ajcire

LOL... .and your example with the time made me laugh because that is my ds's thing.. the time. There is no estimating in our house... it's all precise. This made me laugh (though not in a truly "funny" way)... that is EXACTLY the kind of thing my ds does. Try saying "It's 2 O'Clock" and he'll argue me into the ground because it's actually 1:59.

It could be anything. He goes into opposite mode... where no matter what is said he says the opposite. He also goes into so, I don't care mode. It's just in a tone that is out of character for him too. The other day this was the morning argument.. keep in mind he was on a schedule, running out of time to catch the bus... He was insisting on chocolate chip pancakes. I didn't have time to make pancakes but offered him the frozen blueberry ones we had, cereal, a bagel, banana, the usual. This was a strange argument from him, not typical. He insisted he would not eat if it was not chocolate chip pancakes and if it was not that he wanted chocolate pudding. I told him he couldn't have that for breakfast but I would send it for him for snack at lunch if he wanted. No.. his bus comes at 8:30. He was not even dressed at this point and when I told him he needed to get dressed he told me he would get dressed at 8:30 so that I had to drive him. I told him I would not be driving him. He insisted that he would not get dressed until 8:30 if he didn't have chocolate for breakfast. It was absolutely the most ridiculous conversation to be having with my 7 year old. Finally he came around, snapped out of it. Later that evening I was talking to him about it and he seemed to have no clue what I was talking about but was laughing at how silly it sounded when I described the scene from the morning. He gets irrational when he is in an episode... like if he doesn't get to have something he says things like "fine than I will never be able to have anything"... sometimes he goes to his room and puts the blankets over his head when he does this too. I would definitely use the word irrational and argumentative to describe my usually rational easy going kid. To the unsuspecting onlooker he would just appear bratty.

His main symptoms that cause problems are his argumentativeness/short fuse. Last year it was severe anxiety at bedtime but that has calmed. He has a throat clearing and I have asked him if he knows whey does that.. if he feels he needs to clear his throat, needs a drink.. he said he just feels like he has to do it. But throat clearing doesn't really negatively impact any of us. He is particularly nasty to his sister during his episodes. He does pay a lot of attention to what to me is trivial details. I never realized that could be part of ocd until reading here. It doesn't affect things but does make him seem a bit odd at times. He is very aware of time and schedules as well. His teacher noted that.. and said she thinks he photogenic (ack, not the word is escaping me.. that might be the wrong way of spelling or saying it) memory... because he remembers all the useless detail. His teachers never noticed anything with his behavior other than that he can appear to be bossy and in charge (his attention to the rules and what not) so I haven't really gotten into any of this with them. They said he doesn't clear his throat at school like he does at home.

I apologize for all my questions lately. How much of this do you tell your kids? My ds is 7. I know he has no idea why I took him for a throat culture yesterday when he felt fine. I know he will wonder why I am giving him medicine later (the culture came back positive today). I have told my dd who is only 5 sometimes to just please be kind to ds because he is having a hard time. That is about as far as I have gotten into this. What should I tell my ds? I don't want him to use this as an excuse when he is behaving poorly but I want him to not feel about himself when he can't seem to help it.

Susan, big hugs! My ds totally humilated me the other day when he was fresh to another adult. He had NEVER done that before. I reacted big time to it. It fits every mold of this though.. he didn't get he was being fresh, he was in argumentative mode... later on he felt awful. I felt awful. Now I feel even more awful. I wish that the adult it was to was one that was a close friend because I would have explained it as best as I could but there is no explaining this to people.. I dont' even get it. I don't want people thinking my child is that kind of kid because he's not. He's a really good boy when he's not in the mist of this. I could have written this this morning. DD and I have been getting into it so badly. Sometimes it's hard to believe that she can't control herself. I wonder how much more I should be doing, how much less I should be doing, how strict, how understanding. But she's driving me crazy. This morning, I told her that her behavior was going to ruin our relationship. Now she's afraid I don't love her any more. I would give anything to take those words back. Susan

It seems like a cruel joke that one of my children is very prone to strep and gets classic strep often and my other has pandas.

I took the kids for cultures yesterday. Rapid results were negative. My dd had a sore throat, my ds who I believe to have pandas has had a very bad week with behavior and throat clearing.. Today I just got the call from the pediatricians office and I don't know if I should cry or be relieved. I mean, part of me is just relieved that ds did test positive. It's more concrete, I think that even though my dh won't say it.... I think he believes me now. BUT this morning dd had said her throat was fine... I had her at the dr. yesterday so I sent her off to school... Ds had no real strep symptoms so I sent him too... he didn't even get why I took him to the dr. yesterday in the first place.. Ds must think I am crazy too. So normally when they have strep as soon as I know I keep them home till they have been on antibiotics for the 24 hours... that goes for strep for my ds too right? it's still contagious strep even though it's not affecting him that way right? I mean, I can't keep him home every time he acts a little off to me but now that I know? When you know it's not your child's fault but you can't stand the behaviors... how do you cope with it? I feel so guilty for taking away some privileges from him when I now really know it was not his fault

I think I will make sure to keep this on hand. I hate medicating and am afraid to just do things on my own but for a few days to just see if I see a difference I am definitely ok with this.

No, he is always willing to take the liquid easy.... I just use the little medicine cup. He was willing to take 5htp when I needed him to if I opened the capsule and mixed it in his water... to me that was just gross but he didn't care.. he tried to swallow the pill one time to appease me but it didn't go well for him and he won't try again. Do you use a syringe to give liquid meds? My daughter learned to swallow pills by us putting the pill back on her tongue and then giving a couple of syringes of water. Once she learned that pills don't taste as bad as liquid meds, she really took to it. We still give pills this way.

