ajcire

Hmm.. My ds is not on the spectrum but yes his quirks used to really concern me. He doesn't always make eye contact, you can see he gets very uncomfortable when put on the spot to talk to someone, if a friend says hello to him he gets uncomfortable if it's in a setting where he is now on the spot to respond... if he's out playing with the kids, he's fine. Often people mistake him for being rude when he is just genuinely uncomfortable. I has asked a psychologist about this (prior to knowing about Pandas) and she told me that he was just fine... and that often really bright kids were quirky but that really everyone has their quirks. I can't figure it out really because sometimes he has no problems looking at people and talking and other times he looks like he wants to just jump out of his skin from it. His teachers have said he presents just fine with his friends at school and that he doesn't stand out as the odd kid despite being a bit quirky.

Ah, I didn't know anything about kawasaki and I had never even heard of IVIG until pandas. That is interesting that kawasakis might be connected to pandas and I could see why you might be concerned. That said it is so hard to tell what is what anymore. I know the other day a friend of mine made reference to how her 7 year old ds seems to have regressed and is such a cry baby (not a pandas kid, just a typical 7 year old) and I stopped and thought.. goodness, what if some of what I think is the pandas in my ds is just typical 7... but my gut still is telling me that I can tell the difference in when he is just having kid meltdowns versus pandas meltdowns.

What made them do IVIG on your younger ds due to fever? It's so hard. I have a non pandas 2 1/2 year old and some of what you describe sounds like the age of 2 and some sounds a bit more than just the age of 2. Could you run the cunningham test on him to get some answers? I actually asked the same thing a while ago because my non pandas dd was starting to make me nervous and had strep. I think, and HOPE that I just am so aware that I am starting to see things that aren't there with her.

Stephanie, your children are beautiful!

"She also - when she can - tends to verbalize opposing concepts in the middle of attacks. For instance, she'll say, "I'm hungry!" and you'll say, "Here, there's food on the table." And she'll yell, "I'm not hungry!" And you'll say, "Okay, well the food is there if you want it." And she'll say, "But I'm HUNGRY!" and so on. There' s no logic to it. It's like two opposing forces are warring in her brain." Ok.. now I am really wondering about a specific incident when my ds was just 3 years old. At this point we had seen eye blinking only... and that we were told was a common childhood tic and I didn't know to question it. But oh gosh, we still talk and laugh about this one... Ds was 3.. and I was trying to get him to eat something. He insisted on sitting in the living room and I said ok... but then he realized he didn't have a fork. He started screaming he needed a fork. He wanted to get the fork himself but refused to get the fork himself. I got the fork for him and he started more hysterical. He was screaming that he needed a fork, needed to get the fork himself but was not going to get the fork. I was home alone with him and called my mom on the phone so that she could hear what we now lovingly call the fork incident. I think I needed someone else to hear the insanity. The incident only ended when he finally passed out on me from exhaustion. Now when ds is having those opposing concepts in his head that you are referring to we always say he's having another fork incident. Of course I will never know if back then when he was 3 if that was the beginning of this or if he was just overtired and having a bad day.

Weird. My ds is pasty pale and has dark circles too. In fact the pediatrician always said that ds looked like an allergy kid yet he had no known allergies.

Susan, I think that is definitely some of what I keep wondering... the ocd stuff... at the time it was happening I had no idea really what it was... just thought he was doing some quirky things and it wasn't hurting anyone. Then it just stopped... it wasn't anything that we did.... and I guess I am holding my breath wondering if we will ever see that stuff again (hoarding, handwashing and who knows what things I didn't even realize were going on). I guess if it does I will be better prepared and hopefully recognize it quicker. Ok, that's great. We use ERP for very mild symptoms as well - but that may not be necessary in your case. We hope not to have another repeat of this, but after 3-4 times, we are fairly sure that we'll have more times and it take a little while for treatment to work. Hopefully, I will be wrong about that - we are just planning for the worst. As I look back on the time between episodes, I can now see a good bit of OCD (maybe 5-10%) that was then magnified in the next episode. For us, each one seemed to build on the one before. Glad you are doing so well!! Best - Susan

Shannon, exactly! You just said it better than I was able to express. It sounds like our scenerios are very similar. I always use the word quirky when describing my ds. Only deep down I know some of them are not just quirks but are pandas.

