norcalmom

I'd get Cunningham's tests done. Even though it is still a "study" its the closest thing we have to a pandas test. We had low titers. High Cam Kinase - and other markers on the cunninham's test. Gave me confidence that pursuing pandas diagnosis and treatment was the right thing for my son.

Titers don't tell you if he has an infection - just that he had an infection (which you already know correct?). You can take two sets - and see if the titers are going up or down...I forget how long they rise for for a normal course of strep throat, but you could look it up, I think 8? weeks or so? then they should start going down, if you don't still have active strep. And of course, not everyone gets elevated titers...but if he cultured positive for strep 6 weeks ago...you will know for sure if his titers are "active" if you get his titers taken now (or whenever the high point is supposed to be). As for the family - you could do all of it. We only did rapid and culture on family members, no titers, but do know other folks have done the titers and found a carrier that way.

yes, tics, they would wax and wane (gone now-ivig)

That's horrible. So sad for that "troubled boy" and all of you and your children to witness that. Makes me wonder if troubled boy had pandas too...I think its all our biggest fear, that our sick kids won't get the treatment they need and what might they do if that is the case. I think you did the right thing - keeping the routine, and thank goodness the boy is OK. I'm traumatized just thinking about it - can't imagine how you feel!

I agree with nvergiveup - I would consider getting cunningham tests done at baseline, and in addition, you might consider a full assessment of IQ function (if you can) by a psychologist that knows disabilites, to see if something might be going on you can't see. Its hard to tell with is normal for 5 year olds vs what is not..because they all have "phases" they go thru, but this helped us. (sone was 10). We did ivig at baseline (indeed he was doing better than he had been for a long while) but seemed that after each exacerbation his baseline would creep up a bit. And, as nevergiveup mentioned - get all the ducks in a row to do ivig if it happens again. The benefit of doing it not in exacerbation is - its oooo much less stressful, and Dr K said that we probably wouldn't see "flipping of the pages" any more severe than the baseline symptoms we were seeing the week before we had it done (which was true - they were different, but not more extreme, and short in duration) (except bedwetting - did that for 3 weeks straight - telling me something was going on in that part of his brain! he only did this just before or during exacerbation previously). So, I'd second nevergiveup's opinion - I'd treat as aggressively as possible, and as early as possible. And get the C test - at least yo will then have a baseline to compare to. And, personally, if the C tests come back in normal range - I'd be very comfortable not doing ivig, so that might be a way for you to feel better about your decision. I also have this paranoia that ivig might become even more difficult to get. I think its getting easier, but with so few pandas doc out there what if a couple of them retired, moved to Europe, passed away...or decided not to treat pandas kids anymore? Also, you never know what goes on behind the scenes and how policies/politics are affected. What if a study is done on a drug that can control the symptoms, but isn't as good as ivig...but becomes recommended treatment...OK..I'm paranoid. Here is a link to what we found in my DS's assessment, one of the reasons I decided to move forward with ivig. http://www.latitudes.org/forums/index.php?showtopic=8897&st=0&p=74035&fromsearch=1entry74035

Here is a thread on this issue. I started this one, so I knew where to find it, but I'm sure there are more. Lots of interesting comments and info. My DSs handwrting is much improved since IVIG - but it was never stallar to begin with, so it still a messy little boys - the big thing is he doens't go over letters, (that were messy to begin with, and he would go over them with a messy hand again..making it illegible almost). And, MUCH better at copying form the board...he will actully come home with the homework written down on some thing, rather than a couple vague marks that we would have to try to figure out what they mean (and usually he jsut didn't copy sutff - he would try to remember - because he couldn't copy it) http://www.latitudes.org/forums/index.php?showtopic=8897&st=0&p=74035&fromsearch=1entry74035

yes..undertand the paranoia. I am taking oil or oregano at the least sign of a sniffle or throat tickle. Works great, bought at whole foods. Stephanie2 has some threads on it. I thin u can take OLE long term (even if it for your own peace of mind that you are not contracting and passing something to your DS) also anti-viral.

