P_Mom

PacificMama, Your number 2 floored me! How often are you on the PANDAS forum posting about LYME!!?? And number 4..... Dr. T has been treating PANDAS patients for well over 10 years....nothing recent about him. Number 5.....I can't imagine you ever referring someone to a PANDAS specialist because they can never seem to have PANDAS, just Lyme.

Chemar, I agree. That is why in my post I specifically mentioned that night sweats are "ALSO" a symptom of PANDAS.......I didn't say "only" PANDAS.

PM, I am sorry to say that not everything is understood about PANDAS. I think it is common knowledge that PANDAS is in the research phase, so, not all experiences we PANDAS parents have are going to be backed up by the scientific literature you seem to require. This is a forum where we parents come on and share our experiences, knowledge, opinions, etc. In no way should one feel that every post needs to be backed up with a website, medical literature, expert opinion, etc. like you mentioned in a previous post. I know you are very careful to do that, but, in no way is it required of ANYONE who posts on this forum...that is not what this forum is about...perhaps you are , but, not the majority of us here. Night sweats are a common symptom of PANDAS kids! Period. You are going to have to wait for the scientific literature you seek about it. Not everything is caused by Lyme, sorry to say......and not every symptom a child has is LYME!! My goodness.....every symptom someone puts on here about their PANDAS kid is countered by..."hey, that is a symptom of Lyme!" What I would like to know....what ISN't a symptom of Lyme???? Seriously. We don't know everything...including you...neither does the medical community...especially when it comes to PANDAS. Perhaps it is something you can search all over the place to try to find the reason for ..but, it is not there, YET! By no means does it indicate that it does not exist or is not true...just because you can't find info. to support it!! Again, as a PANDAS parent who knows of several PANDAS kids with night sweats (who do NOT have Lyme)......night sweats are ALSO a symptom of PANDAS! Why can't that just be accepted????? Do you think we are making it up?? Or, more likely, you think our kids really have Lyme, right? Oh, and yes....Dr. Kovacevic has told me night sweats are a common finding in PANDAS kids.....ask him why if you really want to know. But, I don't think he can explain the mechanism behind it just yet. And why do you have to counter EVERYTHING I post???? It is quite obvious.

Both mine are....my youngest is off the charts....and, he was the most affected by PANDAS.

Thanks DCMom! Very cautious about her words in an understatement! I tried to pry info. out of her when I was down there left and right.....she was EXTREMELY cautious about what she claimed.......I could tell there were some things that would be coming out soon...she was holding back, she wasn't ready to release it yet. BUT, she was very clear and vocal about band 41. Even saying she was going to the Lyme Conference "armed with her research." God Bless her! JT's Mom, What is new about what Dr. Cunningham is proposing is that Band 41 is found in normal, healthy mouths! The old literature mentions that it comes from an infection.....this leads to confusion when you come up band 41 positive only and never had any kind of oral infection...then you think...well, how could it be from that when I never had an infection...or Syphillis...must be related to Lyme. But, NOW it is being found that it is a normal, benign finding in MANY (almost half, like I said) people with completely healthy mouths and bodies...... just part of normal flora. That can change some ways of thinking...atleast, it should.

Thanks for finding that JT's mom...saved me some searching!!! So, Lyme is now in Mosquitos?? I know some have proposed it, but, have the spiorchetes ever been cultured out of one???

Yes, EA Mom...there are many false positives as well as negatives. The Elisa and the IGM western blot produce many false positives. I have read the PCR test is also not a very good test....it is very insensitive and easily contaminated.

Nickelmama, Yes, night sweats are PANDAS related....many PANDAS kids experience this....mine is one of them.

Understood. This LLMD is reviewing scientific literature, but, there is a researcher saying that band 41 is of no significance who writes scientific literature. She hasn't done it, yet, but I know Dr. Cunningham will soon be publishing some information on her studies...one is on band 41. You put a lot of faith in Dr. Cunningham's CamK studies and how it can relate to Lyme...even urging people to contact her when their PANDAS children turn up Lyme. You must have some confidence in her? I don't think she is pulling "opinion" out of thin air. She has specifically stated, and presented at the recent Lyme conference, that Band 41 is caused by normal oral flora in the soooo very many "only band 41" positive results, also finding that band 41 is extremely common in the non-lyme population because of the reason I stated above. Perhaps the scientific literature will soon be changing!! Do you still have confidence in her? We could go on about this doc said this...or that doc said that....who is right??? The LLMD's are always right it seems. So, is Cunningham only respected when she agress with the LLMD's? She has no concern of Lyme if band 41 is the only band present. p.s. The "practicing neurologist" you mention didn't just decide to specialize PANDAS recently. There is a 21 year old girl who has posted on the PANDAS forum whom he treated when she was a child. She credits much of her well-being to him.

