ajcire

I wouldn't possibly be able to keep him out over it every time. It's constant. Plus they don't notify us of strep. I never asked them to but reality is that even when I send in absent notes I used to just say they were sick. They never ask specifics. Plus it goes way beyond just his class... he rides the bus and who knows who has what on that.. he comes in contact with way more than just his classmates. I try to not think about it but it's definitely hard. I am guilty also of always asking if anyone was absent. Worse to me though is that there are soooo many kids in school on days that they should be home from being sick. I have no tolerance for that from other parents anymore Sometimes I think they should be taking the kids temperature as they walk through the door.

Thanks!

Sometimes one door shuts to open the right door for you Yeah!!

Is it ok to do the test when my son will have just finished a month and a half on amoxicillian?

oops.. disregard this

I keep hearing stuff like this. I wonder if it really IS common to see transient tics in childhood (even in relation to strep), but that MOST kids DO get over it, but for some reason in PANDAS kids it doesn't resolve on its own. All these pediatricians being lackadaisical about it...just doesn't seem like THAT many could just be callous jerks. And if it was uncommon- wouldn't you have more pediatricians saying, "whoa, what's up with that?" Peg, I know... I keep thinking about this too. I do know a few other people who told me their kids had the eye blink and their doctors had told them the same thing.. and to the best of my knowledge so far their children are just fine. I keep thinking.. maybe some kids just outgrow it, maybe for some a tic is just a tic as the dr. put it to me...... but what might we have discovered if they had said... you know, just for kicks... let's just run a strep test. I mean, it might have come back negative anyway but .... oh what if... and then at the age of 4 when I went back because he was clearing his throat I accepted their answer AGAIN that it was a common childhood tic. I blame myself for just accepting that. They mentioned I could get an MRI to get a baseline in caes it got worse but seemed to think in unnecessary. I just wish I didn't just let it go at the time.

My ds was waking up hysterical multiple times a night at one point... He was totally fine if I was in the room with him. It was just fear if he woke up and nobody was in his room. My dr. at the time had me try 5HTP. I think it did ease up some sleep stuff, maybe even helped with some mood stuff but not sure because we also started him on antibiotics for the first time at the same time... so while we saw improvement I can't be sure which it was from.

I put it together shortly before my ds turned 6.... but his first sign likely related was a the age of 2 when I took him to the dr. over concern of a constant eye blink. They told me not to worry about it, that it was a common childhood tic that he would outgrow. Ironically the dr. actually said to me that I would probably see it be bad for a while and then it would go away and come back again.....he said it like that's normal to happen to kids... GRRRR..... In hindsight I should not have accepted that it was definitely normal. A normal tic.. what the heck did I think was normal about a constant eye blink... GRRRR....

WOW... that really sounds like what I think I am seeing. I know this might be a stupid question but what is SED? and what does it indicate if it's high? Maybe I should have gone in and begged them to do bloodwork? I have an appt tuesday for him to have a titers test (ugh I know.. this test is going to shoot me in the foot big time) but if he still has the that low grade stuff going on... .hmm....

Yes my son is fair skinned.... dark brown hair but very fair skin... those dark circles under his eyes And YES his BEET RED ears usually give away his fevers.... In fact he came home from school a few weeks ago with fever and I couldn't imagine that nobody at school thought to have the nurse check him just based on the color of his ears... I have been checking him a zillion times a day all week and keep saying to my mother that I just can't figure it out. He woke up today and his temp was 98.7.... I am sure I won't be able to keep myself from checking when he gets home from school. I guess I haven't given the motrin because I have been trying to see if it was going to go up but it just isn't.. I should have done the motrin for sure yesterday. Also this morning for the first time he startled me out of a deep sleep (around 4:30) with clearing his throat... I have never noticed him doing it in his sleep or being woken from it...

Worried Dad, that is absolutely fantasticly wonderful! I don't think there is any doubt that Beth Maloney has and will help so many children.... even those who are not loving everything about how the foundation is being done or some of her information I am sure would agree that she has done an incredible thing with her book for so many families.

So far I have had no need for it here but my ped had mentioned that tamilfu should only be used in kids when really necessary because sometimes there could be big side effects... he said he only uses it if he thinks the benefits will outweight the possible side effects. He never said what the issues were though.

Goodness, I could have posted that exact thing right now. I have been trying to figure this out. He has been running a low grade fever..... goes from 98.7-99.7 I can't figure it out.... I took it yesterday expecting it to be 110 based on the way he looked but he says he is fine, feels fine.... and it was 99.6. If I call the dr. about 99 fevers they will tell me that is not a fever... but I know that when nothing is going on at all my son has a typical temperature of between 97.6-98.6. I have an appt on Tuesday and am going to ask the dr. My personal feelings are that something is not right.. that his normal body temperature is not in the 99 range... of course whether that is now connected to his increase in throat clearing or not I have no idea... He is on antibiotics already so I guess I just keep thinking it must be something viral. This is not the first week I have noticed this....... it has gone on before and just finally gone away but it's starting to bother me. Ds also has a rash on his cheeks that one would look at and say is a rash but that it's just because he has sensitive skin. He doesn't really have sensitive skin though but that's what it looks like. I will be asking about that too on Tuesday. My mommy gut wants to call today and take him in but I am really starting to appear neurotic. Between my 3 kids I have called the office almost every day for the last 2 weeks for something.

