norcalmom

Great article!

my pandas/ mycoP kid gets that long term cough too. It dry, non productive - it seems like NOTHING, not even something you would take him to the doctor for because there is no fever, no malaise, just somewhat croupy cough that last a little longer than a usual cold. (3 weeks or so). He has igg of 2450 (normal is less than 100) and no IgM for mycoP. Blood was drawn when he was at his most healthy - completely asymptomatic, AND he had been on high dose azithro for about a year. Two doctors said it meant nothing, just that he had had it in the past, but the LLMD saw it in his record when I was getting him checked for Lyme. Said a titer that high means his body is conintuing (unsuccessfully) to fight it...the IgM only stays high for a short period. AND the IgG will also start falling, even if infection still present. Most cronic mycoP cases - they don't produce either. Dr. Nicholoson concurred, he is dealing with a chronic mycoP infection. So - PCR test is better. But, my understanding it still is not that accurate. If posititve - yes you are positive, but if negative - might want to retest again in future if you have any suspicions (or if someone else in you family is positive, as this is a communicable disease). I haven't done too much research on that, but in a couple (older) papers I read, that was the case. You might want to ask the lab % of false negatives - I'm sure they will have more up to date information. If anyone has anyone has seen any papers on mycoP titers, and what a normal curve is after exposure / infection with mycoP is, I'd be interested! I think the MycoP is supposed to fall back to normal range (but don't know how long that is supposed to take).

love him. went to him for same reason. we are in california. he's probably seen more pandas patients than all the other pandas docs put together, since he's be providing pandas care for over a decade. he's does ivig, but is fairly conservative with it -only one does of 1.5 usually...which I like. He believes that that will take care of at least 80-85% of kids, and the rest might need another does if they relapse. You should try to do as much bloodwork and infection investigation as you can through local doctors, as well as antibiotic treatments. he does not recommend long term high does antibitotics (but many of us have found we still need that after ivig - and get from local docs). you should email him. he will email you back. send him a page or so on you situation.

I strongly urge you to check all your kids for mycoplasma pneumoniae. The tests, unfortunately, are not very good, but there are three tests you could do - Mycoplasma IgG, IgM and PCR testing. The first two are standard tests. The last is a little specialized, but you could google it and find out more, or your doctor could find labs that do it and order it for you. ITs considered more accurate. I'd also ask for immune panel that includes strep penumoniae titers, IgG, Igm, IgA and IgG subclasses. Sounds like a lot - but it isn't. Your doc will probably add a bunch on to it if your child is there for a blood draw anyway. A croupy cough is a hallmark of mycoplasma. Mycoplasma has also been shown to produce "pandas" / pitand (they react to more than just strep. My child has had that cough (it isn't croup...we know that one...but sounds like it, and is non-productive, and lasts for a long time without any other symtoms like congestion, or fever) My child at age 10, presented with "sudden onset" pandas. BUT IN RETROSPECT he'd been having "phases" at least once per year - usually around NOW - since about age 6. He doesn't get strep, but we do think he had peri-anal strep that set of the "sudden onset" - which came on not overnight, but over a period of about 4-6 weeks from first noticing odd ..but "normal" behavior for a quirky 10 year old.. to violent tics, nightmares, decline is school, bedwetting, insominia...the tics is what sent us to the doctor. Since then we learned about mycoplasma, and we belive he has a chronic case of it. It is very difficult to get rid of. If your child/ren do test positive for mycoplasma, please post again or PM me. A short course of antibiotics will most likely not get rid of it. I wish I had known more when my son was your children's age - maybe we could have avoided the whole thing. My son also had pneumonia at age 6..coincidence?...I don't think so! Its a complication of mycoplasma pneumoniae (a different type of penumonia than classic pneumonia). I encourage you to rule it out! And yes - early on in the disease, the behavior happens first, and the tics come a few weeks after. AND they don't happen at the same time as the illness, but several weeks after. This is also classic for syndenham's chorea. By the third / fourth time, the symtoms will happen at the same time as the illness be it strep or virus, that is setting your child off.

