norcalmom

Its been nothing short of wonderful for us, although DS still has some issues. What a wonderful way to celebrate the holiiays and new year!

Normal kids with strep throat have an average Cam K of 139...thats in the lower pandas range. This is normal kids ..non-pandas kids, that are in the middle of a strep throat infection..that Cunningham is now testing. It was included in a new letter that is going out when you have your kids Cam K taken. We just got my DS's back - he is 131 at 17 weeks post ivig. Here is the paragraph with the new information: "In looking at your child’s CaM Kinase activation values, you can see where they place on the graph in the Journal of Neuroimmunology article (Fig 3A) enclosed. We have tested normal children and their CaM kinase value is between 0-130 and children with strep throat average around 139. You will see your child’s value in the graph and can place it in a very high range 180->200 or in a midhigh PANDAS range from 180-165 or in the mid PANDAS range of around the average of 165-155 or in the lower PANDAS range from 135-155. In each CaM kinase test, a positive control (180->200) is tested as well as a negative control (0-130). These control values are included with your child’s Cam Kinase II score. " note ...my son is 131...which isn't listed on these ranges at all! (kinda skips 130-135).

You can also link to it from the pandas network homepage..its the speech at the Mind Institute- http://pandasnetwork.org/ same as one from EAMom - thats for finding the other link - and noting the panel discussions (I've never seen that one before) - I'm going to listen to that now!

My son is pitands. He will react to viruses (but differently) and weirdly, when he had the flu last year - he had a 3 day exacerbation - and it totally correlated to the 24 hour bug he had. So, a cough could set him off for a 6 week exacerbation, but the flu - which knocked him on his back, only gave him 3 days (and not even that bad of one). Different virus produce different antibodies and maybe illicit different immune response? Dunno.

My son is pitands. He will react to viruses (but differently) and weirdly, when he had the flu last year - he had a 3 day exacerbation - and it totally correlated to the 24 hour bug he had. So, a cough could set him off for a 6 week exacerbation, but the flu - which knocked him on his back, only gave him 3 days (and not even that bad of one). Different virus produce different antibodies and maybe illicit different immune response? Dunno.

I watched this for first time around a year ago. Today I was looking for something I thought that Swedo said (didn't find it in this video) but the video was better second time around. First time I watched the whole pandas thing was relatively new for me, so it was overwhelming. This time I caught more of the finer points. I know its probably in some of the pinned materials, but thought I'd post it here for anyone new, or anyone that wants a re-fresher. It is funny because there have been some post on "why the controversy? "do they get better?" and "Cam K anti-neuronals and what they mean" lately. This video touches on many of these topics. See the last 4 minutes for "what's the controversy about? And is pandas "real" its int he Q & A section. The video was taken at an autism conference at the Mind Institute. http://media.mindinstitute.org/video/toxconf/mov/swedo_2006_toxconf_hi.mov PS -one of the "finer" points i noted was that she said it is likely that pandas kids, like SC kids, have a strep exposure and the first time they react 5-9 months after the strep ..thats right, FIVE to NINE months (so much for titers nine months later!). Next exacerbation will be weeks, and after that days, after that the pych symptoms will show up before strep culture positive. Another "finer" point - Kirvan is from UC Davis, I didn't know that.

I was really happy and giddy, singing, dancing--it was a fun time, but my husband was like, "Who are you?". Sounds like I should get some for myself!!

Interesting! Has anyone tried it at night or morn on their pandas kids? Sometimes we use low does of melatonin at night, and we like the effects of that , but I'm wondering if pandas kids could benefit from the serotonin effect in the morning, or if it would make them worse...?

Congratulations ? ! Did you do the "challenge test" - where they give the vaccine and then test several weeks later to see if a response was mounted? My ds failed all but one of the 14 titers...but I'm too chicken to revaccinate. Did your son have an exacerbation a few weeks after vaccination?

