ajcire

I find that my pandas ds does behave different depending who is around... he has no trouble at school at all... and I suspect my dd has pandas as well but it's not confirmed... she definitely is having more problems with me than with my dh or anyone else. It's very frustrating.. when it is worse for me it appears to be just bad mommy parenting which makes me crazy.

Is this the type thing that allows for questions and answers or is it just a presentation?

Faith, I think you should do the pre-antibiotics if you can. I don't think it will hurt and you don't want to look back later on and wonder if you should have. My ENT said it was not normal protocol but he was willing to based on the information I gave him regarding pandas and when I told him that the dr. we saw for the pandas recommended it.

Wow! How totally awesome that your pediatrician is so in tune with this. That's really great. I think that many of us in hindsight can say we saw the pandas earlier but it wasn't until later when we had more of the puzzle pieces to put together that we were able to see the big picture.

I have just started reading The Explosive Child. I have only gotten to the beginning where they describe the explosive child so not sure more on it but am anxiously trying to get to where they talk about how to parent them! I have heard good things about the book but can't talk from experience with it just yet.

Thank you for sharing that! I have my non pandas dd scheduled for it in March.. and am still debating on it for my pandas ds. I am very nervous about it and it helps to hear that it isn't so bad. I hope your dd continues to get well!!

YES!!! I just started that book the other day and I said the exact same thing..I was thinking... goodness... I wonder if they know they have pandas!

I don't really get any of this but your psychiatrists theory doesn't take into account that maybe it doesn't cause mental illness in most people but someone with "allergies" to it... I mean peanuts are harmless to most people.... doesn't mean it can't cause death in others...

My ENT thought I was talking about the bear too.... he had this puzzled look on his face until I cleared that up! Interesting about the strep tests because my pediatrician said he has been sending in every single negative swab for a culture for over 20 years because he felt it was necessary.. my kids are prime examples of that.. negative rapids, positive cultures... He said now over the last few years his colleagues who used to tease him about his sending out the cultures are now saying hmm..maybe that was not such a bad idea afterall.

Hmm... my husband covers his ears when I speak too Pretty sure though in my case he is practicing his selective listening. ...... because I get this alot too, dare I admit it. When I'm trying to get my point across about my son and what he did (or didn't do), I start to go up in octave, and my husband likes to put his hand out sort of indicating for me to lower my octave, you know, like a maestro does.......he did that the other day when I was cooking and I said "I got a KNIFE in my hand you know!" ........

I know my dr. said that we would get a negative on strep culture if he was on antibiotics even if he had it.

When you talk about lyme and the antibiotics and symptoms getting worse.... do you mean for a long time or even just a few days? When my ds was put on azith this last time when he didn't really have many symptoms going on he had several days that I think he started to show them... but the dr. said that it was not unusual for that to happen for a few days.. it shouldn't have lasted more than that but a few days didn't concern him. It did get better but I would say it was almost a week that I was questioning what was going on. It wasn't awful..... and I wasn't even positive if I was right that it worse. I know this is so frustrating - I feel your pain. We too are doing every test we can to build the case to keep us on track with doctors. I agree with Buster and others that you should get this testing done. Lyme is very serious. We have started to pursue Lyme treatments, becasue it is impossible to completely rule out - even with a negative test (although we are awaiting the Igenetics test results) and if our DD has Lyme then the PANDAS treatments can make them worse (steroids) or be like throwing a glass of water in the ocean (IVIG). From what I understand (and we are new at this) very strong long term antibiotics are the only way to cure Lyme. You will know you are dealing wtih Lyme if when you start the antibiotic treatments you get the exacerbation of symptoms called a Herxeimer Reaction. I am glad you are pursuing the Lyme avenue as well. Good luck and Please, Please, Please do not leave the forum...even if your child ends up with different issues, we can all benefit from your experience. There may be others of us whose kids have co-morbidities (they may explain why treatments for some don't work for others) or that are even on the wrong path. We would all rather know than beat our heads down a path with "no returns." As dissapointed as you are to still have unanswered and now even more unanswered questions, you are moving forward on your journey. I know your son is frustrated.... my daughter practically refuses to go to doctors anymore. I have started to have her see someone - not for ERP or anything... just someone to talk to about how she feels about this frustrating debilitating path she is on. The person she see's is just for her - I don't go in... it's not another doctor appointment that Mom is dragging me to, but rather her appointment, her time wtih this person she actually really likes and feels like understands her. the doctor has done wonders with helping her understand that it's not her fault she hasn't been able to get well... and to understand how there could be so many doctors out there that just don't understand how to help her -which is a scary feeling for a kid! Hang in there!! I do have some questions for you and Buster. We have been told to do a sleep study on our daughter - we did the sleep deprived and were told no we need the overnight one.....I hadn't heard about three days... I am curious - you mentioned three days of EEG... what is this? Buster, you mentioned MRI for ADEM, checked for demylination and functional MRI. I have not heard of these. When would one want to get these and where and how would one check for these? Worried Dad (I believe) mentions PET scan. What is the difference between PET scan and MRI? Does anyone know?