Whan I find the site I found that statistic on...I surely will! But, what is the point?? It seems that something can only be true if a LLMD says it is! I don't feel what that LLMD has to say is any more valid or reliable than what Dr. T and Cunningham have to say about it.

Chemar..........agree!!! THANKS!! It can get so incredibly exhausting!!

Josey1, Great post! Band 41 is not at all Lyme specific and shows up in almost half of the "normal" population. As you mentioned, Cunningham says it is caused by normal oral flora....you don't have to have any kind of gum disease...it just normally exists. Even MANY LLMD's say band 41 is of no significance.

Here is a reason I found for eccessive thirst......... •A psychological disorder. Psychogenic polydipsia is excessive thirst due to a condition like schizophrenia or obsessive compulsive disorder."

YES!! My son drank milk constantly during his episode!!

Yeah, I really wish there were a way to vote twice!! I had the same problem, but, I voted based on my older son who had a very quick diagnosis (5 days from onset to treatment.....95% reduction of symptoms in 24 hrs. of antibiotics....currently complete remission) My younger son presented first so it took a bit longer for treatment and diagnosis, but, still fairly quickly in the big scheme of things. Took him a bit longer to come around, and, currently, almost complete remission...not 100%. (I'd say 95%)

It is interesting so far, the children who are currently in complete remission from antibiotics alone were treated within 2 months of onset (Vickie, Myself and Kayanne) (You can view who voted next to the question...just hit view) So far, this is supporting what I believe to be crucial....treat symptoms immediately. When your child suddenly starts ticcing, or shows any new strange behavior.....give a good 3 week course of full strength antibiotics! It could really make a difference for the childs future, and, how could it hurt? Now if the medical community would just come on board and treat sudden onset tics, ocd, etc. with antibiotics REGARDLRESS of any apparant infection....I wonder how many kids this could help...and such a simple thing. I would urge any new parents experiencing sudden onset of behavior/motor changes in their child to do everything they can to get their hands on a good course of antibiotics...ASAP! The time of treatment is corresponding with current symptom status in all areas so far, actually. The ones who marked 3 or more years are marked at 60-80% improved. Interesting. I find it peculiar that dr.K told us at our office visit that it doesn't matter how long the child has had PANDAS...the response will be the same to treatment. (assuming he meant IVIG, though) But, it seems it really does make a difference when concerning antibiotics. Not sure about IVIG...that would be a different poll.

My first vote was for my first child, older son. If I were to do it for my younger son...it would be..... within 6 months dramatic improvement over several weeks Almost complete remission.

I am just wondering if quick treatment impacts the course of PANDAS. Can it enable you to avoid IVIG and/or PEX? Can you successfully manage PANDAS with early antibiotic treatment? If the polls cpme back how I am thinking.....I would be a firm believer (well, already am) that any child presenting with a sudden behavior change (tics, ocd, anxiety, rage, etc) be given an agressive round of antibiotics immediately to see if symptoms improve. (even in the absense of ANY sign of infection)

Maybe that should be our next poll. Time of onset till time of treatment....and response.

Thanks all! My son had a rapid, 24 hr. response to Amox........ and it never returned near to the extent that it was on oset.

this is where I wish I had more medical background but I'll throw some stuff out there and maybe someone can comment on it. But I think that some antibiotics can help with autoimmune symtpoms even after the infection is gone because they are immune modulating. Not exactly sure what that means though I think I've heard it mentioned before. Maybe someone esle can comment on that. Momaine, Right! But I am talking about the kids who do well off antibiotics completely.

If your child does well off antibiotics......I would think that would mean there is no underlying infection.? Some kids need to stay on antibiotics to reduce symptoms....if they go off..symptoms come back. I would think that indicates an existing, persistent infection, or, someone in the house who is exposing . (Worried Dad's case????) For those who do well off of antibiotics, and use them strictly for prophylactic measures for strep (PANDAS).....wouldn't that be an indicator of no underlying infection???

Well said, Peg!!!!!!

Vickie! How very fortunate that he doesn't remember!! My older son doesn't have a clue, but, my younger son remembers it like it was yesterday! (and it was over 3 years ago!!) He will not even talk about it ....gets very upset if I bring it up, but, I, too, felt I needed to sit the boys down and make sure they knew about strep and their "feelings". He hated every second of every word I said....my older son went with the flow. I think it really pains him to go back to those memories. He knew he was "lost" when it was happening to him........he knew something was very wrong, even at 4 years old.....double

My younger son had definite autistic/asperger qualities during acute onset. (no eye contact, social withdrawl, lining and stacking things, etc) He was 2 months shy of 5 years old. My older son was 7 1/2 at onset and had none of these symptoms.