thereishope

When's the cut off for submitting something for March? If we don't have time to create our own pictue, what do you think about the pic on the PANDAS Network website? It's simple, but it's at least a picture and it ties things together. Otherwise, what do you guys think should be incorporated into a logo/pic? Also, where ever we decide to refer to PANDAS in the title, type it out P.A.N.D.A.S.

That's actually a really good point! Hmmm...looks like it's a brainstorming afternoon.

For the person or organization, I would put the word PANDAS research in there first as the lead. It's long, but you may be able to abbreviate Univ of OK. When you make a personal donation, you need to put that on the check. So I would do that for this too. MAke sure the money will go to PANDAS. As for the image, I don't know what to put because of copyright laws. I think I still have that old image of the sad panda bear saved that the NIMH used to have on their site. Otherwise, you can contact Dr Cunningham and ask her if you can use the logo for the University of OK? I think it would be nice to contact her and let her know we, as parents, are at least trying to help and get her "blessing".

From what I have read, Azith does clear most people of Mycroplasma P. Also, some people can actually clear themselves of it over time w/o abx. It is also known as walking pneumonia and community pneumonia. Walking pneumonia because a good portion of people don't even know they have it. Community pneumonia because it is contagious and people who are clustered together (say in a classroom) can spread it to each other. I believe this is how my non-PANDAS so caught it. That rough, unproductive cough was rampant in the school at the time. The thing is a lot of people dismiss the cough as a symptom of a cold or allergies and don't go to the dr. As for whether other family members should be tested I don't know. If you're going through IVIG treatments and such, I would think that it doesn't hurt for you, the parent, to get tested, but really don't know. What kind of "scared" me about it is that it is described as "smoldering". A person can have contracted it for 20 days and just be showing symptoms. As for why PANDAS kids may be non-symptomatic with it...well, compare it to PANDAS kids and strep. A very high number do not get symptoms. Most "non PANDAS people" get over strep w/ amoxicillan. Not the case for PANDAS. So, for Mycroplasma P, most people get over it w/ Zith. Maybe it's not the case w/ PANDAS kids. Or docs don't know how long the infection has been either and perhaps Biaxin is much stronger than Zith. So... Amox is to Zith/Augmentin for PANDAS as Zith is to Biaxin for Mycroplasma P? Anyone know if this is the case? Also, w/ PANDAS kids, a very high number are non-symptomatic w/ strep. Other parents will tell stories, how their child has allergies w/o physical symptoms or other illness w /o textbook symptoms. So, I don't see why we should necessarily be surprised if it's the case w/ Mycroplasma P as well. As for PANDAS symptoms, well, if Mycroplasma P is the original trigger, I would think the child is more PITANDS. If the child's original trigger was strep and now reacts to Mycroplasma as well...well most kids do react to other things like viruses, infections, etc...so I don't think I would be surprised if Mycroplasma P would be a trigger too. Bat Sheva Myllys has been dealing with Mycroplasma P and her daughter for awhile. She's busy and doesn't check the forum often. I'll pm her and ask her to join in on this if she has the time. Maybe she can share what she has learned.

I can post a couple of threads of people who are doing well for many years. I just can't bring myself to use the word "cured". I think these kids can be "cured" of each exacerbation (meaning they go back to their normal), but the overall autoimmune disorder goes more into a remission and may stay latent in the body. Meaning,the possibility (even if it becomes very minute) still lingers somewhere if the right equation of circumstances happens again. So, sorry for the clause that it kind of a downer, but here's some threads I saved of some people who have done well for years... http://www.latitudes.org/forums/index.php?...15&hl=swedo http://www.latitudes.org/forums/index.php?...37281entry37281

I found the thread. It said exactly what Gat's Mom said...if there's no breech nothing will happen. if there is, the person will be calm and relaxed from it. It was given under the guidance of a chiropractor.

I think I only remember one person ever mentioning GABA on here and I believe they used it as a test to see if there wa a breech in the BBB.. Something about the way the child reacts to it helps determine if there's a breech. Did a chiropractor suggest it? I can be way off. I'll try to find wher I read that.

I just googled it and Biaxin is listed as one of the abx that is used to erradicate Mycroplasma P. As for PANDAS symptoms, I would think if the infection is erradictaed and the antibodies lower, the symptoms would improve.

Melanie, in Dr T's original post about Mycroplasma, he did state that IVIG would help erradicate it as well. So, since your son had IVIG, that should help too.

This is just my opinion...I would think, like strep, it could be erradicated. Just for some people it may be more difficult, like strep is for some PANDAS kids. My non PANDAS son was dx with it and he only got a 5 day script of Zithromax. So, I guess for most people it is easily erradicated? He did have a cough. But PANDAS kids are different.I remember reading in one of threads that either strep or the Mycroplasma P is more difficult to erradicate when both infections are present? Does anyone else remember reading something like that? Something I'd like to know is whether other family members should be tested like we all do when a PANDAS child has strep. Mycroplasma Pneumonia is contagious. Also, if the theory is that these kids did have the symptoms at one time and went undiagnosed then morphed into non-symptomatic or whether the child was always non-symptomatic (like some PANDAS kids are w/ strep). I guess that would be hard to know. I would think every child had a bad cough at some point or another in the scheme of their life.

