Kayanne

It is still possible to have an active infection after 30 days of zithromax. Some antibiotics are not effective against some bacteria. Did your son have tests to try to determine what the underlying infection is? An active infection could be one reason for backsliding--still have strep, mycop, or lyme. Also, another possibility could be that the prednisone was just not enough to halt the autoimmunity or "reset" the immune system--indicating either more pred or moving onto the bigger gun treatments. My daughter has seen excellent and lasting results twice with prednisone. Each time, I am sure the infection was cleared, and we knew we were dealing only with strep... Definitely let Dr. B know what is going on. Good Luck.

Thanks for the article, Vicki, I can't wait for the paper to come out. So, I'm wondering if maybe this could be considered a replication of results from the Columbia study that came out in August ,09? I guess we won't know really until it is released, but it sure would be great to have another confirmation.

I believe that it is a real and logical fear too...I just think they played it up as if it was a fact, when honestly, we don't really know. To have Dr. N state that it can be permanent...is playing that off to be a fact. Anecdotally, the children who do get treatment (even ones who were sicker for longer than Sammy and your son) have made full recoveries...the long-term studies are just not there to tell us either way.

I've never even thought about the flu shots for myself and my husband. My one son has had his last week at a well visit, and my other 3 are getting theirs next week. I guess this is something I should discuss with my husband. He got the flu pretty bad last Oct, and a couple of weeks later was dealing with panic attacks for several weeks. So, I'm guessing that the flu shot would be good for him too.

I don't think anyone really knows. I've heard conflicting things. In April, when I took my daughters to the ENT to start the process of tonsil removal, I was telling the doctor that my PANDAS daughter had a mild exacerbation 2 months prior when her sister and brothers were positive for strep...she had no evidence of a strep infection. His response was that the throat culture is only looking for strep A and that there is other strains of strep that may have played a factor. I don't think that is what happened in our case, I think that having 3 kids in the house with strep was just too much for her immune system, and it went to her brain again.

Yes, there were a lot of symptoms and details that were not in the book. I remember one, Sammy had said the reason he didn't want to sleep in his bed was because of the comforter...but he didn't/couldn't (I can't remember which one) tell him mom. Also, there was a lot of indication that if not caught early enough, it would become permanent. Of course the show played it off as if Sammy got treatment just in time...I imagine a lot of PANDAS parents got really scared at that. Overall, though, I was happy with the show.

I hate that I am always worrying about when it will return... I hate that I am always looking/evaluating my daughter for a symptom... I hate that I am left feeling unsure and inadequate to help my child... I hate that I am reserved around friends and family because I am soooo obsessed that it takes concentration to NOT talk about IT...

Thank you for sharing this! I am so happy you are felling better! I wish you the best of luck!!

I wonder if the adjuvants found in the vaccines are suppressing the immune system? Isn't that what they are supposed to do? Suppress the immune system, so that the small amounts of attenuated viruses actually gets an immune response?--although for some reason this doesn't seem logical...no medical background here...just blowing hot air!

Obviously, this is so subjective and every family has to make the decision that is best for them. I have decided to get my kids the flu shot this year. Not the flu mist. One of the things that I have considered is the idea that the antibody load from a vaccine will be less than the antibody load from the actual flu.

That is what I believe is happening in my daughter's case. Although, we have had colds in the house, and for about a week, there has been a little bit of OCD...not yet to be disruptive to her life. We are trying Motrin for a few days.

So then, her IgA, IgG, IgM and other titers (ones she was vaccinated for) were all okay?

My daughter looked autistic when in her PANDAS episode. No social interaction, no speaking, vacant stares, defensive posture, startled at soft sounds. She went from, a completely independant 6 yr old to a child that I had to do everything for...

I really like your line of thinking. I know some of the PANDAS studies list the many symptoms and what percentage of kids in the study had them...so I wonder if some of the knowledgeable Lyme parents could post links to Lyme studies that have similar listings...perhaps that can give more insight into what you are asking.