try googleing the specific anti-neuronal. Some of them are linked to other movement as well as heart disorder. I think anti-lysoganglioside has some movement stuff linked to it. There are lots of papers out there on these anti-neuronals, as well as Cam K.. Cunningham seems to have chosen to look for anti-neuronals that have been investigated before in other disorders. Since there are hundreds, and she is only looking for four, I'm assuming she has a reason in looking for the four she picked. LEtter from Cunningham regarding Cam K and antineuronals: http://www.facebook.com/topic.php?uid=104887432702&topic=16040 Tubulin and SC: http://www.jimmunol.org/content/178/11/7412.full Interesting tests they run at this center for movement disorder: http://neuromuscular.wustl.edu/over/labdis.html This article (supporter of pandas threory - an neurologist in London) references alot of ther articles at the end. You could look up those articles for more information. "Anti-basal ganglia anti- bodies (ABGA) are found in the majority of subjects with Sydenham’s chorea.1,2 More recently other neu- ropsychiatric disorders or phenotypes have also been associated with ABGA. These include Tourette’s syn- drome,3 adult-onset tic disorders,4 obsessive-compulsive disorder (OCD),5 paediatric autoimmune neuropsychi- atric disorders associated with streptococcal infections (PANDAS),6,7 dyskinesias,8 dystonia,9 post-streptococcal acute disseminated encephalomyelitis (ADEM),10 myoclonus11 and post-encephalitic Parkinsonism or encephalitis lethargica.12 " http://www.acnr.co.uk/pdfs/volume5issue4/v5i4revgiovan.pdf http://bjp.rcpsych.org/cgi/content/full/bjprcpsych;187/4/314 http://scholar.google.com/scholar?q=anti-tubulin+antibodies+disorders&hl=en&as_sdt=0&as_vis=1&oi=scholart There's lots more...have fun reading.

For those of you out there interested more in myco p and testing for it, here is another paper: http://jcm.asm.org/cgi/content/full/43/5/2277 What I mostly too away from that paper is that some patient have weak antibody response so don't show a IgM. (perhaps because my son only had one titer for strep pnemoniae out of 14 serotypes!) so other types of tests might be in order (and there are a few differnt types of tests, not just igg and igm). There is also some mention of carriage int here, haven't looked into that yet...I was trying to find a graph that shows when the rise in IgG occurs after infection and how long it lasts. Also, I emailed Dr K - and he responded very promptly, he didn't seem too concerned about the high IgG..but he did say after one high does ivig that - If there is a significant improvement (as with my son) but the COMPLETE (90%+) recovery has not been achieved (as with my son) the following "formula" would apply: If there should an overall improvement of 75% or more I would suggest to wait and see how much further improvement shall materialize of the ensuing months. If further improvements shall stole and DS's condition gets "stuck" below 90% (especially if his full functioning is significantly affected), another treatment may be indicated. If there should be at any time REGRESSION of any significance that shall lasts for more than couple of weeks, another treatment may be considered. Even though his Mycoplasma pneumonie IgG is significantly elevated Zitromax that he has been on (by now) should have done the job and doubts that this particular anomaly has ANY significant influence on his overall condition. HE didn't say "booster" or lower does...he said another treatment. Which for us was 1.5 ivig. Here is excerpt from summary of the paper I found above for those looking into myco P: Serology remains a practical and undemanding method for the diagnosis of M. pneumoniae infection, particularly in young patients with a time of disease onset of more than 1 week earlier. However, given the low sensitivities of IgM assays, particularly for adult patients, who are known to develop weak antibody responses, and the need for paired serum specimens with a rise in IgG antibody titer for the diagnosis of M. pneumoniae infection, nucleic acid amplification methods might become the preferred diagnostic procedures for the diagnosis of M. pneumoniae infections, provided that the quality of the procedures is guaranteed.

Latissse makes a nice stocking stuffer! I was sad to read about the photos and holiday card.I feel the same way about photos taken during the "bad" times- its like I can see it in his eyes in those photos. I can't stand to look at them...I can imagine having such an outward sign of the illness staring you in the face. Its like when my son was ticcing. Painful to look at. I hope I can detach from that feeling someday. PTSD. FYI - I had some minor trich as a kid...not like your son...but I know the feeling! Still like to pull on my eyebrows sometimes. Its my version of biting nails or twisting hair.