Here's an old thread on same subject: http://www.latitudes.org/forums/index.php?showtopic=7894&st=0&p=64286&fromsearch=1entry64286

Phasmid -Thats great news!! so happy for you both. I wondering what antibiotics you are on post ivig? BTW - the I've been emailing with the immunologist that you recommended that is now at Stanford - he seems great - I'm going to be making an appointment. THE BEST PART - he has an office IN MY TOWN!!!!

my son actually LIKES the tablets called "yum-yum adolphilis" by Jarrow they come in a yellow ornagish box. We get ours at whole foods, but I've seen them at other places as well. Taste like candy. There are also little chocolate bars, by ATTUNE, here is a review of them. My kids fight over them. they have 6 billon active cultures. They are delicous, but pricey at about 1.50 per bar. If you buy by the box, like I do, they cost less. They are sold in refrigerator sections of many supermarkets and you could probably buy them on line. http://www.healthyfellow.com/556/attune-chocolate-bars-review/ DS USUALLY gets some kind of probiotic in his lunch - in the form of a yogurt or one of these bars. And usually the "yum-yum adophilis" or a pearl or other pill before bed. He has his antibitoic with breakfast and dinner.

Azith is used as well, and if it was a simple(not chronic) infection, would probably work. If you think mycop is source of neurophychiatric symptoms, it has gone beyond the typical infection. Do you know when he came Down with mycoplasma? Did he have respiratory symptoms, and a classic diagnosis- or is it something you uncovered because of pandas? If he didn't have it long, then azimuth might take care if it, but if chronic, as appears to be since you have taken at least 4 blood tests, I'm assuming over several months, is much more difficult to get rid of. I guess I can't get pms on my phone. Garth Nicholson is name of microbiologist that spoke at last years autismone conference, I got his name from dianna, who was there for pandas stuff but happen to hear him speak. His website has info , and he replied to my emails as well when I had several different opinions on my sons titers. Immed.org Sorry for typos-auto correct on my phone and tiny type to blame!

IgM show a current infection. That tiger will go down when infection has either cleared OR body has gotten used to chronic star of infection, and just stops making it. I don't think think these have moved enough to show any thing- beyond the fact that the antibodies will fluctuate a little day to day. IgG shows past infection, it can stay elevated for up to a year after infection gone, and it can ether kep climbing(like my sons which is 2450) in absence of IgM, or, like IgM the body just stops making it, but the infection can remain. You are lucky he is making these two titers. Mycop can be very difficult to get rid of. My son was on 500mg azith daily for 9 months..that was before we ven knew he had it! He has now switched to doxycycline, preferred antibiotic for mycop, and will stay on that at 200mg day (actually on doryx, a variation easier on stomach) for at lease 4 weeks, and then most likely will cycle to a different antibiotic. Pm me I can tell u more, but I am limited to my phone because I'm on "vacation" with my 2 kids until sunday

IgM show a current infection. That tiger will go down when infection has either cleared OR body has gotten used to chronic star of infection, and just stops making it. I don't think think these have moved enough to show any thing- beyond the fact that the antibodies will fluctuate a little day to day. IgG shows past infection, it can stay elevated for up to a year after infection gone, and it can ether kep climbing(like my sons which is 2450) in absence of IgM, or, like IgM the body just stops making it, but the infection can remain. You are lucky he is making these two titers. Mycop can be very difficult to get rid of. My son was on 500mg azith daily for 9 months..that was before we ven knew he had it! He has now switched to doxycycline, preferred antibiotic for mycop, and will stay on that at 200mg day (actually on doryx, a variation easier on stomach) for at lease 4 weeks, and then most likely will cycle to a different antibiotic. Pm me I can tell u more, but I am limited to my phone because I'm on "vacation" with my 2 kids until sunday

If u listen to Swedo interview last week on blogtalk radio, she mentions a study with 5 pitands kids. One was set off by varicella vaccine, one by actually chicken pox...ne was h1n1, one regular flu, can't rememerlast one, could have neem pneumonia. My child is pitand, and a cold could cause an exacerbation, I'm not really anxious to find out what a vaccine would do. Either way, big risk since I'm sure actual infection would be just as bad. Sigh...since he does not make pneumonia titers, and has probable chronic mycoplasma, we will not do the vaccine challenge test. Unfortuately, doest qualify for ivig through insurance since he didnt have pneumonia, more than 2 x per year, and I think the mycop is different type of pneumonia...not a typo u get covered in the immunizatios-although from my research it is a very very common contaminant found in vaccines. Another reason not to vaccinate. Listen to Swedo interview toward the end, that is where she mentions it. It might not help you with your doctor, but may she says something you could google to help build your case.