It is interesting to seem certain things. My ds does not have aggressive rages. His are more where I say he is melting down... or having a completely irrational response to being angry or upset. I know it's not funny but during some of those times when I feel like losing it I just stop and remember what my mother once told me...."You just can't reason with a crazy person" I do hope that isn't offensive because I am not implying our children are crazy.. but somehow it helps me when I am trying to reason with him and getting angry over it. My ds's are not physical but still it's like he is jumping out of his own skin. He becomes irrational. If I say he can't have a chocolate cake for breakfast he might respond with, "Fine than I'll never be able to eat again." I remind him I didn't say that but it doesn't matter.. he is no longer with me and is responding crazy and irrational. Fine, then I'll never is a fairly common phrase from him now. I know how mild and silly that scenerio seems but just showing how it presents in my more mild situation. I can see it in his eyes though that sometimes he wants to lash out but somehow he manages to control that with me. The only time we saw serious aggression was when it first started and he was going through sleep anxiety and we thought it was just behavioral and tried to make him stay in his room alone... We saw a child we had never seen before during that time. He also does something weird where he will intentionally say the opposite of what he should. When he starts his obnoxious opposite talk I start trying to figure out who has strep. He sometimes will run to his room and put the blankets over his head, or covers his face with his hands if he is not able to go up to his room. It often usually involves a certain tone that he yells in..different from when he is just upset like we all get sometimes. It's like a tone with no inflection. He also starts with talking opposite... like he says exactly the opposite of what he knows he should be saying.

Not sure if my question is going to make sense but I wondering if the intensity/symptoms usually get worse? I don't want it to sound like I think I can ignore the current symptoms of my ds (Age 7) as I don't but because I am dealing with a husband who is not totally on board and a ped. who is open to this and says he has a few patients with it but doesn't know much about it so he knows his one way that worked with those patients to treat it (he says amox which I am afraid isn't doing it) I just am curious as to what to expect. Ds's symptoms are really mild and some are so subtle that even I sometimes am starting to question myself (although I am so beyond positive that this is what it is and can see why my dh is not quite getting it). I guess what I am asking is will this get worse or is it just that this is the way my ds's symptoms present and I am fortunate that it is not extreme? Main symptoms that got me realizing it was pandas...all figuring this out after a bad year of strep in the house- frequent urination, throat clearing, history of eye blinking, handwashing, garbage hoarding, emotional/irrational, sudden onset of sleep anxiety (needing to have me in his room). Those symptoms are for the most part much better.... we had done 3 months on a low dose of zithromax with a different dr. than we see currently. the mild handwashing had stopped even before that, as did the garbage hoarding... I had not realized that was anything until after I discovered Pandas... gotta love hindsight. Now mostly we deal with him just needing to ask us to check on him at bedtime (no big deal), still can get irrational and have sudden emotional outbursts but only with the immediate family, constant attention to detail, and throat clearing is still present after we deal with strep. He gets strep with no symptoms. I know to check based on his behavior as well as any time someone in the house has it. Unforutnately my non pandas daughter gets it frequently. I hope my question is making sense.... I am trying to have it treated right but until that happens will things get worse or likely stay as is.

Do you mean the amox didn't work for your child?

I have a feeling that if you go into most regular ed classes and really started to look at this that there would be at least 1 potential case of this in each.... unfortunately I think how common this is, is being totally missed because it's such a broad range of degrees of symptoms.

I can't even imagine how hard it is to get the right attention on this from your doctors when she also has the diagnosis of autism. I am sure it is easy for them to brush things off as just part of that even when you know as her mom. I taught special ed prior to having my children and my class was made up primarily of children with autism..ages 13-15. I was just talking to my assistant from when I was teaching about all this. I can think of 3 of my students who if I knew what I know now I would have suggested they just rule out any possibility of strep being an issue.. just because what would there be to lose to check into the possibility versus what could possibly be gained. It's been over 8 years though since I have been teaching though. I would be a much better teacher in general now after having kids of my own and after now being frustrated trying to figure out what is going on with my own child.

