norcalmom

yeah Dr K said that if he does have the initial side effects - headachs vomiting, then he thinks its a good sign, that imorovement will be fairly quickly and dramatic. And it was for us. (and we had both migraine and vomiting!) He ALSO said that he felt that kids that have food and eating issues, have moree tendancy to need another ivig. Even though my son's eating issue aren't his own (he hates seeing me eat) Dr K said he is still in that category. Weird.

love visuals, but not sure the venn diagram will work. I see where you are going. At first glance I thought you were trying to show the % of symptoms the disorders shared...but your list shows you are describing the percent of people in each group that are in another group as well. I think it is confusing because of that as well as the symptoms and the dx is blurry. You treat sudden onset OCD the same as ARF. I think of ARF and Syndenhams Chorea as specific well defined diseases, (like pandas) but tics and OCD as symptoms, that belong in a number of groups. OF course there is lots of OCD and tics that don't have a know cause, maybe they should just have a separate bubble - outside the whole diagram since you can either have the diagram show the amount of people that have the same symtoms or the amount of symtoms share by each disorder. Call them "traditional OCD" and " Tourettes" See where that is confusing...Tourettes is not in the group. but it shares the same symptoms.... ADHD and Lyme should also be on there. MAybe a "features list" would work..(I'm buying a new car...so I've been looking at these and comparing what each car has or dosen't have, like the consumer reports of neuro pschologicical disorders!) It depends on if you goal is to show the symptoms they share, or the % of people in each group compared to the other group. I don't think you can get it both ways, and that is why the diagram is confusing. Check out this little video someone sent me a few weeks ago. Maybe you've seen it. I love this guy. Maybe you will come up with something like this for us?! enjoy.

I dunno, but when I asked my kid teacher if she ever saw DS ticcing in class she assured me (this was at the beginning of tics - I was jsut starting to see them at home - that he never ticced int he classroom, and it was probably me being a little paranoid or over reacting. Then one day she saw him on the playground, and he was ticcing non-stop. but he never ticced in class. He would get home and it would all come out. In addition - I am my child's only trigger when it comes to one weird OCD thing - eating/swallowing - he cannot stand to see or heard me swallow, eat, cough, clear throat, sniffle. I really feel that it is because he is closest to me. No one else bothers him. While I manage to live with this very annoying thing (my friends think he has it made - since I deliver his dinner to him in his "man cave" and he gets to eat in peace by himself every night!). It hurts me more than him. Since ivig this is really the only noticable thing he has left. I still notice other little things - but they are almost subclinical.

