norcalmom

I don't know how old your son is or how much he weighs, but mine is 95lbs, 11 years, and gets 250 mg of azith for maintainence. 500 if things flare. Sounds like your doctor jumped all over it. Hope it resolves quickly

Yes - we have canary effect with all kinds of illness. Maybe it isn't a true canary, but when another household memeber is sick, ds will react. Sometimes it is just a couple days, and it will go away and he won't come down with he virus, but sometimes it seems his body will be fighting of the virus for a couple weeks (showing pandas symtoms when I am sick for example) and then when he actually gets the virus, his pandas will start to turn around- just when his cough is at its worst. It sin't a full blown exacerbation, but it is still an obvious increase. I guess ds has PITAND. Theroy is that the immune system isn't all that great at sending out only antibodies for specific antigens - so when the body is fighting a virus, antibodies for everything are produced (even the ones for strep).

WOW! Thats fabulous. Thank you for sharing this story. What a long road you've been on. GOOD JOB MOM! Wishing her/you continued healing!

I'm pretty sure I saw a thread? on uveitis - inflamation of the eye - and its causes, and it can be caused by strep (among alot of other things). Google it and search the board for uveitis - can't remember exactly how long ago I saw it - maybe a month. You can get strep infections on skin, and lots of other places besides the throat.

Cool! I just saw the wart posting - apparently good for that too!

In a way we were lucky my son had such a bad tic. It was so in your face - everyone could see it. It was disturbing to watch. But, overall, it was not the worst thing we had to deal with. The compulsions, obsessions, fears, anxiety, irritablity, lack of sleep...all the things that only we see, were far worse than the tic. With the tic everyone could see something was very wrong, my son was fine one day and a twiching mess a few weeks later. It was a visitble sign of the illness. People were scared it could happen to their child. So when I explained it was reaction to strep, and that there were other things too - OCD, bedwetting, separation anxiety...and to be aware that if their kid started to act odd, they should check for strep (becuase sometimes there are no symptoms to strep - whic was our case). Yes...I used fear to convince them that pandas exists. The tic helped.

I agree with all this...but I think the oil of oregano was for treating a wart!

I have some words that the forum will #### sign out for her! So sorry you have to deal with the stress that comes with this drama. It could also be that your mom and aunt have something going between them, and your aunt is using you and your child to hurt your mom. Family dynamics are soo difficult. I hope you work it out, but I'd cut her off for a while. Who needs that kind of judgment, drama and stress certainly not anyone with a pandas kid.

Since your phychiatrist wants to wait and see anyway, I would just tell her that you are going to pursue getting dd's immune system heathy, and tests for phycical illnesses (like viral encephalitis) before starting more traditional therapies, and that you would like to use her once your daughter is physically in a place where the strep related illness isn't overwhelming her. I would NOT wait to seek diagnosis and treatment. You should absolutely get the Cunninghams' test,and strep tests/tiers done. Don't even need to tell your phychiatrist (although, the fact that she seems threatened by another doctors would worry me...especially since the other doc isn't a phychiatrist, but a medical doctor who is an expert in an infectious disease.) If she had a minor tic, I would say wait and see is fine approach, but hallucinations can be sign of encephalitis. We only had ONE hallucination and that was when my ds's pandas was at its worst. Check out the reference to mycoplasma pnemonia in this study of encephaly: Abstract The California Encephalitis Project (CEP), established in 1998 to explore encephalitic etiologies, has identified patients with N-methyl-D-aspartate receptor (NMDAR) antibodies, the likely etiology of their encephalitis. This study compares the presentation of such patients to those with viral encephalitis, so that infectious disease clinicians may identify individuals with this treatable disorder. Patients were physician-referred, and standardized forms were used to gather demographic, clinical, and laboratory data. Features of anti-NMDAR+ patients were compared with the viral encephalitides of enteroviral (EV), rabies, and herpes simplex-1 (HSV-1) origins. Sixteen cases with confirmed viral etiologies were all negative on NMDAR antibody testing. Ten anti-NMDAR+ patients were profiled with a median age of 18.5 years (range 11–31 years). None were Caucasian. They had a characteristic progression with prominent psychiatric symptoms, autonomic instability, significant neurologic abnormalities, and seizures. Two had a teratoma, and, of the remaining eight, four had serologic evidence of acute Mycoplasma infection. The clinical and imaging features of anti-NMDAR+ patients served to differentiate this autoimmune disorder from HSV-1, EV, and rabies. Unlike classic paraneoplastic encephalitis, anti-NMDAR encephalitis affects younger patients and is often treatable. The association of NMDAR antibodies in patients with possible Mycoplasma pneumoniae infection warrants further study. Also - the flow chart that buster posted under "helpful threads for pandas" is somehting I shared with my immunoligist - who thought it was a completely reasonable approach. (course if I had access to a pandas specialist locally - I would just go there !)