Peglem, no need for an apology. I debated with myself before posting it for the very reason of how simple they are making it all sound. I am fortunate that my ds's issues are really quite mild and so subtle that I am starting to doubt myself sometimes... but I do feel very certain this is what my ds has. It does seem like it is easier for those whose kids are older when this comes on suddenly in the sense of at least they really can see the problem... I know this supposed to be a sudden onset but the sudden onset for my ds was subtle things that I only recognized in hindsight... I mean, we all joked when he was hoarding garbage and blew it off... I didn't know what I know now.

Oh I know. I was thinking the same thing when I was reading it.... and that if someone who knows my child and saw this they would think I was crazy for thinking my child has PANDAS because he presents so much more mild and just different than those stories.

Not sure if you have already come across this.... was searching youtube and came across it. http://jamiesstory.wordpress.com/

How would I know if he was having problems with yeast?

Ds is now on daily amox. Should I be giving him acidophilus and if so, does it have to be a certain time from when he has the antibiotic. He takes the amox morning and night.

Thanks! I feel a bit better because while ds just finished his 10 day course for strep he is now on a month of amox. and then the dr. said we will evaluate what we should do next. I forgot the strep test would not be accurate with the antibiotics. My daughter does get classic strep signs (so far no pandas but I admit I got a knot in my stomach when you mentioned in case she should.. cause sometimes I am starting to wonder).

It just occurred to me that we have never been told to have any of us rechecked after being treated for strep.. none of the doctors I have seen with my kids with strep have ever said to come back after a certain time to retest.... Am I the only one who has not been doing this?

Another low titers one here... I wonder how his titers would be though if I had the bloodwork done closer to when he actually had the strep. By time I had a clue as to what was going on with him, it had been quite a while later. This last time his dr. said he would do the bloodwork if he didn't test positive for strep (he had no classic strep signs.. just a sister with strep and his behavior and tic were back) but he tested positive so no idea what his titers were. I am in awe of how much some of you know about this and the science aspect of it all. I feel like it is a foreign language still.

Kim, I just meant I would hate to think they were administering the vaccine during school hours even if I didn't want my ds to have it (which I don't).. I mean I know they wouldn't give it to my ds without my permission but still. I see that the schools are not doing it that way.. sounds like a parent has to be present in the district someone mentioned here. Now totally bizarre coincidence if you ask me but my ds came off the bus today looking totally wiped. He had 101.5 fever. No symptoms at all as of now. I really would have bet money he had h1n1 in June but I guess I am a bit on edge right now wondering how this fever will play out. I will say he sure is mellow and enjoyable to be around despite that...crossing my fingers. Just wondering why you think you would have to OK it? Is it that you think the flu is more of a threat than the vaccine or that you are thinking that your child wouldn't be allowed to stay in school? You don't have to ok it for sschool attendance at this point. Reading through everyone's remarks, I wanted to say that I almost started my oldest son on a z pac that Dr. sent home with us. He said not to give unless he seemed worse. Yesterday he came home from school early saying that he was coughing so hard that he couln't catch his breath. This morning he seemed ok, but I'm edgy about it. Still think starting the antibiotic might be wise. Strep was negative here too and neither son has had any fever, during the day at least. Maybe low grade that I didn't catch. I posted here somewhere that 50% (think it was 50%) of original H1N1 cases didn't have a fever though, even some of those hospitalized with respiratory problems. I have to wonder if this whole thing is really sound health based treatment, why no confirmed H1N1 cases with swabs at least? I read early on that they should be stock piling anitbiotics instead of vaccines as pneumonia was going to be the real threat. Again, if this was circulating all summer within summer camps and other places that kids gathered in close contact, why wouldn't we be seeing it now, with most schools being back in session for around a month. If what my boys had was not H1N1 and it circulates back to back with this virus, well that scares me. This doesn't seem easy to shake although not that much different than any other respiratory illness. One thing everyone who has had it keeps saying is that the sore throat is an unusally sore throat. Very painful

EAMom, that is interesting too.. I wonder if we or my other kids did have it and just didn't even realize it. I wish I knew just so that I wouldn't have to worry about it at all now. Ugh, I hope our schools don't start administering it in school... I mean, I know I would have to ok it but I just hope they don't offer it there so that there can be no mistakes about it.

Yes Shannon, the closet door has to be closed too... I figured most kids including non pandas needed that... the whole monsters under the bed and in the closet thing...