While I think it is important to keep looking for infection, you do not need an active infection to have pandas. It is something that happens after infection. Most of the studies talk about "post-strepoccocal" or sequele - this is after the infection. Sydenhams Chorea, happens several weeks after the infection - when it is gone. But if there is infection that is not cleared up by the body - obviously our pandas kids will keep producing the incorrect antibodies, that bind to neuronal cells instead of the antigen. It is interesting that you have low iron - we do too, and I've heard this is a fairly common pandas thing (also read it is a lyme related thing - Lyme people can chime in here). my DS's is not outside range, but it was low enough that doc recommended supplement. We decided not to supplement, but do now have ds eating iron fortified cereal. There is a school of thought that if your body is not processing/absorbing iron - then supplementing can cause more harm than good because it may store the excess iron in places it should not. I know he has a diet rich in iron, so, my thought is that he is not absorbing well. Anyhow, you might want to look into that before you start supplementing. Taking iron supps or eating iron rich foods with Vit C helps absorbtion as well. For us, the Cunningham test was very important in confirming diagnosis because we didn't have high titers for strep, or known strep throat. But, we did try to eliminate all infections as well (and are still in the process of testing for more !)

I don't have Dr Lat...so don't know about her insurance. DS had this before he had pandas symtoms, before I know what perianal strep was. And yes, it just looked like a red ring. He was not on any anitbiotics at the time, and I don't have any reason to think it was yeast, since he's never had any yeast issues even on high does antibiotics. I'm not 100% sure he had it - as he was never cultured. I just put some topical antibiotic ointment on it for a few days. (I dunno why that was my choice, looked like it needed to heal and could benefit from the ointment, and I had it in the medicine cabinet). someone had a post a few months ago that mentioned it, and I looked it up - google and click on "images" (not to gross you out). Some of the images are pretty bad cases, my DS's was just an irritated looking ring, about and inch wide. Like -" too much hot sauce last night dude?"..I didn't think much of it until a YEAR later, when I saw those images after googling it - and realized he has this just before all $%^ broke loose. I never brought him in for it. It went away on its own with a little help from the ointment. I think he had some bedwetting going on at that time, so I correlated the rash with him not telling me he wet his bed and going out in the morning with maybe a little wet hiney. Little did I know the bedwetting was first sign of pandas, followed my OCD, followed by tics - tics were about 2-3 months after the rash. It does not cause a rise in ASO...only anti dnase B, and by the time we tested titers (that would have been about 6-8 months after this rash, dnase for DS was at upper normal range. ).

If the whistle is a comulsion/tic - mentioning it may trigger it. Mentioning anything that is a tic/compulsion to my son makes him do it (or did - prior to ivig). I think the steroids for many don't kick in until the very end of the burst (you are doing 5 days?) up to a day or two days after...and in the mean time, can have the "regular" side effects of making them hyper. Hang in there, and keep us posted!

Thanks for posting this Vickie! I will be on the lookout for cunningham's study. I'm going to go goolge the "13th Congress of the European Federation of Neurological Societies in Florence, Italy" and see if I can dig up any more.

Keep me posted on that. DS does not have a history of strep throat -He's been on 500mg Azith for several months. He was on 250 (but upped to 500 during exacerbations) for a around 8 mos prior to that. We are around a year on Azith right now. He does not have high titers. We are doing more testing on Lyme and myscoplasma before switching antibiotics, Thanks for telling me what she rx'd for you! I've heard such positive things about Aug XR. How old is your son?

You know, I never questioned that - but I am going to ask our infusion center to break down the cost of the gaumex. And I will ask if the Doctor is paid a fee by the infusion center or by the drug company. Since I know our Dr was well compensated for his time at the infusion center (and I shared him with 2 other patients during the 8-10 hours he was there, so they were paying the same fee) I'd be surprised if he was also making money from the infusion center "selling" their product. It sound unethical. our Dr. billed his time separately, so I don't believe he's is getting paid a "commission", but something to be aware of.