I did a little serching on the topic and found a letter from Cunningham posted on saving sammy face book page that says "A child may not have high anti-neuronal antibody titers and still have a high CaM score" I'm assuming she is referring to a pandas child. As for Tourettes or Pandas it isn't definative (since her tests are only offically studies) and Nothing says you can't have both either. BUT, based upon Cunningham's original paper -(which has some significant problems, one being small sample groups), she found no correlation between well defined cases of Tourettes or Traditional OCD and raised Cam K (or antineuronals). So, its more probable that your child has pandas (or an active lyme or strep infection) than those. ..AND yes they are now starting to find other things that will cause a high Cam K (like Lyme, or uncomplicated active strep infection in non-pandas kids) So you might consider also checking for Lyme, or other things (like mycoplasma) that can cause these symptoms as well as raised Cam K. I have never seen anything that says that other infections don't raise anti-neuronals. (maybe fr88 has something?) but I have heard from their lab that Cam K is the important number. BUT I've also heard that at least one pandas Doc (Dr L) is more interested in the antineuornals.(at least someone said she was about a year ago) There are hundreds of anti neuronals, and the lab is only testing for four likely ones. I think I heard Cunninghams say that on the OCD conference DVD made of her presentation, and she said they kinda got lucky in their selection process of which anti-neuronals to test for. here is an excerpt from a letter from Cunninghams that is posted on the Saving Sammy facebook page:http://www.facebook.com/topic.php?uid=104887432702&topic=16040 Hope that helps. Good luck with your treatment. I'd get a pandas doctor t look for infections, check immune function, and treat with antibiotics and or ivig if the doc confirms pandas. Sounds like it to me! But, like fr88 says - you need a doctor. One that knows pandas well. Several specialist are posted in the thread pinned at the top of the board. Best - ________________________________ Thank you for your incredibly supportive letter below. We are not certain but think that there will be patterns of behavior that go along with ...particular antibodies. This is part of our study. Some children have anti-neuronal antibodies and generally not all of them but some do have high everything including the CAM kinase levels and they generally have tics and OCD together. The CAM kinase level may reflect either type but was very associated with choreiform movements as in the nature medicine paper that I will attach and probably have sent you before. CAM score of 140 is definitely positive but in the lower range and her anti-neuronal antibodies may contribute as we do see in other children. We are trying to compile the data to eventually publish what we have found from the parental network of children. Your description below is very important for us to know how to place your children as far as diagnosis and symptoms. Thank you for sending this information. For the anti-neuronal antibodies, the thing to look at is the normal mean because this is where most normal children fall. Some without symptoms can have high levels but we set up the range to let you know what it is but for example the titer of 320 is very high for anti-lysoganglioside. Some children are higher but many who have symptoms are at this level but a few normal children may have that 320 titer but not so many. That is why the normal mean is 160. This should be on your paperwork. As for your son, the CAM kinase score at 189 appears to be associated with behaviors or movements either one. A child may not have high anti-neuronal antibody titers and still have a high CaM score.

Swedo (in her papers and in the video presentation at Mind conference) states that kids may start out with strep as a trigger and later other infections will cause exacerbationa s well. Did DR C say that antineuronals aren't raised by other infections or viruses? Please let know if she has published something on this. I try to read every bit of info she puts out, and can't wait for the lab to publish something new. I'd like to read about that - that would be new information for me. Anyone out there have Lyme or PITAND and high anti-neuronals? I mean no offense either. I just want anyone dealing with PITAND to know that the Cunninhams tests provide very useful information to them. Its because we DIDN"t have titers of positive cultures that I decided to get it done in the first place. I think we can agree, if you child has neuro-pych symptoms, high Cam K/anti neuornals, and they DON'T have an active strep or Lyme infection, they can probably be helped with pandas protocal - antibiotics / IVIG. I agree - check with your doctors before trying things. I'm very conservative. I don't feel that a blood test is trying anything however. Its testing, to see if you might be a candidate to try something. OK -I think we've beaten this one up!! Best - norcal

Personally, I'd keep him on the antitbotics. Because if he gets strep tomorrow, you REALLY won't know what is working.

