ajcire

Is there a way to change usernames? I thought of that right after I made mine up... that I wished I had picked something much different.

That is great news!

Steve, I would guess you are probably around 3 hours or so from Dr. Trilifetti. Define Upstate. Where are you? Albany area...but could travel to most anywhere in the northeast if there is a good recommendation.

Wow! I guess I really have no excuse not to make good use of local resources. I'm coming from North Carolina!!

Susan, I almost posted Dr. T but figured that was not upstate... I'm 40 miles North of NYC and live really close to Dr. T... Susan, where are you travelling in from?

My ds gets the same thing on his cheeks... I have been trying to keep an eye to see if it is matching up with episodes or not. The ped didn't give it any thought.... it's weird how it just comes and goes and when it's there it's not like just a couple.. it's both his cheeks but it's like it blends right in so only if you are looking for it do you even see it yet they are definitely little bumps. That is wierd. I never mention this because I did not know how to describe it. Meg has this a day or two before each of 2 major onsets. I'm not sure about the original one when she was little. It looked kind of like the really early signs of whiteheads, but she was only 6 and 7 - and they faded in a day or two without becoming anything. It was like a rash, but skincolored. It was just odd to me because she usually has perfect kid skin. I mentioned it a few times to docs and the did not even blink or comment, so I dropped asking about it.

I'm not sure if you had frequent need or urge to urinate but I know that while I was piecing this together and struggling with whether or not the not so obvious behaviorial things I saw were related it helped me when I saw frequent urination on the list because that was something concrete that I had observed.

Thanks Buster! I am going to not think about those numbers for now. I will be curious to get the "hard copy" in the mail. It said that Dr. Cunningham will write her remarks on it or something like that... wondering if that means she will try to shed some light on it although I am getting that they aren't there yet in figuring out if those numbers correlate to mean anything in regards to our kids. Every laboratory experiment uses a positive and negative sample as part of a "run" to verify that the test really is working. Normally, you would never report these -- they are internal measures for the lab that they used the right chemicals and got known answers. Typically they use a prior known good sample and check that the result this time matches the result last time. Buster

Thanks Buster. Ok.. so while I know I shouldn't even give these results much worry right now since its just for the research and hasn't a meaning yet but several of my son's seemed way off... like the Anti-Lysoganglioside was 640. Every laboratory experiment uses a positive and negative sample as part of a "run" to verify that the test really is working. Normally, you would never report these -- they are internal measures for the lab that they used the right chemicals and got known answers. Typically they use a prior known good sample and check that the result this time matches the result last time. Buster

This might be a dumb question but what does positive control and negative control mean?

Vickie, so true.... that is pretty much where I am at. You wait, you second guess... if it was more physical signs I would have a concrete reminder.

I just received these results a couple of minutes ago too. It's so hard to have numbers and want them to tell something but to know they don't tell a story yet especially when some of those results that have no meaning yet are way higher than the range given.

Thanks Faith.

I think I saw mention that there were other results people got too besides just cam kinase? What are those tests for?

Ok, I think I am getting a little nervous now. My dd (non pandas) told me tonight at bedtime that her throat still hurts.. will get her cultured tomorrow.. if positive I need to get her into an ent because she had strep in early Sept, the end of October and if it's again... I need to try to figure out insurance stuff and get my ds in to see Dr. T. Susan, can the dilation be part of her body's reaction to pain?

I think it's important to remember that not every presentation of pandas is extreme though. I think I could describe my son's mood issues as irritable, moody... not a total 360 from normal. His is more subtle but definitely there. I guess what I mean is that if you didn't know my son you might not say wow, what's with that kid. If the definition of it really stresses extreme and sudden than kids like my son will totally be dismissed. I do think my son had a sudden onset but it was dismissed as a common childhood tic, an eye blink at the age of 2 with no other obvious symptoms... sure in hindsight I now recognize things that were in him then too but we just figured it was his personality. It's such a broad spectrum, so hard to just fit into a nice simple explanation.

Susan, good point. I definitely have my bad days. I do that too. I just have an ongoing Word document where I write the date and day and make any notes about dd's behavior, good or bad, any symptoms that appear, break through's, dr. appts, unusual activities, etc. Erica, there can be a gradual improvement after being on antibiotics so you may be seeing some of this. After my dd's first obvious episode in January of this year when she had strep, she did get gradually better after a week on zith. But the strep came back so it didn't last. Also, we can have good days and bad days and I don't know what does that either. Susan

Wait, I don't know if this is what you are talking about but my son gets what we have called almost a rash but not really... it's like it's pimples but very faint.. not noticeable to someone just glancing at him but you can feel them and you can see them if you are looking.... When I asked the dr. about it he just didn't seem concerned. I need to track when exactly it comes out cause it comes out and stays around and then seems to just go away. He's only 7....it definitely doesn't give the appearance of a kid with an acne problem and I know it's not just him having acne.... but it's like raised pimples (colorless so it blends in with his skin).