Thank you all! Seems to have stopped. ..Thank goodness.

Phas - your son had mycoplasma right? I have read that kids who react less and less to it..could be that there is less mycoP(or whatever) to die off in the first place. Anyone out there with known Lyme that had ivig and had ( or didn't have) vomiting?

Someone from Lyme board pointed out that my son's reaction after switching antibiotics might be a herx. First, I have to say, I'm not even sure if I BELEIVE in herxing. I thought, no, the side effects listed for the drug (doryx) say that vomiting/nausea is a side effect. But then, watching my son vomit, I had a flashback to 3 days post ivig. Violent vomiting - for 8-10 hours, almost every hour like clockwork. This morning he's now vomited 3 times in 4 hours. I don't think its the antibiotic causing nausea, which would happen within a couple hours of taking it. Its been 12 hours since his last dose, so it isn't in his stomach. AND he has been taking it for almost 3 days with NO nausea at all...so it just doesn't seem like it is that particular side effect from what I've read.And No, there is no chance it is the flu. The only thing he's doing is vomiting. He's fine for an hour, and then vomits, and fine for another hour til the bile builds up. No one else has flu either. The timing is almost exactly the same. He began vomiting approx77 hours after first does of ivig. He began vomiting approx 65 hours after his first does of the new antibiotic. My son has myco P - this much we know. MycoP will cause a herx, just like lyme die-off, from everything I've read in researching chronic mycoplasma. Dr K said that 10-20% of kids get this vomiting a couple days after ivig. I'm now thinking that that vomiting was a herx from the ivig... Maybe Dr. K's 10-20% have a type of infection who's die-off results in herx. The ivig was killing off mycoP (but not all the way!).. Anyone else out there have the post-ivig vomiting, and vomiting with antibiotics switch?

thanks for all the replies..here is an update, and a possible lightbulb moment. We switched antibiotics because we think he has mycoplasma. His IgG is off the charts for it. And, in order for it to be that high, either he would have it chorincally, or it would have had to break though the Azith he's been on for a year and a half. ..and without strong symtpoms. When I tested him for it, he was not symptomatic. Doxy is treatment of choice for Myco P. Azith is good too. He was on Azith for pandas, and did well initially to it, but I just don't think it does anything anymore, and the reason we did the mycoP tests and lyme tests, was I wanted to make sure if we changed off Azith we moved to something appropriate. Doryx is same as doxy ..and supposed to have less side effect and be much easier on stomach. i hope that isn't marketing since I paid over $400 for 30 days of pills, and insurance paid for part of that! NOW FOR MY AH-HA MOMENT Someone on the lyme board said this could be a herx...I thought, no, if yo look up the side effects it says vomiting is one of them, and its notoriously hard on the stomach from what I've read. Its not the flu,...BUT it is also weird that he has taken several doses and had no stomach issues with it thus far, that is doesn't seem like the side effect either. Its clearly not in his stomach anymore, and from what I read, THAT side effect is pretty immediate. Like some people just can't digest the stuff. AND THEN I had a flashback to exactly 3 days post ivig. He vomited 6-8 times in 8-10 hours. Every hour or so, producing about a cup of bile each time. This is EXACTLY like that - he has now thrown up 3 times. Its 11 am he started at 8:00am...and since I'm watching each time, I can see it is pure bile (I've given him a little of burnt toast..but the bile is coming out of nowhere - he is EMPTY each time he is done...and only taking very small sips of fluid in between). EXACTLY like post ivig. So now I'm wondering if post ivig was a herx...according to Dr K about 10-20% of his kids get this violent vomiting a couple days after ivig. Maybe those are the kids that have an active infection, not just the post infection autoimmune stuff...and the ivig is killing it of. He had ivig on Thurs/Friday and violent vomiting on Sunday night starting at about 8pm...vomiting started approx 77 hours after first dose of ivig. He had his first dose of doryx on Wednesday afternoon. Vomiting started approx 64 hours after first dose of Doryx. We know he has myco P, which also causes herxing when treated. If killing it off can cause him to vomit and produce bile - then maybe the ivig and the dorxy did the same exact thing. I'm actually now HOPING he throws up some more. PS - not the flu. he's FINE, feels fine until the need to vomit, and no one has the flu. Also no diarrhea. Thats my theory at the moment. My son has an iron clad stomach. With the azith, even at high dose he never had any issue. I don't even believe in herxing...but if this passes in 24 hours and he is doing alot better right after that, I mean mood and OCD stuff, like he did after ivig- I will become a believer! I'll keep you posted. For now I'm going to stick with the Droyx. I'll let him skip this morning dose, and see if the vomiting has stopped before dinner time, and give him another.