I beleive the original question was do the cunningham test apply to PITAND. The answer is YES. I would argue they are more valuable to a PITAND kid than to a PANDA kid. The practical value is they can help you determine a path for treatment i.e. - do I take this kid to the immunologist (or pandas expert), or do I take them to the psychiatrist? The cunningham tests don't tell you what the infection was that triggers a raised high Cam K or raised antineuronals. It doesn't tell you if there is still an active infection. It simply tells you if you have abnormal levels of these in you blood, and then you need to work backwards. Cunningham has now stated that TWO additional things BESIDES pandas caused by strep, and Sydenham Chorea can elevate Cam K. Those two things are Lyme and an active strep infection. By that I mean a child - a NORMAL child - will have a raised Cam K if they have active strep. She told me the average is 135. Not median, AVERAGE. I've asked for the range, median, and number of kids she tested for this group - but didn't get a response. In addition to these two, I think there are others because Dr C mainly studys Cam K and the heart. The majority of her funding comes from the heart association. So, I THINK there are other things that raise Cam K, but haven't researched that too much. The fact that just a strep throat (with no pandas symptoms present) is from the newest letter she sends back with results. I got this about 2 weeks ago. My son has done two sets of cunningham test. One prior to ivig, one post. Neither in exacerbation. Additionally, this is a STUDY and she needs and wants all kinds of blood for it, to see what can raise CAM K / Neuronals. Without that, it isn't a valid study. If she is only testing kids with pure pandas/ strep, it has no value - because she would lack the data to say that other things DON'T raise the Cam K. And, she is finding that some DO. So, if your child has a raised CAM K it can mean: 1) An active Strep infection 2) An active Lyme infection 3) A post-infection trigged disorder such as ( whatever we should be calling pandas).. and syndenham chorea 4) WHAT ELSE? Who knows. That is what she is trying to determine, in addition to proving point 3 (as well as seeing if certain antineuronals result in certain symptoms) I think there is at least some antecdotal data on pneumonia as well..does anyone have anything from Swedo/cunningham on this one?) And the third point above is largely proved by the mouse study, not the cunningham tests. Where they take the anitbodies, but not the infection, and give it to a genetically predisposed mouse. What it really means for most of our practical purposes is - it tells you what they probably don't have, that being "pure" tourettes or OCD. They probably have a messed up immune system and antibiotics and or IVIG will help them. If they don't have a raised Cm K or anitnueornals, IVIG probably won't help them, because they don't have strange antibodies that shouldn't be there in their blood in the first place...so regulating this isn't the path to pursue. Probably looking at traditional phych meds and CBT or ERP. If I had listened to my doctors..my son would be on psych meds and ticcing his head off instead of in school having a great day. THANK GOD I listened to parents I found on the internet. Of course ultimately you make up your own mind as to how much the info can be validated by looking at the actual studys and asking your own doctors. My child is PITAND - we don't have any history of strep (but that doesn't mean it didn't cause this all in the first place, because, you can't tell by titers). Swedo has stated that over time many kids begin to have exacerbations caused by other viruses. As for the original question - Dr C was happy to have him in her study. AND he's been helped by both antibiotics and HUGELY by IVIG. AND we are going to also rule out lyme (or treat it) because he still have one annoying OCD thing I'd like to see gone, and we will consider another ivig once I'm certain there is no underlying infection. So, I LOVE the cunningham study, mostly because we DIDN"T have an obvious strep trigger (if your kid only reacts to strep why bother? you can obviously see strep=exacerbation). For me this test showed me proof that this is what my child had, and that getting antibiotics and IVIG was my best course of action. DS who is PITAND would have a different LIFE without this test. I would have taken his care in a totally different direction without the information it gave me. And he is PITAND.

Denied. We should hear back in the first appeal Amy day now. Laying in bed last night thinking about this. Insurance coverage would change sooo much. Not just The money, but the perception of how to treat pandas. I think so many of us wait to long for ivig. Because if doctors Won't prescribe it, insurance companies call it "experimental", it scares the heck out of parents. I dint know any thing about how to get insurance companies to change, but I feel that some of them have knowingly Done much harm with their policies, I'm thinking class action law suit might be an option! For example, our provider, begins and end in A, and their own website has a definition of what pandas is (and they list 3? Doctors that reviewed it) and in it it says in severe cases ivig and pex are used as treatment.

Failed all but two - and one of them was at the very lowest passible number. For some he created none at all. Recently found VERY high IgG for mycoplasma. but no IgM (which would indicate active infection). This is another pneumonia...so gotta wonder if its connected somehow. Also had slightly low overall igG and Subclass 1 deficient.

DS would grind his teeth at night when having pandas exacerbation. has halso had jaw clenching. Did you child start grinding teeth, or teeth clenching that you noticed? Doesn't take too much of this behavior to cause soreness.

Mycoplasma igG and IgM immune panel that includes - IgG IgG subclasses 1-4 strep Pneumoniae serotypes (to see if you child makes antibodies to pneumonia, which they should if immunized for it) There are some "pinned" pages at the top of the forum that Buster has posted. One is a flow chart - and kind of goes through the tests most have been through by the end of this ordeal. I would get as much testing as you can prior to that meeting...since you have to wait 4 months! If you have a pandas friendly doc, you can certainly find some information that will summarize many of the tests we end up doing over the pandas journey. You should do basic Lyme panel too, if you have any doubt that your child could have ever been exposed. You can find alot of info in those pages and can print some things for your local doctor.