Thanks Vickie. Yeah, a well meaning person was trying to get me to see that my son is just fine... great. I actually am having the opposite issue than you. My thing is not that anyone is looking at my ds as different and trust me I don't want them to see him as different but hearing that he can't possibly have pandas because the other kids are being meaner and clearly can't all have pandas just cause of that is aggravating. I just keep trying to get them to see that I don't think my son has pandas because he can be not nice. There is SOOOO much more to it than that. I would much rather think my son just needed an attitude adjustment than that he has swelling in his brain... grrr.... So for some kids does just time heal even without antibiotics? He was on a month and a half of amox back in sept/oct but it didn't put a stop to the throat clearing and behavior (tone, argumentativeness). You know, the other day I was asking about him talking in different voices and I just realized that not one time yesterday did he not use his normal voice. For those of you who document all this, do you just use a notebook or calendar? I just realized I really don't keep good info... and maybe in writing it will tell me the whole story.

My ds is not on any medications at all right now. What would be the reason for a sudden mellowness? Why would he go from having a long period of time of extreme nastiness towards his sister to a sudden day of being back to a normal tone and attitude? Is it even stranger that it is correlating with my dd (non pandas) telling me she has a sore throat yesterday? Calm before the storm? The eye blinking is still there/occasional throat clearing... subtle but there. And just a vent... when out with the kids at a kids fun place my well meaning family pointed out to me that the place was full of children who had some attitude/behavior issues going on or who just were not nice.... Just a vent cause they obviously aren't getting that I don't think my ds's the worst behaved child ever and that I do recognize some behaviors are consistent with ones seen in non pandas kids.... grrr... I'm going by a whole picture, not one isolated symptom. Plus yesterday was just an exceptionally good day for my ds... and so far this morning he seems to be off to another good start. It's actually making me nervous.

ack, just deleted my thoughts as I was just thinking out loud.

Peglem, that reminds me of before I knew about my pandas and what was going on with my ds... I had tested him for strep only because my daughter and I had it so I just figured I would check.. he had no symptoms that I knew of although while I can't remember now I am sure in hindsight he had symptoms that of course I didn't know were strep symptoms till I knew about pandas.... but anyway, the ped I saw treated him with 10 days antibiotics... the next time I was in for a time my daughter had strep I saw a different dr. I mentioned that I guess I should test my son because last time he had it too and he told me that he would never have treated him for the strep with the antibiotic if he didn't have symptoms, that some kids just have strep. He is also the dr. who told me I was crazy when I went back in to ask about pandas at a later date when I pieced stuff together.... I just keep thinking what the heck, what if I had seen him first and he didn't treat my son and I didn't know better until it was too late.... grrrrrrr...... I just don't get the whole carrier thing. Funny...we live in AZ! Sorry, when I made that post, it took me over an hour to complete because I kept getting interrupted, w/ 7 kids, I know you understand.. What I didn't make clear, is that we had no idea what we were dealing with at the beginning....so, we were just treating +strep tests, w/o infections happening...so hard for docs to even get a peek at her throat, but I think it was seldom sore...she didn't act like it was sore. We were told by specialists that she was a carrier, but they acted like that wasn't a problem, like only full fledged infections were problematic. Until now (and I have to credit Buster for finding and sharing info on this) we haven't seriously tried to eradicate the carrier state...I thought the smaller, phrophyllactic doses would keep the strep at bay. Having to fight so hard to get PEX and/or IVIG...it has become more urgent that we get aggressive with the strep, so that if we are given the chance for that kind of treatment it isn't wasted by self exposure. I think it will be harder w/7 kids...but knowing the seriousness of the carrier state in a PANDAS kid gives you a leg up on me! Anyway, didn't want to freak you out!

Susan, yes, I have the list from her and they are all on it. Do we know if Dr. K, Dr. L, Dr. T, etc. are on her list of doctors? Susan

Thank you for sharing that. Is it "wrong" for me to gently remind him to talk in his regular voice?

Debbie, I think I saw some of that special if it was the same one.. this one was about immune issues and there was a young child who was constantly in need of blood transfusions. I didn't catch the rest of it but it was really fascinating.