ajcire

No it doesn't say why PANDAS was ruled out...but what other reason can you think of? Honestly, if someone has Tourettes, how can you conclusively/quickly say (without a good antibiotic trial, steroid trial, Dr. Cunningham lab test etc.) that that person does not have PANDAS? You can't...just the was they said "our son is not a candidate for PANDAS" makes me think they just did an ASO. You are most likely right on that. I wish it was so easy really rule this out but it's just not

I have called around to other local offices.... they all told me that there was not enough evidence that strep was connected. You know 1 even told me that if you wear a red shirt and fall out of a tree it doesn't mean you fell out of the tree because you wore a red shirt. UMMMMM... But there are 5 drs in my current office. I had asked 4/5 of them their opinions and 3 of them didn't buy into Pandas. I will say only 1 said I was crazy. The other 2 didn't offer me help but were willing to culture whenever I needed and treat if active strep and told me that they understood my having to do what I have to do as a mom. And 1 of them said he believed in it but it was out of his realm.. he had given me the name of the other dr. I saw who turned out to be a more holistic type dr. I really appreciated that dr... but darn insurance. So that left this 1 dr. who I had not asked about it.. and he happened to be the one we saw when I had to bring ds in for a culture... I was so relieved when he told me that he treated kids with this. I didn't realize how little he knows about it though but he admitted it was new to him. I was just so happy that he believed in it. I think basically this dr. believes in it and decided to just give it a try and go with it but doesn't really know all he needs to know. I am hoping the titers test just comes back high to make this dr. happy. I will remain on the look out for a more knowledgeable dr. though!

Thank you for the link. I am going to print and see if I get brave enough to share it with him. The original dr. I saw put ds on zithromyacin first... he used something else (that started with a d I think to get rid of the active strep) and then used zithromyacin but a small dose.. he only had him on it for 3 months 2 times a week but I saw a huge difference and so did my parents who said they couldn't believe how mellow ds had gotten during that time. I am also going to get a copy of my records from the other dr. and share them with this dr. I haven't done that.

I didn't show him anything. He's already starting to twitch when I mention "the other doctor" so I am trying to not turn him totally off. I need to step it up though I know it. I need to not be intimidated by doctors. I don't know why I am having such trouble just saying what I want to say. But part is that I can't get the dr. to sit still long enough.... I am hoping to really get to have his attention next tuesday when I take ds there for the bloodtest. Better yet, I think I need to bring some of you guys with me for support!

Vickie, When I saw this dr. last month I had brought my ds in and he asked why.. I told him ds has pandas and that I strongly suspected he had strep. He did the throat culture and the rapid came back neg so he said if the culture came back neg he would send him for the titer test (when he said it then I kinda just rolled my eyes to myself because I know my ds's showed normal when the last dr. ran it) but the next day I got a call that the culture was positive and he said the positive culture saved me the bloodtest. So his only reason now is because he thinks it can't be pandas if the amox isn't clearing it... grrr....

I wonder what would have happened if 5 years ago when I brought my 2 year old son into the ped office with a constant eye blinking if the dr. had said hey, let's just check for strep rather than tell me it was just a common childhood tic. That might have stopped the rest of my story right in it's tracks. I mean maybe it was just a common tic at the time but maybe.... just maybe we would have discovered strep. So really, when we can't say there was a sudden onset so much of that is because the doctors aren't connecting the dots.

EAMOM, thanks for posting the link Oh gosh, I do hope I am not too late. But either way having sent out the email made me feel a little better.

Thanks everyone! I just sent an email requesting the kit. feedjke, hold on.. I will do a search on here and find you the info..I just found it before.

Gosh, I know someone else's misery shouldn't make me smile but thank you for that. At least you got me to smile. I'm just sorry you are going through that as well.

I want to scream. I orignally saw a ped for this who believes in it and treats it and did run the titers test but did felt it was pandas despite my son's levels being in the normal range.... Great. That dr. is no longer accepting insurance and there is no way I can see him. So I thought it was perfect that I discovered during our last bout of strep that there is 1 of the 5 peds in my regular ped office who does treat this. BUT I just hung up with him out of concern that the amox is not working on my ds... we did 10 days on it for a positive strep culture and now are almost done with another month of it. His response to me was that it might not be pandas then because amox would take care of the strep. BANGING MY HEAD!! I almost wish I didn't know everything I know now from all of you smart parents because then I would not be feeling so distraught right now... I would simply thing oh, ok... it must not be Pandas... BUT I KNOW it is. So he told me to come in and have the titers run again next Tuesday. He says if the titers are not high it is not Pandas... yep... I just kept saying to him "but the other dr. said the test was not as reliable as my observations" ... He said he would try another antibiotic but I know if this test comes out fine he is going to be hesitant to do so because he really thinks the amox should cover this all. Just one look in my ds's eyes and you can see he is not ok I keep taking his temperature because he just doesn't look well. I guess my question is that the last time he had the titers test done it was several months after the time we were struggling most with this and he didn't have positive strep cultures, just my daughter did... This time the known strep was mid September and he's been on antibiotics basically since then. Any chance that even with being on the antibiotics and it being a bit of time from when he had it that the titers might still be high? I don't really understand any of this... I just don't want a negative titers test to throw this all off.. .the only reason the dr. took my word when I told him I needed him treated for Pandas was because I said it, brought my son in with no typical strep signs and had him cultured and it came back positive. He said that is why he didn't send me for the test before treating him at that time. I know I should do the cunninghams test... I just can't doo it at the moment... If I am going to pay that money for it I really need to get my husband to be on board with this stuff and he's not quite there yet. Of course maybe the cunningham test is what I need to get him on board.. kind of a catch 22 I suppose. I guess this was more of a vent than a question. I feel like I got so hopeful with finding a dr. in my regular office and now I am realizing that this likely is not going to be my answer.