At first when I read this could be a herx...I thought, no, if yo look up the side effects it says vomiting is one of them, and its notoriously hard on the stomach from what I've read. Its not the flu, I can just tell. AND THEN I had a flashback to exactly 3 days post ivig. He vomited 6 times in 8 hours. Every hour or so, producing about a cup of bile each time. This is EXACTLY like that - he has now thrown up 3 times. Its 11 am he started at 8:00am...and since I'm watching each time, I can see it is pure bile (I've given him a little of burnt toast..but the bile is coming out of nowhere - he is EMPTY each time he is done...and only taking very small sips of fluid in between). EXACTLY like post ivig. So now I'm wondering if post ivig was a herx...according to Dr K about 10-20% of his kids get this violent vomiting a couple days later. Maybe those are the kids that have an active infection, not just the post infection autoimmune stuff. He had ivig on Thurs/Friday and violent vomiting on Sunday night starting at about 8pm...vomiting started approx 77 hours after first dose of ivig. He had his first dose of doryx on Wednesday afternoon. Vomiting started approx 64 hours after first dose of Doryx. damn SF mom...I think I'm starting to become a believer. Also, no diarrhea. We know he has myco P, which also causes herxing when treated.If killing it off can cause him to vomit and produce bile - then maybe the ivig and the dorxy did the same exact thing.

Ds 11, started doryx three days ago. All had been going well. He had been on Azith, 500mg daily, for about a year. He just woke me up saying his stomach hurt - and then he vomited. He said it woke him at 3:00am hurting, but was able to go back to sleep. Last night he had his antibiotic a little late, but it was still an hour before bed. He didn't have it with food, because he ate a huge dinner 1 1/2 hours half earlier ...at 7:30 ate pizza, at 9:00 took antibiotic, at 10:00 went to bed...had probiotic before bed. He had NO problem first two days. Actually two and a half, so he had 5 doses before this. We are leaving for a week of family vacation tomorrow (not vacation for me!) . So now I'm wondering if I should spend the day trying to get another antibiotic for him, or is this fairly common? I know a minor side effect is stomach upset,but when I read "minor" I usually think discomfort, not puking up bile. I'm hoping its just the food, or lack of it. Thought he would have had enough still in there - he had a while personal BBQ chicken pizza himself! I have him taking the doryx instead of docycycline because its supposed to cause less stomach upset (and other side effects)

Ds 11, started doryx three days ago. All had been going well. He just woke me up saying his stomach hurt - and then he vomited. Last night he had his antibiotic a little late, but it was still an hour before bed. He didn't have it with food, because he ate a huge dinner 1 1/2 hours half earlier ...at 7:30 ate pizza, at 9:00 took antibiotic, at 10:00 went to bed...had probiotic before bed. He had NO problem first two days. Actually two and a half, so he had 5 does before this. We are leaving for a week of family vacation tomorrow (not vacation for me!) . So now I'm wondering if I should spend the day trying to get another antibiotic for him, or is this fairly common? I know a minor side effect is stomach upset,but when I read "minor" I usually think discomfort, not puking up bile. I'm hoping its just the food, or lack of it. Thought he would have had enough still in there - he had a while personal BBQ chicken pizza himself!

