ajcire

I posted on his thread but I think it was a good clip that just needed to be a full show. I just think it's impossible to say what we all want said in such a small frame. I was happy to see the few other things mentioned like separation issues and anxiety besides just the tic and ocd but of course that is just a tiny speck of the whole big picture. It is amazing to me how well Lauren appears to be handling all this and what a good attitude she seems to have about it. I hope they can get things sorted out for her soon.

Phew, a clip that was easy to follow and clear for the average person to be able to process. I was happy to see the mention of a few other symptoms besides just ocd and tics but would love to see a few more (lol, I get that is not possible in 30-60 seconds that you were given). I would love to see the other things like a change in behavior, argumentative, sometimes frequent urination, sometime starting with simple tics like eye blinks or throat clearing not just the extreme in lauren and sammy. But I was so happy to see a clip that I can show people to try to explain. The Saving Sammy segments just were so far from what is going on with my son that it just made me look crazy to suggest I thought my son had this. While my son is not at all like Lauren either this certainly led to the idea that it won't just present with a severe tic or severe ocd.

Hi Vickie (It's Erica... I did a name change... I hate to confuse things but hated that I had used my name like that) My 7 year old ds is my pandas kid. MY 5 year old dd does not have pandas to the best of my knowledge. I am getting nervous now though. She had her last strep test the end of last week. She always says her tummy hurts. They just keep telling me to do elimination diets to see if it's that and I confess that I have not done that because it seemed like such a long shot to me and she is picky to begin with.. was worried about what she would eat if I eliminated wheat or dairy (my ped said to pick one to start with first) I had asked my ped about strep in the gut and he said he had never heard of strep causing constant tummy ahces.. he said he knew tummy aches were a symptom of strep in kids but without strep he didn't think it would be related. He's a nice guy but I am guessing he is wrong on that?

I don't know what to make of this and my imagination is on overdrive. My 5 year old dd is the one in my house who tends to get strep with classic symptoms. She has been more difficult lately but nothing crazy out of range of any 5 year old. That alone would not have me concerned but with my ds's history and my eyes wide open I now am remembering a month ago when my dd who is normally like a camel told me that at school for several days in a row she used the bathroom and then had to go again (not an upset belly). She had been going a bunch more at home but it stopped within a few days and still didn't concern me. The past few nights she has been giving me a hard time about bedtime (that was the piece with my ds that clicked our puzzle together). She keeps saying her throat hurts and her belly but I have had her to the dr. and they always do the culture if the rapid is negative. She is complaining sporadically but is acting not sick. She is more clingy to me and emotional but she was always on the more dramatic side. The past 2 days she is saying she wants me to drive her to school, doesn't want to go on the bus but really has no reason. This child loves school and loves riding the bus. She just keeps saying all the time that she doesn't feel good but they don't find anything. Last night she woke up 2 times hysterical about this. She is wishy washy on it being her throat. I really think she just knows that it is a way to get me to come into her. What would you do with a child who keeps saying she doesn't feel well but nothing is showing up and I am not even sure if she is telling the truth now or if its' just become something she is saying. In the past she has been right... a sore throat usually equalled strep. I always take her if she says it hurts.

They are both too cute and so totally sweet.

Tantrums, I hope you don't mind me adding this but if I remember right you did say at some point in the past he did have strep right? Maybe not often but at all? I think you mentioned you had scarlet fever as a kid too right? To me that means nothing but some of the knowledgeable scientific people here might have some thoughts on that.

I'm glad you are able to post now because you just opened the door to such a huge resource. The people here are incredible for information and support. I don't get the science behind any of this and am so amazed at what everyone here seems to know and be able to break down into easier to understand terms. I had a feeling when you saw that ocd list that your thoughts on his ocd might change. Hang in there!

Thanks, I will pass this info on although I know she can read the boards she probably sees even though she can't post What I am finding so fascinating is that they say this is a rare thing but yet I am coming across more and more people not just from on this board obviously whose children seem to have this. I just don't get how the medical community can continue to keep their head in the sand about this.

That is WONDERFUL news!

I didn't remember a delay either but figured I just forgot. I didn't even know there was a delay. Is she sure she is signed in when she tries to post?

I know someone who has recently discovered her ds likely has pandas and she registered but can't post yet. Just curious how long it takes as I don't remember.

Oh, I agree with you... I just meant that since she has already started her campaign I imagine that it would be hard for non public parents to get the attention of Oprah over her since has such publicity now.

I think that Beth (Saving Sammy) has done an Oprah campaign. Unfortunately it might not have the right invited guests but it probably takes the publicity she has to actually accomplish getting to Oprah.

That is a great letter that I would most definitely not be offended to receive.

