a more accurate result? Its a new book so I bought it on Amazon for $35. The charge for Igenex tests 188 and 189 is 200 but you may have to pay a doctor a blood draw fee in addition to this so it ends up costing close to 300.

Is this the same thing that someone mentioned was going to have the other Dr? Dr. B?

I know that when my ds was 2 and started the constant eye blink...all of a sudden one day it was like just non stop all day... and the dr. told me it was a common childhood tic and it would likely come in spurts where it would be a lot and then I wouldn't see it for a while and it would probably come back and he would likely outgrow it... Obviously I now kick myself that I didn't ask but why? Why would it come and go... what would cause this but rather left the office feeling relieved that there was nothing really wrong... ha. Obviously now, knowing what I know.... I would have done things much differently. Until this becomes so common that it's in all those parenting books that new parents flock to or until peds stop calling it normal childhood tics people are not going to catch it at the beginning. I have a practice that has 5 peds in it... and out of the 5... only one of them is up for being educated... the rest are hearing what they want to hear with this. I agree, early strep infections seem to do something profound to the immune system, that's perhaps why they seem to "kindle" the development of other infections. The infection is the root cause, and early on at least the infection is frequently strep. Then, the triggers tend to blur into one another. So the best time to try to cure PANDAS is very early on. This is where we most often see the "one pill wonder cures" where one dose of zithromax totally cures a tic disorder. Once persistent infection after persistent infection begin piling on, cure is still very possible, but sometimes harder to achieve. The theme of co-infection is usually very important in the older (>10 y.o.) child with the PANDAS-like picture. It will be most important then, in any education campaign, to let parents and docs know about the early signs of strep infection (the compulsive urination, etc), just as is done in autism. Dr. T

I agree.... I think a lot of kids are drawn to that... I actually find my kids are not drawn to that at school at all... and funny is it used to worry me that they aren't... especially my ds with pandas.. he's too darn serious to get drawn into that. Now the description momwithocdson gave.... I so get that... the negative nothing ever goes right for him attitude...sounds just like my ds... Reminds me of Eeyore!

I know I was very appreciative that lymemom took the time to contact me with some information. It completely has me in a panic but certainly not because of her... just because the thought of starting over in figuring this out is making me feel ill.... I don't know if it is what is going on with my child or not but it is definitely seeming to be a possibility with what is going on with myself.

Ok.... So if I find out I do have lyme... if I do I would know that it was at least from over 15 years ago as that is when my joint issues started... I am understanding that if I get treatment it will help me from getting sicker but will it do anything about the past issues?

Seems like for a child who has more than one of those... it would be impossible to know if some of them are benign as might be in the general population it's found in or not or if they are also causing problems.

If I remember from when I did the test it was pretty clear that it was not a diagnostic test as of yet. I see many people encouraging people to have the test done but I don't think anyone can say it is a reliable indicator of PANDAS. I did the test on my ds and for me it was something that was a little concrete that could possibly be a piece of the puzzle but certainly not a determining factor. There was nothing in anything from Dr. Cunningham that led me to believe this could currently be considered a diagnostic tool but it showed me that my son's results were consistent with others who have PANDAS symptoms. I sure hope one day it proves to be a reliable medical tool. I am hearing from some parents who are very alarmed by this, as they say they were urged by some members here on the forum that they should have the Cunningham/CamKinase testing done as it was the only "reliable" indicator of PANDAS. As it is a costly test, they are now very concerned that they have both wasted their money as well as not received reliable test results Could we get some clarification from both sides of this issue please? as understandably some people are now confused