I'd be wary of this dose. I know most of us that don't have clear immuno deficiency complications usually do a high dose ivig of 1.5 or 2. I do recall reading something about high does vs low does on the forum, and I HTINK something was cited that low dose can be inflamatory, and high does anti-inflamatory? You should do your own googling around. Maybe someone that was on that thread can remember or you can do some digging. I think I have also seen people switch from low to high does and gotten better results...and or a worsening on low does (don't mean to scare you, certain the high does produced "turning back or paes for some) We did ivig "in remission" well, for us at baseline...which had some symptoms. And did not produce horrible turning of pages. Just some odd short lived stuff. But we did 1.5 dose. I don't see why more likely to get covered. (other than it costs less for less medicine!) . Are there any studies on trich and low does ivig? As far as I know only pandas studies are at high does.

personally, I'd be careful with steroids this time of year. They suppress the immune system, making it a lot easier for the kids to come down with something. Aren't we already int he worse time of year for strep? (Oct-April?) . Steroids always seem like a double edge sword to me..Maybe some other anti inflamatory? I 'm sure you already do fishoil. Maybe a couple days of advil?

Just wanted to share a couple things we've found with my son over the past 18 months. DS did not culture positive, or have high titers for strep. We do believe he had peri-anal strep, which would not cause rise. HOWEVER he has astronomically high IgG for mycoplasma 2430 (normal under 100) but IgM for mycolplasma is inside the normal range. From what I have found about these titers, there is even less information on them than strep titers. According to my doctors (one local, and Dr K) the high IgG doesn't mean anything. Means he had an infection, and it could stay high for over a year. IgM indicates that there is no active infection, however the studies I've read seem to debate if a prc (pcr?) test would be better. He's been on Azith for over a year. Which SHOULD have cleared any mycoP. Full dose for most of the time. At the beginning he had some stomach issues, which he fairly quickly adjusted to. Things that helped with this were - I broke the dose in two. gave half in morning, half at night. Also, I give the one in the morning with food, or food within a half an hour or so. Mostly I think he jsut got used to it. I can give him a full does now on an empty stomach and it doesn't bother him (I still break it up tho). We went to a gastroenterologist and got a bunch of tests when we first went on Zith, no yeast, c-diff or celiacs, but did discover low IgG at that time..I am glad I decided to leave him on this antibiotic. DS does not have ANY history of strep throat. According to our medical records, his sister had it once. He did however have pnemonia at age 6. And, also he makes only one antibody of the 14 serotypes tested for strep pnemoniae. And yes, he went thru some "phases" between 6 and 10ys that were probably missed exacerbations. DS is pitand. He will react to viruses. Although, no exacerbation was as bad as the one that I think was initially caused by the perianal strep. AND I find he reacts differntly to differnt things. For example, he had a stomach flu last spring, that only cause a 3 day exacerbation, where a slight cold set him off for weeks. Now that I know a little more about mycolplasma (walking pnemonia) I realize that slight cold, could have been mycop. One of the hallmarks is an unproductive cough. (which, as Buster noted, is not usually present in strep throat). I think we just got lucky that that was the antibiotic our doc first prescribed. DS is now almost 4 months post IVIG. He is doing well, but still has one very annoying OCD thing and is subclinical with irritability and some other stuff, but a mom would noticel). Prior to ivig he had the gammut of symptoms - tics, compulsion, insomnia, bedwetting, OCD...the list goes on. HIs numbers have improved since ivig, pretty much correlating to his severity. the blood draws prior to ivig were at baseline, not in exacerbation. prior to ivig [b3 mos. ]Post ivig[/b] IgG 680 low 801 normal! IgG sub1 386 low 396 still low all other subclasses normal before and after CamK II 176 high 131 borderline low pandas/high normal range Antilyso. 640 high 160 normal! Anti Dop 1 1000 normal 2000 borderline high. all other cunningham tests exactly the same before an after. In normal range. We tested him for Lyme and mycoP AFTER ivig, so don't have any before data. Lyme was inconclusive. We have an appointment with LLMD in one week. This LLMD has experience with mycoP, and other intercellular bacteria, and in addition to full lyme eval, will be asking about perhaps adding another antibiotic or switching. I really just want to run out and get another ivig - since his improvement seems to have stopped, and Dr K said if he slides back or stops, another ivig might be in order. But, my gut is telling me that DS's key is the mycoplasma-doesn't make strep pneumonie antibodies - lowish IgGand sub 1 - autoimmune issues. And the solution might be another ivig, or might be switch or adding an antibiotic. And, if we do another ivig, I'm going to wait until the brunt of cold an flu season is past. Hope that helped anyone with PITAND or possible "walking pneumonia" issues. I think that both strep and mycoP are so ubiquitous that our kids should be tested for both at initial screening, not just the strep. Of course it has taken decades just to get proof for strep connection, I'm not holding my breath! And, since the initial infection - can be MONTHS before first exacerbation, we ALL probably missed whatever the fist trigger was. It isn't until later that the infection and the pandas symptoms come concurrently. This is way everyone should be consulting with either a pandas expert..that will be checking for immune disorder and other infections, or pandas friendly doc that understands that absence of strep or titers...doesn't mean the child doesn't have pandas, or, another another underlying infection.