Does anyone have a link to a description of the study?

If you suspect pandas you might want to spend some time on http://www.pandasnetwork.org/index.html Also at the top of the the PANDAS/PITAND page is a section called "helpful thread for pandas" there is a link to a page that has a diagnosis flow chart. Lot of other info too. That is the path most of us have taken to get here..not that we had that flow shart to follow, that would have made my life much easier if I had that a year ago! If you live near a pandas expert - found in Chicago, Maryland (and I think Boston and NY?) and there maybe one in Texas, I would go there if what I uncovered on pandasnetwork rang a bell. It is very difficult to diagnose. My son did not have "sudden onset" it was more gradual, over a couple months. And I think he had "phases" he went through when he was younger that could have been pandas since he wa around 6, but the behaviors were subclinical - odd - but could be considered normal for his age. Until a year ago. Also, trying to prove you had strep - can be impossible. Some have throat culture positive, some have high titers (the test given to sammy), some have nothing to prove it - but that doesn't mean there wasn't one. Pandas shows up weeks after the strep (the first time(s)) .Then it seems many will react to people around them with strep or other illnesses as their faulty immune system trys to react. Good luck and please don't hesitate to post your questions along the way. We're all here to help one another .

What does he mean "It dosen't mean anything"?!? Time for a new doctor? Although my pediatrician is not very helpful, she is at least humble (and smart) enough to know that she doesn't know everything. She's not going to become a pandas expert, but she isn't trying to undermine my efforts to seek out those that know more than she does on the subject. I can't see how anyone can read the cunningham paper comparing blood samples from known SC patients, pandas and "normal" sera and say it doen't mean anything. I mean, how do you argue with concrete numbers measuring specific reactions? Not only do you need a more supoortive pediatician...maybe a more intelligent one too? I think some people just want rules to be set for them, top down. They can't accept anything coming from a patient (bottom up) or researchers (sideways). I would love to be able to invest in cunningham's test. I think it will become a basic test that kids will get in the future for diagnosing ADD, tourettes, ocd, pandas, sc... Good luck with whatever you decide. I understand that you may have many years invested with thie ped, and he/she is convenient and the million other resaons to stay with him. I wouldn't have the energy to try to change someone's mind that is THAT thick headed - but good on you for trying!

from what I am learning here, and from another email I had with diana P., sounds like pex gives immediate releif, but some beleive without ivig doesn't have the "healing effect" on the immune system. It removes the offending antibodies immediately, but doesn't replace them with anything. This is all theoreticall and antecdotal. wish there were some longer terms studies that tracked how ivig and pex compares. And - yes - true plasma exchange(which no one does) - sounds like the best way to go. So plasmapheris followed by IVIG next best thing. Get the bad stuff out, get some normal immunoglobulin there to regulate things. Sounds like it is all moot since no one even doing pex at the moment. (Dr Latimer only one I saw cited as using it).

