ajcire

I didn't even think about the flash... Yes... there was flash. I know this is dumb of me but I can't think right now... does that mean her pupil was big because of the flash or that it might have been smaller because of the flash? Yes, my dd is the first picture. I was thinking it's probably not as large as some are describing but remember... technically that is my non pandas dd but I am trying to figure out if her long drawn out emotional episodes are possibly pandas. My older ds is the one whose picture I didn't get to take today but he is my pandas kid and I do think that during his bad times his eyes get that look.... the large pupil but mostly that look. I know exactly what you mean.. I often say I can see it coming. Of course I can also tell before a meltdown because his voice gets all sobby and different too. I just wanted to make sure I was really getting what you guys meant about the eyes.

I think I need to post them a different way anyway... going to delete them from my post and put them back in a bit. quote name='Suzan' date='Dec 17 2009, 01:20 PM' post='49110'] I can't see it at work, I'll log in when I get home......

http://www1.snapfish.com/slideshow/AlbumID..._NAME=snapfish/ and http://www1.snapfish.com/slideshow/AlbumID..._NAME=snapfish/ One is my dd who I am now concerned about... this was during one of her freakouts a little while ago.. she was less than pleased that I decided to capture the moment on film. One is my 2 year old ds who I have no worries about YET.... My pandas ds is not home so I don't have one of him to include. Is this what you mean by the difference in pupil sizes? I am pretty sure you can tell which is which from the picture.

Yeah, I was really surprised when I got the email back with the current cost. She said her funding has basically run out. It seems like it shouldn't cost to participate in a research study that is really for the researchers but of course in this case this is equally as important for us as it is for the researchers. It's frustrating but I still am so impressed with the kindness of the group involved in doing the study.

Not really on topic but I just had a routine blood workup and my dr. put me on prescription vitamin d twice a week for 8 weeks then told me to take 1,000mg a day over the counter... he said I needed the high amounts at first with the prescription or it would not catch up.

Your girls are beautiful. It is so nice to have faces to put to the name. It is definitely one of those coincidences that make you stop and wonder. Ok, about the pupils... seriously, if I post pics of my kids eyes would you guys be able to tell me if they look dilated?

You can certainly ask. I contacted them recently and was told of the increase as well. They told me at this time they were unable to accept participants without payment. I totally understand this as they just don't have the funding. I didn't ask about if they would take less.

Thanks.... my dd is 5 1/2. She sounded in pain but then seemed to indicate it hurt at first a bit but she just kept it going. It seemed like her hips were hurting, but she was only about 4 years old and not talking. I was alarmed and terrified. But I don't really know if she was unable to make her legs work right or if there was really pain.

peglem, sorry to get back off topic but when you said your dd couldn't walk and dragged her legs was it due to pain or something else? My dd (non pandas but I'm not so sure anymore) yesterday was on the floor screaming about her leg, laying on her back and dragging her body with her leg in the air.. said it hurt if her leg touched anything....she was screaming like there was no tomorrow but she was in a fit over something else at the moment too. Later when she was calm I asked her if her leg really hurt so bad or if she just didn't want to walk on it and she kinda had a funny look on her face and said that it hurt a little but then she just didn't want to. I wish I knew when things really hurt or or not.

I am battling tummy aches with my non pandas dd but I am seeing emotional symptoms now... not tics.. no obvious ocd but maybe that is the root of some of the behaviorial/emotional stuff right now.... and starting to question the non pandas part for her. She does sporadically complain of leg pain. I am currently waiting on bloodwork to rule out lyme.. My dr's only suggestion on the tummy stuff was to start an elimination diet of wheat or dairy to see if it was that.. I am doubtful that it is that. She gets strep frequently with the sore throat and tummy ache.. in fact the first time she had strep I took her because she kept complaining her tummy hurt. Then mentioned her throat hurt after. This is so not rare and I am afraid that I am about to find out it's not so rare to have more than one child in the same family.

Excellent. Maybe insurance will cover it for me

I know you are probably holding your breath waiting for something bad but so glad to hear he had a great day... and how cool that the mayor read his paper at a meeting!

I see a lot of that around here and I have described my ds the same way... as very intelligent, just quirky.. always was more mature for his age even as a baby people would comment on it (although while he is more mature in some ways and you find yourself having grown up conversations with him, he can be immature in others).

Thank you for those thoughts pixiesmommy. I am really going too try to separate what is going on and what she is saying. I guess even though I know better I take to so personal. I used to teach special ed... my class was made up of children with autism and fragile x. I had tons of patience for my students. I need to find it for my own kids

Peg, reading that just made my heart sink for a minute. I had so little patience for her but imagine if she holds it in and feels safest around me being herself and then I get all upset with her. I need to find a way to not let this get to me or at least to not let her see it get to me. I guess either way, if it's pandas or just her pushing all my buttons I need to not let her see it is doing that. I need to work harder at making myself be the one person who understands them fully. I wish I could redo so many of our last few days.