Faith, I was wondering the same thing. I was streb b positive when I had my pandas ds BUT I was on the antibiotics for it prior to delivery AND my ds ended up being a c-section. I was on a lot of antibiotics during delivery... for strep b and for a mitrovalve prolapse... He was practically born with thrush in his mouth. I wonder if all the antibiotics caused him trouble?

I hate to sound negative but my guess is that there isn't much point of brainstorming a better logo. I have a feeling they have it pretty planned out. I hope that didn't sound how it might have. Well.. sudden onset is too hard for me to say because my ds had isolated signs of it that until we put them all together would not have screamed pandas. The timing of when I put it all together though, the symptom that was my AHA moment... was 2 days after my non pandas child was diagnosed with strep.

Faith, the only problem with that is that not all PANDAS kids present with obvious OCD. I really do agree, it is slogan that is too overused... if it gets the point across though... I know, you don't want people freaked by strep either. I think it's more like if you are presented with a child that is having issues but you can't figure out what is wrong... this just needs to be on the list of things to rule out as a possible cause.

I just looked as I had never gone to the reviews on the book. Someone knowledgeable should send that reviewer a note... it doesn't say she ruled it out based on the bloodtest though so who knows why they ruled it out. Maybe there are other reasons. Some of the reviews are just disturbing and clearly written by people who should not be allowed to review books

I don't know what I think about the "Got Strep" logo either. I mean it is catchy and quick and will catch people's attention but yes like your children, my pandas ds has never had any typical signs of strep, never a sore throat. I don't know what to make of it. You had good questions. I look forward to hearing their answers.

Great! Really despite some things that we might be feeling regarding some of how she has gone about things she is getting done what really should have been done already.... if she's able to use her new fame to get things done....... hopefully it is not biased and the right people are brought in on the making of it then it can hopefully become a great resource.

oops.. didn't mean to post.

I admire her as well but do question some motives because reality is that now this is a money maker as well for her and sometimes even the best intentions can get lost on the way when that happens. I don't find it odd to have waited on the book really. I mean one would say it's the same reason nobody else wrote a personal account and published it of this. I also imagine it was a work in progress for a long time. I'm sure she has checked out the site over here at some point now.

Oh, so happy to read of her progress... how great it must have been to hear her reading. Sending good thoughts that you just see more and more gains!!

You know what, I think you are right. I was giving her the benefit of the doubt but I do agree with you. Other people's comments are not her endorsing any medical advice... simply they are just other people's comments. I do agree.. unless she has a publicist telling her to be careful. It is very possible that this will become more about the book than the cause. Personally, I think that is a big line of #%$&*! So should we all each post a simple statement, something like, "My son/daughter has PANDAS with low strep (ASO/anti-dnase b ) titers. You might think of not ruling out PANDAS based on titers alone." That is a general comment...5-6 FB'ers each posting a simple line like that one after another might just get our point across....after all she is the one that claims she had heard from only 1-2 parents where strep titers failed to comfirm the presence of strep.

Do most of your kids actually get sore throats with their strep?

Not sure if you guys saw but she did explain why she took them down. I can understand what she is saying although I think that what she maybe needs to do than is not make more reference to that her info is only based on her Son's experience.... so she should not imply that low titers equals no pandas... .. but rather just state that she doesn't know but that her son had high titers. Here is what she posted. FYI: I need to be extremely careful about 3rd party posts endorsing medical advice/positions. I can only vouch for Sammy's story, and this is not a blog. General comments such as "my son had this" or "you might think of that"...; are welcome. And others can email you directly through Facebook for more information. But I'll be erring on the side of caution, so please keep that in mind when you post. Thanks!

My ds doesn't. If anything his is more high but I think it's because he often changes his voice a bit when he talks (I am always telling him to talk in his regular voice).... Currently he is in major throat clearing mode

Wow Vickie, I had not heard that about NY... I am in NY and I really hope they don't mandate it here. I did cave and got my youngest nonpandas ds the shot because he has asthma and the pulmonologist was really adament about it but even if I wanted to for my other 2 I couldn't right now. It is just not available. The pulmonologist had it for my asthma child.

Do you think the sign means that they only have the mist.. no shots, no exceptions to it? Because otherwise that sign makes no sense.