So clearly we can determine that not only are parents of pandas kids usually intelligent but they can't sing either... hmm... The puzzle is slowly coming together for me Actually it is interesting to me because my son will say I am yelling sometimes when I am sooo not even close to yelling.

I'm sorry your son is so sick I have no great words but that was definitely well written and explained. I find so much on here I Just can't follow but the way you explained what he is going through just made such sense to me

Thanks guys.. I figured that legally they have to give me the results but I can't get in touch with them to get them.

Indeed he is....

I thought pandas waxed and waned and wasn't constant. I thought that was the whole point as to what made this different?

I had blood work on my kids a few weeks ago but am unable to get in touch with the dr. for the results. Can I call the lab that did it and just get the results over the phone from them or does it have to go through the dr?

I agree... I read "Against Medical Advice" very early into my discovery of pandas and was screaming for that poor child. It was a very quick read... but have tissues handy.

Ack, how do you know if it's lyme like versus pandas or is that basically what you mean? That if we are concerned about pandas we should be considering lyme? I mean I do live in a heavy tic area and we have taken tics off all my kids but ugh.. this is all confusing. If we see a pretty direct correlation with strep and symptoms does that mean enough to not think it's lyme? Hi ajcire, The best Lyme tesst (from Igenex or Clongen Labs) are not covered by insurance. You have to pay for it and then submit it yourself and see if they pay for it. If your child has symptoms that could be lyme a LD doctor might want to treat him even if he has a negative test just to see if it helps or provokes a die off reaction. Then you can retest and often the test will turn positive after treatment has begun. You would likely get an idea if you are going in the right direction within a month or so so its worth a try, especially if the symptoms are lyme-like. Lyme Mom

Interesting.. my kids are the opposite, including the one believed to be a carrier... my kids almost always rapid negative but then the culture is positive. So, they were sending out for cultures on positive rapids? We only sent for cultures if the rapid was neg. The tests were done by the dr. (pediatrician) that diagnosed my son with Pandas- so every time we went into the office for any reason she tested both kids for strep. Then the test ALWAYS came back positive. The dr. never had patients that always tested positive- so she began doing cultures. Well.....most of those came back negative (except for the few positive- when one obviously had strep throat). The pediatrician then referred us to an infections disease dr. who said they are carriers. That was years ago and both have had plenty of negative rapids - but they still get both tests done.

The dr. believes my ds might be a carrier... his aso titers from Nov were 480 but he had a positive culture in Sept. I am waiting for results from bloodwork done in January. He gets strep throat, cultures positive but without the sore throat/fever.. has never complained of a sore throat. I am not really sure if he is a carrier or not. He has tested negative before. I don't know how the carrier is defined. I've never tested my ASO before, just not long ago, did once and it was high. Yes, after strep infection, ASO would be high. But I did not notice when I got the strep. I guess maybe my ASO is always high. Doctors here said maybe very high percent of adult have high ASO, if it does not show anything wrong with it, don't need to care about it ( I don't know if this is correct or not). I am just thinking not to infect my son if I have strep. My daughter is a carrier. Her ASO & AntiDnase have always tested low. I think carrier would be chronically culturing positive for strep, without active infection (symptoms of strep throat).

Are the lyme tests you are talking about not usually covered by insurance? We had whatever the tests the dr.s normally run done but those came out neg. I see that means absolutely nothing though.

Am I not understanding? I don't see why high aso means you are a carrier? Doesn't it just mean you have been exposed to/had it within a year? The dr. told me it could take a long time for titers to lower on antibiotics.... not sure what he meant by a long time though.

I don't know about amox but I know that my son had not been doing his throat clearing tic when I put him on azith... for the first week on it the throat clearing and behaviors started back up more.... I continued the azith and it did stop.. not sure if it was connected to the azith or not... but the dr. did tell me that parents had reported it getting worse sometimes for a few days before getting better.