I don't know if anyone else knows more about this but at one point my dr had suggested 5htp for my ds. He was having sleep issues and he felt it might help with that as well as mood issues. I can't say for sure if it helped because we used it at the same time that he was first put on antibiotics... so not sure which it was or both but something at that time worked.

Thank you again for taking the time to explain all this. You are all such a wealth of information and incredible for sharing it. I have tried to teach him to swallow pills but he refuses. He used to take 5htp and I tried to bribe him to swallow it but it didn't work at all. I will definitely give it another go though.

Thank you all for your input. I am skipping it. I let them give my 2 year old it because of his asthma. They said his thermerisol free... I am very upset with myself that I did go ahead and let them give my dd the vaccine too.. hers was not thermerisol free (they told me they only had it that way for the under 3's at their office).... they said there was a small trace of it in dd's. She does not exhibit pandas symptoms or other issues but I do hope I didn't do anything harmful to her by giving the go ahead. I did not give it to my pandas ds yet and am feeling better with my decision not to. Next year I will only be giving it to my child with asthma at the pulmonologists insistence. And I am relieved I didn't end up finding the flu mist like I was trying to for them.

So if this reduces swelling why can't a neurologist just see pandas in an MRI? Forgive me if these are silly questions.

He won't swallow a pill.

That is interesting. I wonder why he suggested the mist over the shot.... Glad I couldn't get it at my ped or I might have done it already. I am going to skip it for him altogether for sure. The dr. had said he felt if he got the flu it could trigger a flare up to though.

The dr. I saw for ds about pandas told me that if I got him the flu shot to get the flu mist. I did get my 2 year old a flu shot because he has asthma... My ped office doesn't offer the flu mist and it's a pain to get to this dr. for the flu mist. Did anyone here give their child the regular flu vaccine? Should I be skipping it altogether like I always have in the past?

Thank you! Do you just use children's advil? I am guessing if I have him on an antibiotic that I should not though so that I can tell which is working if anything is working? I am hoping to have him on an antibiotic within the next few days if my plan goes as I am hoping. Guessing I should hold off and not start advil?

Can someone tell me about advil? I just noticed someone mentioned it as something to try. Is it safe? How much? My ds is 7 and 51 pounds. I am taking him in today for a strep rapid test and culture and then if negative will be trying to get the other dr. to put him back on zithromax anyway but am curious about the advil.

Wow.. I totally get what you are saying. That is what I am going through with my ds. It's hard because my dh is still saying it's just him being a boy but what you are describing are the symptoms I am dealing with. No matter what is said he says the opposite. It is so easy to blow it off as just a behaviorial issue but at heart I too know it is more... We also see some tics only pop up during this time... usually in the form of throat clearing for us. You really described my ds though.. he is 7 and while in some ways seems too mature in other ways it is immature. The mouthiness, the quick to erupt over nothing.. it's very hard to explain it to people especially when your child is usually a kid people like to be around. I am here learning from all these amazing parents too...

Oh goodness. Are you not supposed to mail that? Do they ask if it's anything liquid fragile or hazardous like the post office always asks me when I mail things?

I agree it could just be denial... I can't tell if he just truly doesn't think anything is wrong or if he just doesn't want something to be wrong. That is a good question about if she writes a script for it. If not though I do wonder if the dr I saw for pandas would be willing to do it except that when he ordered bloodwork for my ds I know he sent me to a lab for it and did not do it in the office so I don't know if that means he won't for this.

Currently he isn't really showing ocd stuff... it's more his mood, constant negativeness, when in this mode everything becomes the opposite, he becomes irrational at times to the point of ridiculous and then it's over as it if he was fine and nothing ever happened. I notice he starts paying extra attention to details of things that just don't matter, talks about things from a long time ago that are just not relevant anymore, things like that... and lately while he is going to sleep ok and just asks us to check on him, he suddenly won't go upstairs by himself anymore once early evening hits. And he is doing some throat clearing. I do feel almost silly about this stuff when I see how extreme and difficult it is for some children.

Thank you! I am going to ask the dr. I saw regarding this last year if he is familiar with this test at all. Do you know if there is a good link to information that I could share with him if he is not familiar with this?

Vickie, yes... socially my ds sometimes stands out and sometimes doesn't. His teachers have said that he is not the odd kid out and it's just that he is at a different maturity level (they say he is more mature but in some ways it almost seems immature to me...although I know what they mean.. he really does well with adults... they say often they see this in bright kids... I mean, I am a special ed teacher although now I stay home with my kids and my class was made up of autism so I of course at one point was concerned about aspergers but have am no longer at all concerned about that despite certain quirks of his) I don't know why he is so head set against this idea other than that I do know often it's harder for men to accept that things aren't fine (not always, I know that ) The only other thing I think is causing some problems with him getting it is things like how you said your non pandas child is saving garbage... well, when I first mentioned the concern of him saving garbage a few people told me their kids did that (kids with no other issues) and the sleep thing... well, we were at a friends barbeque the other day where 2 other parents of kids his age mentioned they were having trouble getting their kids to not come into their beds... so he says lots of kids have sleep issues or things like that... He's right but in my heart.. I know this is different. quote name='Vickie' date='Sep 20 2009, 09:27 AM' post='38601'] Quirky is the exact same word I use. My son doesn't have any fine motor problems at all. It's actually a little funny you mention hoarding garbage and tags. My older NON-PANDAS son does that. Now that I know more about OCD, I am nipping that in bud now. I see so many things in a different light than I did a year ago. Also, even when my son was in the middle of PANDAS episodes, he behaved well at school. Not very social, but behaved well. Everyone's stories end up melting together for me. Can you once again explain why your husband does not think your son has PANDAS or will not entertain the idea?

This might sound like a really dumb question but how do I overnight it to them on ice? Do you know if it's hard to find a lab that will do the blood draw or not?