Interesting. Have you seen anything that says the names of the proteins?

Yes. It applies to a number of infection triggered autoimmune diseases. PITAND, not just strep specific. My ds is PITAND, and his cam K score was 176 not in exacerbation. As well as one out of range anit-neuronal. (she tests 4 anti-neuronal anti bodies as well as CamKinase). Apparently Lyme can also cause a raised Cam K score. I think Myco P too. The test is not looking for infection. It is looking for abnormal amounts of antibodies in the blood. No infections need to be present for these antibodies to be there. Theory is that something in our kids bodies makes them produce more of these abnormal antibodies, and through "molecular mimicry" these antibodies "think" they are attacking the proper antigens, when in reality they are attacking the bodies own neuronal cells. At least that is how I think of it, its more complicated. Her measurements measure inhibition and cell signaling.. and I won't even dare to try to explain that.

I know that alot of our kdis sweat excessively, including my son. I don't think he was so thirsty that I was concerned about diabetes, I was more pushing water because he was sweating all the time. It went on for several months, before we started antibiotics.

There have been whooping cough outbreaks here that have killed several children in my area, so not getting vaccinated is also Russian Roulette. I did vaccinate my children, and do believe in vaccination, but there should be an identified group of at risk kids, like pandas kids, and their siblings. I wish they would figure out a way to make them safer, and give at an older age... BTW Cunningham has been involved in some vaccine work (studies?). If you are interested in vaccines, check out this paper: http://www.iom.edu/~/media/Files/Activity%20Files/Research/VaccineAdvEffectReview/2009-JUN-24/Meeting-Transcript-6-24-09.ashx I came across it a while back. This is a transcript of a meeting regarding vaccines last year. Cunningham presetnted for 30+ minutes, first half heart related, second gets more into pandas...her stuff is toward the end as I recall -page 134? ________________________________________________ here is the table of contents: UNEDITED VERBATIM TRANSCRIPT TABLE OF CONTENTS Page Causal Inference: Steven Goodman 7 Biologic Mechanisms: Weighing the Evidence: 41 Douglas L. Weed Multiple Sclerosis: Stephen L. Hauser 75 Molecular Mimicry: Robert Fujinami 110 Molecular Mimicry: Madeleine W. Cunningham 134 Genetic Susceptibility in Vaccine Adverse Events: 161 Jason H. Moore NOTE: This is an unedited verbatim transcript of the meeting of the Committee to Review Adverse Effects of Vaccine, held on June 24, 2009, prepared by CASET Associates, Fairfax, VA, and is not an official report of the National Academy of Sciences, Institute of Medicine, National Academy of Engineering, or National Research Council (collectively “The National Academies”). Opinions and statements included in the transcript are solely those of the individual persons or participants at the meeting, and are not necessarily adopted or endorsed or verified as accurate by The National Academies.

Stephanie - Thanks for all the great infor on this topic, and your link to flu recommendations (and like there to the Vitamin D council) . I used the Oil of Oregano on myself - I believe it cleared a sinus infection I've had for who knows how long. I am considering added the Olive Leaf Extract to Ds's meds. He's currently on 50)mg azith. I've been very hesitant to drop to 250 (prophylactic does) since ivig. But am considering it along with the OLE... a note on dosing - my DS couldn't tolerate 500mg azith togehter. Initially was giving 250 morning and 250 before bed. Now I try to give as close as possible - so that I can follow up with probiotics and those can stay in his gut longer. What usually ends up happening is morning, after school, and then I give probiotic around dinner. Some times he'll have yogurt for snack so he get probiotic in between does as well. On weekends, its at breakfast, a few hours later (snack time) and then probiotic at or after lunch. I feel that as long as he gets it before bed...and it has 12 or so hours before antibiotic does...we're doing pretty good. But we don't have any yeast issued (and hope never to!) You can do this with azith - it has a long half- life (that the term?) some of the other antibiotics don't last as long...so you have to give every 12 (or less) hours.