Mom Love - thank you for the articles! I will it all in mind along with the ivig implications on this number. Phasmid - OMG - the sun thing was you guys?! I'd say that you are going to see big things with your ivig. Our kids symtoms are similar it seems. Fixit- Yes, that was me that mentioned it before. I keep harping on it because without the IQ testing, I never would have known, and I know most people don't have the resources to do all the tests that show all the ways this effects our kids. I used a phychologist that was very experienced in working with "2e" - twice exceptional kids, becasue that is what I though my son would fall into. There are many different types of learning disabilities I learned. We did a complete assessment (academic testing, IQ testing, personality and learning style) , but the most informative piece for me was the IQ tests - because it isolated different skills, and put numbers on things. I kept reading that pandas kids have decline in math and in writing, but my son was still pretty good at math, we were seeing decline, but not hugely significant, he still understood everything, and the biggest problem (which I didn't see as a problem) was that he wouldn't write down stuff "show your work"..he would just spit out answer. Most of the time correctly. but in 5th grade some of that stuff gets too complicated to do in your head. You can probably get just the IQ testing done. I hated the idea of giving kids IQ tests, but for this purpose, it was very eye opening. Think of it as a diagnostic tool for your child's brain rather than putting a number on their intelligence. The specific names for the test(s) are the Wechsler Intelligence Scale, Processing Speed - the Coding and Symbol search tests. Those are the two parts he bombed on. There are different types of IQ tests, know that Buster and EAmom had similar results for their daughter on what looked to be measuring the same thing on a different test (different name). So the two areas where we see pandas kids suffering - handwriting and math - this tests where these two functions overlap (using spatial abilites and fine motor at same time)...and it was screaming pandas because it was like...70 or 80 points under his next lowest score on these test. It invalidates the whole IQ test basically, but hat was fine with me, I wasn't there to get a number, I was looking for evidence that pandas was effecting his brain - and I found it. Based on that I could have gotten him in a 504 plan, and permission to use an alpha smart. He hasn't needed this since he responded so well to the ivig we had done in August, he is copying things from the board just fine, showing his work, taking pride in his work again.

oohh good, barronella was done! Thanks all for all the help!!

I'm going to make the appointment, can always cancel - good point. Get on that wait list. I don't really have any classic lyme symptoms, but I have a feeling that if he has lyme he got it from me. Grew up in RI, I know sooo many people with lyme(including my sister - classic bullseye case), and have pulled more tics off my body than care to remember.Or I'm just paranoid (must be mother guilt!) I've only recently been convinced I am not a strep carrier..after 4 cultures! Is mycoplasma pnemonaie the same as plain mycoplasma? or Myco P, ?..and is this common complication in Lyme? he also failed all but one of his strep pnemoniae 14 serotypes titers. I don't think I mentioned here, but asked on the pandas board, DS has Mycolplsma pnemoniae (igg) of 2430. Mycolplsma pnemoniae IgM -normal. On CD57 panel-he was in normal, but very low end of normal CD8 /CD57+ lymphe he was 4 (2-17 range) Ans CD8=CD57 +Lymphe 76 (60-360) only other abnormal labs were the Igg subclass 1 - low 396 (456-952) Monocytes - 16 High (3-10) Ferriten 33 (30-400) still in range, but very low for 11 year old boy on iron rich diet. Thanks again to all!!

peacebestill, welcome. I agree with all above. also want to ask you if you sone has had any changes in any behavior that you remember. ANYTHING odd. any insomina? bedwetting? nightmare? more frequent need to urinate? unusual fears or somehting that really bothers him? separation anxiety? obsessed with anything?asking "reassurance" questions?concerned with body image? any compulsions? my son presented with tics..no strep. We had some OCD, but I didn't know what OCD was at the time, and no one asked me about his behavior. Really, its anything a bit off. No one asked me if he had some nightmares recently, or wet his bed. Seemingly normal things that almost all kids do. These behaviors may have started a few weeks before the ticcing. I will give you an example with my son - his very fist pandas sign was he was becoming a pain in the &%# to eat dinner with. It was sort of typical bickering with his sister about talking with food in your mouth, other manners. It escalated over a few weeks he was extremely irritated by the noises we made (glaring at us, and expressing disapporval of our seemingly flawless table manners). And his mood overall became irritable. These were the first signs..then I think some bed wetting, some nightmares or insomnia..not every night, at first once a week, then 3-5 times a week...so that is how it started for us. And a couple weeks later the tics. Your son could just have a transient tic, but as advised by all before me in this thread, I'd make sure that all infection is checked for an eliminated. And if the tic persists I'd run a cunninghams test (in addition to the ones recommmended above)- a blood test (its actually a study) done by madeline cunningham at u of OK that tests for anti-neuronal antibodies in the blood. you can search the forum for her contact info. There is high correlation between these antibodies and pandas. you can search the forum or post another question for her contact info if and when you need it. hang in there. tics are soooo hard to watch. And please let us know if he has any of the other symptoms above. best - norcalmom