I've been wondering the same thing...I would like to try DS out on a different antibiotics, but I'm too chicken to leave the azith that has been working pretty well for over a year. Would like to try Augmentin XR, to see if that can get him closer to 100%.

Hi pIxie's mom. Wow. I was just looking up Addison's because I was curious about it (and bcs I have a couple of the symptoms, which I already knew). IT did say that chronic infection (esspecially fungal) can bring it on, as well as T.B..I forget what else. I did notice that the tests for it are all blood tests (as well as an ultrasound of the glands to determine the extent of damage the disease may have caused). You indicated that you had taken a saliva test. Sometimes I wonder if one condition may cause false pos or negative on a different test. Persoanlly, given the severity of an addison's dx and drugs to treat it, I'd see an endocrinologist for a second opinion, and/or do some more testing. (maybe you already have?) Wishing you the best in your recovery - sounds like you are making great strides!

Yes - we saw a difference too. The healing isn't linear however, at least it wasn't for us. But - my ds had a throat clearing tic disappear after between day one and two, and ont he afternoon of the first day was VERY happy - and had not been truly happy for a long time. I thought coincidence and wishful thinking at first, as he did have ups and downs, but it did start immediately. Best to you!

Have you seen an immunologist to see if you son is making antibodies for pnemonia? Many pandas kids are immune defiecient, and they will keep coming down with viruses/bacteria that will set off pandas episodes. I'd get some immune testing done - Igg and Igg subclasses, pnemonia serotypes, MycoPlasma (this is "walking phemonia" and anything else an immunologist recommend. Also - that "unproductive" cough that ped is asking about - that is a symptom of mycoplasma pnemoniae - the walking pnemonia I mentioned above. Good luck. We made alot of headway in dx our sone with one trip to immunologist. Even though fairly healthy, he was immuno deficient...as MANY pandas kids are.

I'm so sorry you are going through this. Be strong. You are doing the right thing....high does IVIG has been great for our son, and I'm sure getting Dr B on your care team is going to make huge difference with your daughters care. Sending you good thoughts -