I'm pretty sure we had peri-anal strep too!!! It looks like almost nothing - and I treated it with antibiotic ointment and it went away (although its unclear how long ds had it - he was 10 years, not really interested in showing mom this kind of rash!) and, I probably wasn't too consistent in my treatment..but OCD started a few weeks after that infection. I didn't know that peri-anal strep existed until recently. Also, doesn't raise one of the titers (anti-dnase b or ASO...can't recall which)...so doing titer test for it even more difficult. The pediatrician (or any of the 9 docs or so we saw) never asked us about rashes in this area. ..did ask us if DS had a sore throat before tics started (after I brought up pandas). I don't know why they don't ask about other kinds of strep - just ASKING us if ds had a rash at that time would have cut 6 mos out of time period to get dx and him on antibiotics. Is this first time your child on abx? What are your next steps//treatment plan?

I wish I could offer some practical advice...but I think you are on top of all that. I hear you about the fear of death. I think I'll put a condition in my will that DH get an account on here and check in for advice! He would be clueless. You are amazing and strong..and brave! ( I've been putting off the kitchen remodel since this started!) Remodels are stressful and trying even without pandas kids...so keep that in mind. Keep us updated, and keep hope going. This two steps forward one step back healing process is maddening. Thinking of you-

We are asking ourselves same question TxPanda. had ivig in early August. We are still seeing healing. Since some docs now doing 3 +ivigs every 4-8 weeks right off the bat, wondering how that will compare to just one. Or how the timing might effect it. I'm thinking of doing one and then waiting 6 mos - year to do next. I think there is alot of evidence that there is still healing going on 3 mos - 6 mos. post ivig. I'd say we are 80%-90%. we are 10 weeks post ivig...and noticed some stuff just in last few days that tels me he's still getting better.

We did ivig, so I didn't answer your question. I can tell you that my son's first (altho may not have been his REAL firtst) episode presented more like S.C. so - probable strep (what we now know is a peri-anal strep, a minor rash treated at home with topical antibiotic cream) and then several weeks later some OCD symptoms, the several weeks after that -severe tics and a number of other symptoms. After that, every time he had an exacerbation - all the symptoms would happen at the same time. He was on antibiotics by approx 9 mo. post the inital suspected strep. They helped reduce both the intensity and duration of exacerbations. He would return to what looked like subclinical levels (only i would notice random tics, some OCD) at baseline. Initially we were hopeful that keeping him strep free and heath would give his brain time to heal. But, over the next 6 months he had 3 exacerbations, two that were apprx 5 weeks (1-2 week ramp, 2 week bad, then fade) and, most importantly, his baseline was not improving, after each exacerbation he would "keep" another symptom - making hsi baseline go from subclinical to clinical. During this time we also did an intensive assessment with a gifted and learning disabled specialist. Although the teachers told me that son didn't seem to be classic ADHD, they though something was up with his learning. And, he was exhibiting signs of anxiety (that were coming off more like he didn't care, or he was bored). HE wsas getting good grades, but I could see some frustration with school in general. What we found was that he was "twice exceptional" or 2e. His giftedness was masking some pretty severe learning disabilities. Causing some pretty severe anxiety. Specifically he was having problems with doing fine motor skills at the same time as spatial functioning. Like, writing down equations when doing math. Copying from the board. Any kind of graph or chart that required you to write as you go. He would always do the stuff in his head (we thought he was being a smart aleck - since he would often get even complex stuff right) he would loose 50% for not showing his work, or explaining his answers. This was because HE COULDN'T. Never knowing when he might be asked to perform something requiring this skill, was causing alot of anxiety around school, which he was masking with his "cool" attitude of not caring. I'm telling you this because I think there are symptoms of this disease that can remain hidden. So, if your child is showing anxiety, there may be some underlying pandas symptoms you can't see. DS was in bottom 2% of the two tests that specifically isolated the spatial fine motor processing. And, well above average in all other areas. He obviously had figured out how to compensate. Weather he was gifted in those areas, or weather his brain had developed these areas more fully because he was lacking in the one area we will never know. I am confident that he did not have that disability prior to pandas - and no mistake that it involves math and hand writing. So, we decided to do the ivig because of two things. One - baseline getting a little worse between episodes, and two - because of the assessment I could see it was effecting his brain. And even though almost subclinical, and completely functional, I didn't want to find out how that might play out with his self esteem and anxiety levels going into middle school.