A quick search brought up this.... http://www.bio-medicine.org/medicine-news/...ps-Autism-28-1/ Meanwhile I have been wondering about the opposite thing with antibiotics and autism. I have a friend whose 3 year old is about to be diagnosed with autism (she is in the mist of evals but there is no question about it that he will get that diagnosis) and he was on heavy antibiotics for the first year of his life due to kidney issues. I did a search and saw people questioning a connection between the antibiotics and autism.... so wouldn't that be contradicting the other that the antibiotics would help? I am probably not making sense...

I kinda suspected that

I already clicked yes on the Pandas Mom review It was very well written.

I am sure this has been answered someplace. Sorry for the repetition. I know cunningham had it on her site that sometimes it is triggered by a cold or other things and I know most of us have seen symptoms that were not just triggered by strep... but why would antibiotics work if it is not strep or bacteria triggered?

Hopefully it's not just making nice. If she really starts to get that low titers mean nothing it could really affect how things turn. I think her response was good to it. I mean I don't know her true intentions or anything but crossing fingers....

Peg, Dr. Cunninghman contacted your ped for you? Maybe it would be easier for them to "get it" if you parallel it to Rheumatic Fever... if you'd had it, you will be kept on profilactic antibiotics until 20 or 25! RF is a well known and no one would argue with that, since the risk of getting it again is pretty high. Just explain to them it's the same thing, except the antibodies are going for the brain instead of the joints. With that and a few good articles, they should get it. Good luck! That's what Dr. Cunningham told my pediatrician...that it's like RF of the brain!

Faith, I am glad you have something concrete to work with now! I have to say that I am now almost more nervous to do this. I don't know what I will do if it is confirmed, where I will go with that. Do they give you something that clearly explains it all that if I needed to show to a dr. not familiar with the test that they would understand what the results mean?

Thanks everyone for the encouragement to go through with this. feedjke, yep you pretty much have me pegged only my home will show all signs that I am not ocd on neatness... Megsmom, I was thinking the same thing about the results only I think I will be going to my ped for the blood draw IF he is willing to do it so I guess he will know I did it... I don't think the lab will do it for me. I printed out the stuff that Dr. Cunningham just sent me (She got back to me fast!) and planned to bring it to my dr. to show him what I would like to participate in and ask him to do the blood draw but maybe I should really search elsewhere and leave him out of it? I don't know if I can get it done without his cooperation. P.Mom, Yes... my son presents like yours... really mild. In the past some very mild ocd that has not come back, fidgety -can't stop moving, and throat clearing as well as needing us to "check on him" at night. I also can just see it in my son's eyes. If it's not always just strep causing it, than why do antibiotics take care of it? And another question: If I should do the cunningham test during an exacberration (no idea how to spell that) but he is mild and I am not sure if this is a full one or not do you think I should just go for it and not wait anyway? I mean, he currently has an increase in the throat clearing that he always has during a positive strep culture (his last positive culture was mid september and he's been on amox since). He definitely is having some of the behavior things but mild. Enough is going on that I know the amox isn't working though... so I guess this counts as as good a time as any for the test even if we aren't in complete crisis mode here?

Ack, Vickie, not sure how I missed that.. I think I skipped that whole page. Yeah, they sure did avoid your questions. I personally will not join anything until I know what information they are spreading. I am also concerned that they are only focused on ocd. That is not the main component for my ds and I am guessing that it is not for many others. The problem is not really the lack of doctors having heard about PANDAS... it's the lack of doctors wanting to accept that it is real. I mean, every doctor I spoke to had heard of it and already had a strong opinion formed on it. I also know that if you have the mentality that one vote doesn't matter than you can't make a change but I feel like this is such a small group of people here. I don't know that we here could make a dent in anything to do with that foundation. She will have a HUGE following of people who saw her on t.v and then read the book and just take all that in as the end all be all of PANDAS. When I first saw her book was out I was so hoping it would be something I could then share with people close to me to help them understand what my concerns are with my son but I quickly saw that I could not share it with anyone (except my mother) because they would look at my son and think it was clearly not PANDAS for him because he is functioning fine and not horribly OCD. Don't get me wrong, of course her book would not be about a case like my son and I get that.. and I really think she did a great thing sharing her story and I am sure that by doing so she has already helped many many families but if that is the only form of PANDAS that will be getting the attention it is only going to make it harder for those with kids who are not like Sammy.

I agree Vickie. Did you get a response to your questions yet?

I think part of what I am concerned about with the cunningham test is it coming back normal and me having no direction to go in. I mean, I would love for this to not be PANDAS but I actually would rather it be at this point because at least it's an answer. I know something is wrong, it screams PANDAS but what if the cam test comes back fine... Anybody get results not indicating pandas and what did you do with that information?

Ack.. just edited because I got uncomfortable with posting that. Not sure why I did but figured it was there long enough for anyone to see as my response so I could comfortably take it down