Thanks for sharing your info Phasmid. Physically, we didn't have a link to strep...no history of strep throat (don't think he's ever had it) BUT do think that the exacerbation that set this all in motion was related to peri-anal strep - a mild case that I treated at home with topical antibiotics (didn't know that was what that rash was at that time...but he had it a couple months before every think hit the fan...and I found out about that kind of strep a year later when I fell upon it on some site and recognized the rash. No history of upper resp. infection (not bad anyway)...EXCEPT he had a documented case of pnemonia when he was 6..and yes...I think his symptoms started after that. I don't think you could call it "sudden, acute onset" at that time though. I can't remember. Just that over the years he had "difficult" phases and I can remember two times where he had unresonable fears (water, not swimming but passing over it in boat, car or plane). And he "grew" out of them. HIs pandas(he's PITAND actually) symtoms - OCD (he cannot watch me eat or swallow anything, even saliva...and its just me that sets him off, and my husband a little). This is the only pandas thing that is clinicaly significant since the IVIG. all the other symptoms or gone, or very minor. However, we haven't had any illness yet this year. He had a very minor 3 day cold at week 7 post ivig, and did have some symtoms, but they were minor and gone in a week. HIs PITAND symptoms were: Tics - violent head shaking for hours each day. Various facial tics, some small audible tics EXTREME irritablility short attention span hand flapping Inability to do spatial tasks while at the same time using fine motor (can't copy things from board, can't do math and write at same time -He was in bottom 2% in the test that measures the ability to do both at the same time...above average to gifted in most other areas, so it really screamed pandas. bedwetting - in exacerbation only obsession with death nightmares insomnia separation anxiety reassurance questions daytime frequent urination (not too bad..but teacher noticed) body "obsession" - he was not restricting his food, but was constantly talking and thinking about how he looked. Felt he looked "weird", fat...usually inked to the reassurance questions and and almost forgot my favorite... the compulsion to look into the sun Most of symptoms would disappear or become subclinical when not exacerbating. He improved greatly on Azithromycin. He had 3 or so exacerbations last year, and after each I could see his baseline creep up...instead of down..so that is when we decided on IVIG. There were 3 things that made me go the ivig route: 1)baseline moving in wrong direction 2)psychological testing that revealed that spatial/fine motor part of his brain not working AT ALL 3)cunninghams test - CAM K 163 and very high anti - lysogangliosides. Not in exacerbation at time of draw. I would not have known about number two unless we did the testing. He was getting As and Bs at school, his brain was compensating in other ways... but huge anxiety about being asked to perform things at any moment that he could not do..and everyone else took for granted. Anxiety took the form of not seeming to care about work, carelessness, forgetting to turn things in, rushing though things. We though part of issue was that he is very intelligent, and was bored, as well as frustrated with doing things like showing work - why show work when he could do it all in his head and write down one answer? - but the case was he COULD NOT perform the simple tasked he was asked to do daily. The pychologist explained that this attitude is a common way of showing anxiety, which I did not know, but once he said it I could see it. Pretty much gone now after ivig. Taking pride in his work again. Did you have cunninghams tests done phasmid? I know your son has compulsions too - he has trich right? I'm glad you have a doctor that has found this and is treating aggressively. I think that Myco P is mentioned in some articles by Swedo, I have to do some research, I'm not really sure of that, but will let you know if I turn anything up. Good luck with your IVIG - it was really great for my son. We did 1.5 dose., just once.

Thanks SF MOM - great article!

Thank you for all the replies. SFmom -I did speak with the LLMD office in Redwood city, but that was before I even suspected Lyme, and the wait was months, so I opted to use the new pandas doc in petaluma to run most recent tests because it would be faster. We'll see what he has to say and I will try to see how much Lyme experience he has. I know he mentioned it to me, and I think he has family members that have had it...but I didn't think we were dealing with it so I wan't too concerned about it..I ran Lyme the tests to rule it out, to make sure we covered all the bases. we had no reason other than pandas to test for it. we did test CD3 but it was normal. Hopefully this is a good thing. At least it is another piece of the puzzle. He's been doing well since ivig, and hopefully getting the right antibiotics will get him the rest of the way there. Thanks again!