My understanding is that these antibodies do no attack strep...they attack neurons - your own body. The strep looks very much like certain neuornal structures we have. That is what "molecular mimicry" refers to. I think Cunninghams is trying to find out if symptoms correlate to specific anti-neuronal antibodies...or if specific types of infection correlate to specific anti-neuronals. I did get an email back about the Cam K and they said they don't know how long it takes to fall in "normal" sera after strep is treated. IT would have been nice and uncomplicated if normal kids with strep didn't produce Cam K. but it is what it is. They did not tell me if strep also raises anti-neuornals (Cam K is not an anti-neuoronal) . I'm sure they have started testing for them in "normal" kids with strep, but I think testing kids that have strep and no neuro psych symptoms is new, so they are still collecting data. It seems that this new information could mean a few different things. "to determine if pandas serum IgG reacted with Lysoganglioside Gm1 and GlcNAc, a competitive inhibition ELISA was utilized. 73% (11/15) of pandas sera binding to GlcNAc-BSA was inhibited by soluble lysoganglioside. In contrast only 23% (6/26) of non-pnadas sera were similarly inhibited. Lysogangliosides concentrations required to inhibit binding of pandas sera were significantly lower than non-pandas sera" To me that means that they put pandas IgG in with Strep (GlcNAc) and Lystoganglioside. ..and the pandas IgG attached to the lysoganglioside instead of the strep(the GlcNAc). (or at least is was not binding to the GlcNAc -i.e. it was "inhibited" by lysoganglioside.)..so I think that shows that pandas sera contains an antibody that likes attaching to Lysoganglioside. Competitive-inhihibition is like a contest to see who the anibodies will pick... will it pick the strep antigen (GlcNAc) or will it pick the Lysoganglioside? AND (again my understanding..which could be very wrong!)(this is not fromt he study, but form reading the forum and other stuff) the way the immune system works is it will get positive feedback for making this error- and keep producing this "rogue" anti-body (anti-neuronal antibody) because it thinks it is doing a good job. It found somehthing to attack (bind to), so, keep sending out more of that type of antibody. FOR those interested in Lyme - Here is something I just came across trying to find more on lysoganglioside normal functions...didn't find that answer, but did find abstract about post lyme syndrome (or chironic lyme syndrom) interesting...and anti-nueronals. (Lysogangliosdie and others) http://www.ncbi.nlm.nih.gov/pubmed/20227484

I sent an email to ask, but don't expect to get too much info on study stats they haven't published. Browneyes- Cunningham tests are a study of pandas kids blood and a protein called Cam Kinase II as well as 4 anti-neuronal antibodies that are found in high amounts in Sydenhams Chorea as well pandas (and other?) symptomatic children. It costs $400 (tax deductible "contirbution") and you can get instructions for a kit so that you can get your child's blood drawn by emailing kathy-alvarez@ouhsc.edu There are lots of posts about the test, and I think the research paper may be pinned at the information on pandas on the first page of our forum (not 100% sure ont hat one...but its out there somewhere!) If you can't find it pm me and I will dig up for you.

DS got the migraine first night and another the end of second day (gave predisone both times) - and horrible vomiting - could not believe the amount of bile he produced - on third night post ivig (so ivig on Thurs and Friday, vomiting started Sunday at about 10pm). Vomited about 6 times, once per hour, and had about 2 cups of bile even on the 6th time. I was on the way to the ER if it happened one more time. Stopped at 5:00 am.

yes - here is an old thread I started when we had issues too. http://www.latitudes.org/forums/index.php?showtopic=8897&st=0&p=74035&fromsearch=1entry74035

I think this would indicate that you should really make sure you don't have active strep before taking this test. The fact that normal kids get raised cam K with strep might have them adjusting the ranges...along with just more data overall. They don't say what the range is for normal kids with strep -this would would be more interesting than the average. We did both our draws when my son was at baseline. First draw, 163. Second after ivig 131. For us, the numbers do correlate with symptoms. He's much better - but still one nagging intrusive thought thing (but before he had compulsion, tics, insomnia, ADD-ish stuff and academic stuff at baseline). They don't say if any ainti-neuronals are raised with normal kids with strep or not.

Do any of you with Lyme have kids that DON'T also have Lyme? I'm probably going to get myself tested, but I have a daughter, 2 years older than my pandas son, who has no Lyme (or any) symptoms. Is it possible to pass it congenitally to one child but not the other?