I guess I better get a big journal to keep my notes in.... she is in pm kindergarten.. so she just left now.. but before that when it was time to eat she asked for 2 different things and then wouldn't eat them and got hysterical that she only wants strawberries (which she knows we don't have any more of)... my once rational child just threw a fit because she wanted me to make strawberries appear out of thin air. It's broke my heart that even my 2 year old knew she was acting crazy.. he looked at her and said, "but we don't have anymore" Ah when the voice of reason is your 2 year old you know you are in trouble. Then she just snapped out of it, it was done and over and she was back to talking to me like nothing happened... she didn't ask for anything and she just went without eating lunch (she had breakfast so maybe she just wasn't that hungry despite her screaming at me that she was starving and I had to get her strawberries). My dh has been away a lot so not sure but the baffling part is that I don't know if she would have pulled this if he was here or not. She might have started but when he told her to stop she probably would have. Maybe I am wrong now though.. things seem different the past few weeks. People (you know, those well meaning friends and family) keep telling me that it doesn't seem like it could be medical if my kids can control who they do it around.... ah.. my pandas son is way more difficult at home for me than at school... at school they think I am crazy if I ask about his behavior.

Thanks Vickie. I just hung up with my mother and was telling her about something that happened at my dd's dance class yesterday... a little girl had a meltdown about something, just sobby and emotional... but the grandmother there said, "Oh I wonder if she feels ok, it's so unlike her" which is when it hit me that it is a normal behavior but not on a daily constant level and I am realizing that every single day, every time I ask her to do something, every time she gets a little frustrated. I am just not sure what to do with this... how can something that is not clear be treated. I am going to be seeing Dr. T with my son in a few weeks and I am going to just ask him his thoughts on this too. I feel like I am starting to blame any of children's issues on pandas and that maybe I am just being crazy Plus if it turns out she does have it, you can imagine how crazy I will be watching my 2 year old and wondering when things are going to go wrong for him.

My 2 year old was not intentionally blocking her at first but yeah, he knew he could have moved and didn't jump at the opportunity (he is 2 1/2 and fully understands that stuff)... I have no reason to suspect pandas in him yet because right now he is just doing the 2 year old tantrumy stuff. I mean he is willful and has strong reactions to things but at this point I figure it's typical as well as he clearly has learned the foot stomp from my older ones. But yes, my older 2 ages 5 1/2 and 7 completely push each others buttons. I think that is some of what I am getting so nervous about. I do attribute some of my 7 year olds nastiness to his sister to pandas. I know some is just normal too.... He can go from being completely sweet and kind to the complete opposite without much notice.. and she now reacts to everything with such an extreme reaction... but is it learned or not, I don't know.... and I keep thinking what a ridiculous combination to have more than one pandas child who push each others buttons and randomly meltdown. I just am not sure what stuff my daughter is learning from her older brother and what stuff is her own personality and what stuff is just her being 5 and what stuff she might not be able to control. I know it's awful but I almost hope that if she does have pandas that she gives me a clear cut sign...some clear cut ocd or a tic. It's awful that I would hope for that but it's not that I hope for it, it's that I hope if this is it that I will have a sign that screams at me THIS IS PANDAS.

I think I confused my post. My daughter is 5... my 2 year old was blocking her though.

I have concerns about my NON pandas dd. I just had some standard bloodwork from the ped done on her and it's not all back (lyme, mono, celiac panel...).. the aso titers was back and only 121 (she had typical strep throat both in Sept. and October) I have been finding her impossible, emotional, just constantly a battle and on top of that she always says she doesn't feel well. Her saying she doesn't feel well is the original reason that I had the blood work last week. He just wanted to rule out any of the more obvious medical things first. That said, just now my 2 year old was blocking one way for my daughter to go because he was laying on the floor.. she stood there whining and trying to maneauver her way over him. I told her to just go the other way and she refused. I brought her around the other way and she was absolutely hysterical saying she had to go the other way. I asked why and she just said she had to and she was mad at me and not going to tell me why. She yelled at me a bit and then went full circle to where she would have been if she had stepped over my son... she said it was to get her book but that was there but she never actually touched or took the book. Now she is calm and I just asked about it... asked if she felt she had to go that way and she said yes.. but she said it was to get her book. She just smirked when I said that she didn't even touch the book. I asked how she felt when she couldn't do it and she said sad. I asked if she has been feeling like there are other things she has to do but she didn't really understand. I am looking too much into this right? She has no tics or ocd that I know of, nothing obvious and with her it's just her behavior that is making me nervous. Obviously if I was not already familiar with pandas from my son I would not even be thinking this way.

Wow! I am glad for you that the culture did come back positive. When my ds tested positive for strep without any actual strep symptoms, just a throat clearing tic and emotional liability I was so relieved. It just made me feel not crazy. Phew. That is really great that you are finding such help with your doctors... Hopefully soon it will be something that they all get and can treat.

My son presents with some minor tics and had a short while of some minor ocd behaviors. I have no doubt that he has pandas. I am concerned about my dd who does not have the tics or the ocd either... she is an emotional time bomb. A simple request now will result in a meltdown. She gets strep frequently. I just recognize the behaviorial component I see in my son, in her. I was not able to do the cunningham test on her yet. I regret not doing it on her when I did my son's but I didn't have the same degree of concern at the time. I am definitely watching her and am wondering if there is ocd there that I just don't recognize as ocd. This child is incapable of making a decision, is unable to accept no, will cry and scream for hours. She was always a bit dramatic but she was not always so extreme. Her teacher describes her as a delight. IF I didn't know better I would think she was just a spoiled brat but I can see that she is just beside herself over these things in a different way than the times she just is typical mad about not getting her way. I guess I have no advice, just I know how you feel.

LLM, we used to use post it notes for putting over the sensor in the bathroom. I think those automatic flushers can be scary!

Susan, great news. I am so relieved for you that your trip went so well!

Is it also possible it is just the wrong antibiotic (I know it's too soon now to probaby know that)?