I would think you need to say where the charity money would go to. The only PANDAS research studies that I can think of that are currently underway are Geller's DNA study, Murphy's study, and Dr Cunningham. The first two, I assume, have grants. I would vote for Dr Cunningham.

My son was only 5 years old and in only 2 day a week preschool, so I didn't really have to deal with the possibility of pulling him out of school. He did miss some because of PANDAS, but becasue it was such a short week and only preschool, it wasn't a big deal. Are you sure you can trust him and the school to get meds 4 times a day?

Sometimes doctors are no longer accepting new patients, but will "over ride" it depending on the situation. That has happened for us before.

I bet mine is slower than yours! That's why I didn't really look through the website too much. But, I am excited to say my husband promised me a new, much faster computer when we get our tax refund! I am so excited!

I just want to clarify that we are all talking about Mycroplasma Pneumonia? I think someone said the word "Mycroplasma" by itself is something different? If it's Mycroplasma Pneumonia, I think a child can have it and it's never caught. When a child does exhibit symptoms, it's a cough, sometimes accompanied by a fever. Technically, I think a person can eventually rid themself of Mycroplasma Pneumonia even if they do not go on abx, but I guess that's that is not always the case. As we see with PANDAS and strep, these kids do not fit the norm when it comes to bacteria and symptoms so I don't think we should be surprised if they can be non-symptomatic with Myco P or if their bodies somehow adjust to it and they stop showing symptoms. Even if the person is symptomatic, the cough often associated with it may not even appear for 20 days afte being infected.

Here' s the website. http://www.refresheverything.com/ Did you submit something already? If not, what do you want to submit...Dr Cunningham's research?

Was he ever on Azith AND Augmentin at the same time?

So, those who have not had success with abx like Augmentin, but go onto to have success with Zith....do you think a good number of them also had mycroplasma in addition to their strep and that is the main reason why the Augmentin did not work as oppose to so many cases of intracellular strep?

I'm glad you got there safely. Do they allow you to bring anything like a portable dvd player? That would help pass the time. Did you just get there this morning and avoid the earthquake? I wish you and our family luck and I hope you find all answers you need.

Welcome. Here are some very useful links to read that may answer some questions along the way... PANDAS Fact sheet http://www.latitudes.org/forums/index.php?showtopic=6265 PANDAS FAQ http://www.latitudes.org/forums/index.php?showtopic=6266 Amoxicillan Failure rate in strep http://www.entrepreneur.com/tradejournals/.../169459644.html Great website to refer your doctor to www.pandasnetwork.org I know it seems like a lot to read, but just print them off and read when you get a chance. There really is a lot fo info for you to learn from.

My son had t and a in Feb 2009. He was 100% recovered at the time from his last PANDAS exacerbation. A month later he had strep and another exacerbation surfaced. Something to add is, at that time, all 3 of my kids had strep, so the odds were really against him. But, knock on wood, he has not had strep since that last infection is Mar 2009. I have the mind set that I know it will not fully protect him from getting strep, but I also don't know how many times it has/will prevent him from contracting it. As an adult who still has issues with her tonsils, I wish I had them out as a child. Now that I am an adult, I won't do it to myself. I have heard recovery can be hard for an adult and like alderliefest, I just can't chance having a hard recovery.

Here's some Mycroplasma Pneumonia threads that you may be interested in skimming through again... http://www.latitudes.org/forums/index.php?...0677entry50677a http://www.latitudes.org/forums/index.php?...51749entry51749

That sounds like a busy schedule! In my opinion, I would base whether or not he's ready for school on the "clinical" picture. If he wants to go and he seems to be improving, I would send him. Would he tell you if he feels overwhelmed? It could be that he's being exposed to other people being ill or the stress is causing setbacks.If you have good communication with him, ask him to let you know if he feels like he needs a break. Is he on any meds/antibiotics?

As for why things aren't improving, it could be the antibiotic. Unfortunately, not many PANDAS kids get better on amox. If it is day 5 on amox and no improvement is occurring, I say call your doctor and tell them the kids are not getting better and you would like a different script It seems like the majoirty of kdis improve on Augmentin or Zithromax. Here is an article that is often posted about teh failure rate of amox and strep http://www.entrepreneur.com/tradejournals/.../169459644.html

I was told that if I want a 504 plan or an IEP for PANDAS, I need a doctor to write out and supply a statement diagnosing him. My son has an IEP in place for speech services through the school district. PANDAS is located in his health history section. For that, they take the parent's word. But having it solely in health history does not give him the "protection". However, it does have some weight in that it is in writing at the school and opens up conversations. I personally have had a 2 hour converstaiuion with his teacher prior to the year starting. Notified my other son's teacher of our situation and have an understanding with the school to call if strep enters either classroom. Has your child had an immunological workup? Could you get that done? Has your child got the dx of OCD or TS? Sometimes you have to work the system and go with a different dx until the whole PANDAS thing is resolved. Soemtiems it doesn't matter how you get the school to ackowledge your child needs help, just as long as they get it. There's such silly rules out tehre that everyone needs to follow. It has a lot of loop holes that lets the parent done too. I'm not saying to lie, but work with what they have. Maybe try to get a different dx to help your child. At least for the school. I'm definitely not saying to comes to grips, personally, with a dif dx, but for for school purposes only and only for the time being.