I think this is where I'd have to absolutely defer to a lyme doctor to give you that answer. It is frustrating, but infectious disease illness is a unique experience for each person. How long one person may tolerate steroids would be quite different from another. I keep saying this, but soooooooooo many individual factors come in to play. Sorry I can't be more helpful. Mary Then, I guess I'm not about to get that answered anytime soon. Thanks for your reply

Karen, Not sure if you got a chance to read this thread on lyme and steroids: http://www.latitudes.org/forums/index.php?showtopic=10368 The idea is that yes, some lyme positive people can see some immediate improvement with steroids -- because it is likely addressing inflammation that is present. (and some lyme people who take steroids with see no benefit, or will see terrible reaction... just so individual). HOWEVER, in the long run steroids are most definitely harmful in that they supress the immune system and allow any pathogen to get the upper hand, so to speak. hope that helps Mary Yes, I did read that thread. What I am trying to clarify is if someone has good/great and lasting results with steroids...can that be an indicator that lyme is not the issue?

I am talking about IgA, IgG, IgM, Titers in response to previous vaccines...you know the stuff that the docs are using to get IVIG covered by insurance. Truthfully, I wasn't even considering strep titers...they have been so far removed from my thinking about PANDAS...because they don't tell a doctor anything more than that you had a previous infection. I have had it in my mind that strep titers have been an assumption of the medical community, and that they really have not been studied comprehensively enough to say if a titer rise post infection is normal or not...please someone correct me if I am wrong. However, if you want to add in strep titer information, that is okay. I'll edit my original post to include our info on strep titers.

Okay, so you do consider a response to steroids, when looking at the big picture? Obviously, that is going to be case by case.

I am speechless...I can't believe anybody could be so rude So sorry...((hugs))

The recent Lyme thread here on the PANDAS board, has been circulating around in my mind. I am curious about the immunological results that parents have gotten on their PANDAS kids. If my memory is correct, the parents on the PANDAS board who are pretty sure their children actually have PANDAS, and not Lyme...most of them have reported normal immunological workups (IgA, IgG, IgM, titers in response to previous vaccines...you know the stuff that the docs are using to get IVIG covered by insurance) However, those whose children who have had abnormal workups...seem to be more Lyme cases. I keep reading on the forums that Lyme screws up your immune system so much that it is hard to eradicate bacterial infections...I'm not disputing this. What I am trying to get at is perhaps a possible difference between Lyme and PANDAS. So could those of you who have had immunological workups chime in and tell us if your child has had normal or abnormal immunological workups, and how confident (perhaps a subjective %) you are that your child is only dealing with PANDAS, dealing with PANDAS/PITANDS, only dealing with PITANDS, only dealing with Lyme, or may be dealing with any combination. So, I'll start. My PANDAS daughter's immune workup was normal. I am 100% sure that right now we are only dealing with PANDAS. Also, when this all began, we did have elevated strep titers.

http://www.latitudes.org/forums/index.php?showtopic=10452&st=0 I am a little confused...Can you please be a little more specific about the indication of response to steroids and Lyme? In the thread that I posted above, I was told that you cannot really make any assumptions about positive results from steroids and lyme, and yet here you are saying that "declining results due to steroid burst" is an indicator of Lyme. So, I just need to understand this...if you have good results from steroids, you still can't rule out lyme, but if you have a negative response to steroids...then it is a lyme indicator? Please don't read this post as confrontational...it is written in the spirit of just wanting clarification. Thank you.

I don't know a whole lot about it. But what I do know is that in Dr. L's interview with Autism One, she was asked if plasmapheresis followed by IVIG would be the ideal treatment. Her response was that she didn't know because it hasn't been studied. From that, my assumption is that the studies done by Swedo using plasmapheresis didn't include donor antibodies---but that was just my assumption...perhaps someone can clarify that. Here is a link to the interview: http://www.voiceamerica.com/voiceamerica/vepisode.aspx?aid=44414

This is incredible...when did she tell you this? I Love that school!

DCMom, you are right...we need to keep trying to determine what are the differences between Lyme and PANDAS...not to divide and segregate, but to have a better road map for us when treating our kids. To read all the Lyme statements made...Lyme and PANDAS symptoms are identical. There really has not been a lot offered up to try to help us parents distinguish the two, other than a "clinical diagnosis." Which, I feel pretty confident that if I looked hard enough, I would find an LLMD to treat my daughter. Perhaps we should start polling or something. Although, just to clarify--it is just strep in my daughter's case.

This is the first I have heard this. I thought that prednisone was bad for Lyme? I was specifically talking about PhillyPA's son's case...not all lyme cases in general, and I said it "points more to PANDAS" not that it is a definite distinction between PANDAS and Lyme.