She said they are testing blood, not just spinal fluid. She mentioned that two doctors - Carlos Pardo at John Hopkins and Ian Lipkin will be looking for other infections. I just threw it in my question since she had mentioned spinal taps on the kids in the study for anitineuronal antibodies. She did say she is writing the Clinical Study- for PANS (Pediatric Autoimmune Neuro-phsychological Syndrome ) where they will look at other infections that cause pediatric neuro-psych symptoms in conjunction with immune reaction. This includes Lyme and mycoplasma. Here are pardos and lipkins bios: http://www.neuro.jhmi.edu/neuroimmunopath/lab.htm http://156.111.235.11/pharm/cumc/profile.php?id=177 I haven't done any research on them, does anyone happen to know if either has done any lyme research?

my son has a thing - we call it a "compuls-tic" its very hard to distinguish it if is a tic or a compulsion. He looks very quickly into the sun. if you were watching him, you would think he was just ticcing. Its only because he told me he's looking into the sun, that I now am aware that when he is making that movement - he looks at the sun, which seems more compulsion than tic...but in the end, doesn't seem to matter what it is categorized as. He had both a type of OCD (intrusive thoughts) and tics...and then compulsions.

listent to swedo's talk last night on blog radio - toward the end I call in and ask how they are going to deal with co-infections in the new study. They will be testing for them. In the first round, she is going to try to isolate pure strep related, so sound liek if you have ANYTHING other than strep, you won't qualify for the study int he first round. Then next few rounds - she will take it on. Sounds like they are going to be using the spinal fluid to srceen for them - so far better than any blood testing! I'm VERY interested in what percentage of these kids have co-infections. Swedo is very interested in broadening the scope of the defintion to PANS - and looking at how MycoP and Lyme involved. http://www.blogtalkr...san-swedo--nimh

you can listen to it by clicking on the link. It stays posted up there. We should probably add it to "pinned" information - does anyone know how to do that? BTW - thats me asking how the new study will deal with co-infections like lyme and myco P...being able to only ask one question was a tease! Could have grilled her all night. It was pretty good - I was expecting the same old stuff - pandas 101 - but there was a lot of new info. New name - PANS was mentioned. I have to spend some time looking up a couple people she mentioned Ian Lipkin and John Pardo involved in the study this morning. And I was only half listening because it was dinner time, I missed the first 20 minutes. I'm sure that was all the basic stuff. I have to listen again and take some notes. The moderator was AWESOME - that's probably why the interview was so good - she has a daughter that was dx'd with pandas (years ago, a very mild case that she grew out of). So, she had some pretty informed questions for Swedo! http://www.blogtalkr...san-swedo--nimh

http://www.blogtalkradio.com/show.aspx?userurl=the-coffee-klatch&year=2011&month=02&day=10&url=dr-susan-swedo--nimh

That must be a typo. The normal ranges vary a lot depending on what lab, and who's chart you are looking at. Our immuno said he wouldn't consider it really low until under 500 (for a 10 year old) NORMAL 9 - 11 yr IgG: 608 - 1572 IgM:52 - 242 IgA: 45 - 236 That is from the chart for my insurance carrier. Similar to others you will find online. Our lab consideres under 800 low. My son's was 689 prior to ivig and 801 after ivig.

Stanford will probably squish the pandas right out of him. You would think that in that forward thinking, research oriented, progressive treating, intelligent environment you would find at least one doctor supportive of pandas...think again. It starts from the top down. If there is one head guy that doesn't want pandas associated with the institution...good luck finding a doc there that will treat you. At least with something more than a round of antibiotics. I do know they helped at least one pandas kid, but it was pandas-anorexia, and the child was from what it sounds like, close to loosing her life. I hope he can make some headway with them. He isn't an immunologist is he?..that's what they need. A pandas immuno person. The "key" ped. immunologist there - "doesn't want to be a pandas-doc"...Well, I don't want to be a pandas - mom! So help us get rid of this thing!!!!!