I've never realized this is (could be) ocd. NOW I get it. My son does this all the time. Esspecailly about wanting stuff. He will try to get me to commit to stuff, even if it is a year in the future. Stuff he knows he will never get. He harasses me over, and over. We call it badgering. When he starts I give him a bit to see how far he will take it, "I've answered you ten differnt ways, now you are badgering me. Let if go or I will have to stop playing and go inside" (becasue - I can't stand it anymore and I'm going to loooose it!) I don't say that part...ok.... sometimes I do. I've just considered him an excellent and persistent negotiator. But it goes way beyond that - I can see now how it relates to ocd. Soemtimes he can't let other things go either - if he feels wronged in some way, like somethings unfair - he has a very difficult time moving on - he obsesses over it. I think it falls into the category of being inflexible. He's stuck on something - like classic ocd - only he's stuck on something he wants, or somehting that happened that he didn't want. Control-issue ocd. He doesn't repeat the EXACT same thing over and over (he will approach it from every angle he can think of), but he is stuck none the same. He has another weird one that we didn't know was ocd either - he can't stand to hear or see me or his father swallow anything. He is very controlling about it. Basicaly, we aren't allowed to swallow in his presence, or he losses it and will rant and rave for 5-15 minutes. This was his first big symptom in hindsight. We jus thought he was starting to be a preteen pain int he you know what at dinner time - he and sister would get comptitive about who had best table manners "don't talk with your mouthfull - you are soooo disgusting" thats how it started. Then when other symtoms started we thought he was jsut sensitive to noises, maybe sensory intergration disorder, because he was a bit more sensitive to everything(extremely irritible) - but the swallowing thing took on a life of its own.

Aetna (our provider) considers it experimental for pandas. Ironically, they have a page explaining what pandas is, and on that page they say that IVIG and plasmapherisis are used as treatment for some pandas cases. http://aetna-health.healthline.com/smartso...finition/za1192

I know you aren't suppossed to do a steroid burst before a CamK test ...and I'm assuming some of the other immuno tests as well. I don't know time frame that steroids can effect test results. Might want to include this information since most pandas parents are seeing so many diff. docs that it is easy to get your steroids and do a burst through your phychiatrist, and a month later have an immunologist draw blood for something.

I'm wondering the same thing. I think we may be doing IVIG, and want to try to do it before school starts up (to avoid all the germs) but we also have a vaation house we've rented, and a 2-week camp scheduled (a very expensive camp that he's begged to go to for the past 3 years)...I am sure some thing will have to go.

LLM - Thank you for taking the time to answer all my questions it was very helpful .I hope your son is responding well to the recent IVIG - I just read your post on it. Please keep us updated.

bmom, how did the steroid burst go? any signs of change in tics yet?

And why doesn't anyone prescribe pex anymore?

Wait...you had one son that did one round of IVIG and another one that did PEX? And now you can't get anymore pex so you are trying to get two more rounds of IVIG? How old are/were they? Thanks!

Has anyone researched the risk / benefits of PEX vs IVIG? I recently saw a post that said Swedo considers PEX to be a superior treatment. Does anyone know if there was a study that shows this? I am wondering if PEX has more risks thatn IVIG? More cost? Seems that most opt for IVIG. For those of you that went the PEX route - how did you decide? AND is it really pex we are talking about or plasmapherisis? Seems the terms are interchanged, but I find different defintitions for these two terms. Thanks!

I'm glad you went. The good news is, even if it is strep, his pandas behaviors are improving. I don't know if you can get the rash with out the actual infection, but it seems possible, seems like the rash is an immune response - like when you have an allergy. I know my son gets pandas symtoms when others around him are sick...so why not a rash? keep us posted on the strep test results.

Thank you for posting this. We use Azith. We sometimes use advil - usually only one per day when things are flairing. I don't like meds much, too afraid of stuff like this.

Hi, you just replied to my other post.."OMG you just described ds10!". The reason I want your son to SEE the doc (you're right, if you make a phone call, they hear rash, they will want to change antibiotics in case of allergy) is becasue I DIDN'T . Remeber the part of the story where my son had what appeared to be what I now know is a perianal rash - and I thought nothing of it, put some antibiotic ointment on it and waited to see if it would go away(it did) - I didn't go to the doc. Maybe if I had they would have identified it right away and we never would be on htis forum. It will be OK. Its probably nothing, but you shold check just in case...so you can sleep tonight. NCM