I would talk to the school about that before you do it. Even having a child with PANDAS I think it would strike a nerve if I received that kind of a note from a parent. I know you weren't including the duh part but it would strike me as duh no matter what because clearly that should be obvious to not send your child to school if you suspect they have strep. I would not mind a note from the nurse with a general explanation that a child (no names need to be mentioned) in my kids class can have serious effects from strep so could we please take any sore throats or strep symptoms seriously before sending our child to school or something like that. Not to scare you or anything but unfortunately my pandas ds does not show any strep signs when he has it. I only know from his behavior and because often my daughter gets it around the same time and does show the symptoms so I know when to have him tested... BUT there have been several times where I had no idea he had it and he had been in school with it. I only found when I decided to culture him because someone else had it that had been around him.

SmartyJones, what remedy did you find that on? i just recently found a homeopathic remedy while looking for one that was similiar to motrin. as i read the description, it sounded like i was writing a list of his troublesome behaviors "it's as if some diabolical force took possession of the brain and prevented it's functions. it causes a perfect picture of mania of a quarrelsome and obscene character. unseemly and immodest in acts. is jealous. lascivious mania, uncovers body. low, muttering speech. clingy and dependent. fears being left alone. crude behavior. loves smutty talk. immodest acts, gestures, expressions. unintelligible chatter. great hilarity, foolish laughter - does foolish things. does things to shock - such as saying doesn't love you or sticking out tongue. rage with unusual strength. strikes out at those trying to help."

Wouldn't it be nice if docs were actually clued in and knew to do throat cultures (and otherwise check for PANDAS) when kids show up with acting like they have a UTI (but don't)? So parents don't have to figure it out years later? EAMOM, definitely... I echo the same sentiment about when children come in to the dr with the eye blink because that too seems to be a big starting place for this. I will always wonder what would have happened if the dr. didn't smile and say ah yes, the common childhood eye blink tic... it will pass and if he had done a culture instead. If only I knew then what I know now.

oops, sorry.. messed up my post.. just ignore

Michael, thanks for taking the time to try to explain it. What you are saying actually is making a lot of sense. I really need to rethink some of how I am coping with my ds when he is this way. Fortunately he is not phsyically aggressive but there have been a couple times right at the onset of an episode where his initial reaction was to swing or push at me. I imagine it took a lot of energy for him to stop himself at those moments but he did. If I ask my son if he has control over how he is acting he says yes but he is only 7 and I am not really sure if he understands what I am asking him.

I agree.. in fact so many of the early signs are just dismissed by the dr's.... those early eye blinking tics, weird phases kids go through.... If that is the case, than she is one lucky girl.... she has no ocd, no other issues up till now at 12 yrs old, then how could she have had PANDAS episodes in the past? I would think something would have been noticed. ... In our own case, we missed the first two episodes when our daughter was 4.5. She had daytime urinary frequency and frequent handwashing until her hands were raw. The daytime urinary frequency, we took her in for a possible bladder infection but they found nothing. It turns out she was put on an antibiotic two weeks later for an upper respiratory infection and interestingly all the symptoms disappeared 2 weeks after that. We never made the connection at that time -- although it was in her medical history. I bring this up because it's actually pretty easy for the early behavioral symptoms to be missed -- or rather we sure missed them in our child till all ###### broke loose in March 2008. Buster

I am able to get him up to his room but he doesn't go quietly and willingly. He screams, stomps and bangs his way up.. then gets in his bed and hides under the covers until he is calmed down. If I go in and he's not ready he stays under the covers and just ignores me.

Faith, I would love a time out. Please, somebody give me a time out. I would love to hear from someone who has actually lived through pandas themselves as to what is going on in their mind at the moment or if it is just beyond their control.

Michael, I hope this is ok to ask.... did/do you have a history of the other symtpoms as well? The argumentative/behaviorial component, being irrational? I am curious if you did, if you were aware that you were being irrational at the time but just couldn't help it? If something is not working for my ds and he is in one of his modes he gets completely irrational about it. If I suggest ways to make it better, fix what's not going right for him he just comes back with his sobbing and an irrational response. If he is in that mode and can't have something he gets irrational and usually says things like, "Then I'll never be able to have XX again" The only thing that gets him out of those modes is time.. I usually have to get him to take a break in his room (involves a lot of foot stomping and door slamming on his part)... then he after a period of time he will totally switch out of it and ask if he can come out of his room.

It is great that another story is out there. The more different pandas scenerios out there the more people will see it's not just if your child suddenly wakes up with complete ocd. Now if I could just remember to NOT read the comments section on those type articles!

aww come on, could be fun. Name that person. But really.. is there a way?