We did them for me and hubby last year, and older sister to DS(pandas) but not him. I have gotten mine, and hubby will do his, but I am not doing daughter this year - because I've seen too many siblings get pandas too...so decided not to risk it even tho she is older and exibits no pandas symptoms. This is purely hearsay, but I was told, by a mom that talks to a lot of pandas parents, that one of the pandas researchers "lost" a couple pandas kids after vaccinations. As in, even ivig wasn't bringing them back. This basically has scared the $#@% out of me, so that is why I don't do it. Apparently it was years ago, but, she said that she did not think pandas kids should vaccinate (least not flu). She may have a different opinion now (after many more cases and years to observe), and maybe the vaccination wasn't the cause, maybe is coincided with something else, but I don't know, so I'm opting for no vax for DS. If I think DS has flu - I will try to make a case for antiviral meds. And of course do best I can to avoid getting sick. Weirdly enough, last year DS had a 24 hour stomache bug - and you would think that wold launch him into an exacerbation, but it didn't. He exacerbated for 3 days...that was it..when the illness passed the pandas stuff did too. He had a couple colds that set him off for approx 5 weeks (I would say usual exacerbation from 4-6 weeks for our DS) a few months before that...so its strange. That was the only time it was that short.

No reaction to dyes for us. We try to avoid them in general, but a while back I did some observation see if there was any connections - nope.

I do like trying to figure out which pandas kids have differing symptoms from Lyme. I did informal discussion on Cam K scores on Lyme board to see if possible higher Cam K's in general than pandas (like SC) seems to be a possibility (but only Dr C would know that for sure. We don't know if ds could have lyme. He has very minor overall Igg def. (not nearly as def. as need to get covered by insurance) and minor subclass 1 (or was it 3) def. He failed almost all of the pnemoniae titers. We didn't do the challenge re-vax, so don't know what that could mean as far as how much of the general population fails this test as well - it seems like alot do, since they were telling me about the re-vax testing before they even did the initial blood draw for it. I was surprised that DS had these def. at all. He's relatively heathy (except for the pandas) he did have pnemonia when he was 6 years old. No history of frequent ear infections, asthma, allergies. another thing to ask about might be - vit d levels and ferritin (or iron ) levels. My son was a bit lower than he should be in these areas (not low enough to be out of range, but low enough for Dr to say he should get some iron supplement) and recently read something on some lyme board saying this common trait for lyme patients? So, my data probably won't hep you bcs, we don't know if ds has lyme, but I will be following the thread to see if we can find some commonalities. As for the strep titers: I'm not sure titers considered when considering normal immune function. Many people in the "normal" community do not have titer rises when they have strep, and it can be for different lengths of time, and I know that at least ASO(or was id the anti Dnase B?) does not rise in cases of certain kind of strep (impitego, peri - anal)..so...that is a tough questions. So, maybe not from an imune response stand point - but having a known strep link, vs having a questionable strep trigger that might help. We have a questioable strep trigger (now think son had mild peri-anal strep 2 months before first symtoms..by the time titers drawn - 9 mos later - they were normal (and one doesn't rise for this type of strep, so, relying on one titer) . No history of strep throat.