I'm just visiting from the pandas board (I hope). We got back Igenex test results for my son. Did whole panel and co-infections. I am going to discuss with the doctor on Wednesday, but thought I would throw it out to all of you to see your thoughts so I am prepared for that conversation. IGM western Blot, he had one 39+ and 41 IND. all others negative.(only needs these two bands positive to be positive...but suggests exposure to B. burgdorferi...which he comes up negative for. IgG western Blot (31) IND and 41 ++ A phagocytophilim - 1:20 (igm) lowest possible positive titer A phagocytophilim - negative (igg ) B burgdorferi Negative (igg and igm) B. microti - Negative (igg and igm) babesia fish - negative B henselae negative (igg and igm) e chaffeeensis negative (igg and igm) AND my pitands son also cam back very high for mycolplasma pneumonaie...he's been on full does azithromycin for over a year and had ivig (worked great...but still not 100%) 4 months ago. his IgG was 2430...but IgM was negative..not sure what that means either. Any thoughts appreciated!

I just got back some tests we ran as a follow up to DS's HDivig - 14 weeks post. Mycoplasma pneumoniae....2430 (negative is under 100) This is the IgG number, the igM was negative. So, I don't know what that means if IgG is positive and IgM is negative. He also has not been sick in a very long time (hate to write that out loud, knock on wood, because...he is PITAND) He's been on full strength azithromycin for over a year. I try to reduce to prophylactic does every now and a again, but I swear he does a little bit better on the higher dose, so for the most part he's been getting 500mg/day. He also came up positive on a couple Lyme bands, I don't know how to interpret those results, will post that on Lyme board. They aren't nearly as concerning as that 2430 at the moment. Since my son never had positive titers or strep infection, this could be the smoking gun we've been looking for. 2430 seems pretty positive for something I didn't think he could possibly be in this category since azith is a treatment for this, and he's been on full strength azith for over a year! Anyone else out there with this?

There are many other kinds of anti-neuronals. She only tests for 4. Doesn't mean that others aren't elevated...but she's the one to ask!

looks like they are all in normal range. two are at low end of normal range, which I've not seen before - I have only heard of pandas kids have too much of these anti-neuronal antibodies. I don't think too little is the issue, but you could ask if low levels on Anti-Tubulin and Anti-lyso mean anything. I'm wondering if your child was in exacerbation, or at baseline when you did the blood draw? and if he has any already identified infection links (pitand or strep or lyme or myco P)? or if is immuno deficient in any way? We took my son's at baseline. He was only high in one anti-neuronal - anti-lysoganglioside. But Cam K of 163...I've always wondering if he would have been off the charts in all the antineuronals if we did it during an exacerbation, or if only his Cam K and antilysoganglisode would have gone up, and rest would have stayed same. Anybody out there have results for Cam K tests in/out of exacerbation (or before and after treatment) and seen if more anti-neuronals are involved, or if only the specific ones your child had when no exacerbating changed?

I can only speak from personal experience, he may be following up with a certain group. I would not call what he asked of us follow up because it relies on the patient to submit the follow up. And he doen't ask them if they had lyme, or survey them. It is self prompted. At least mine was. He asked us to follow up at 2 weeks, (3 months?,) and a year --- I'm not even sure because I lost the paper he gave us at the ivig with what he asked for. He wanted a description of whats going on, and a drawing done by your child of a picture of their house with name and address written next to it. to use as comparison. I think he wanted that submitted at 3 mos. and one year mark. Its also somewhat buried in other important information on the sheet as I recall - like list and doesing of recommended foods, supplements, what do to is migrain after ivig fluids..etc.. He may have another smaller group that he contacts and surveys and tracks more carefully that he is using. I hope so . since, I am now using a local doctor for lyme and myco P testing, antibiotics and because, well, I've lost that piece of paper...we haven't sent anything. I kinda forgot about it until this tread. Also, I sent him some antibiotic questions when my sone got a cold at 7 weeks post ivig, and I didn't get a response, so I think I kinda felt he was jsut too busy, and if he's too busy for that, probably isn't doing anything with the write up on my son...so it got put in the very low priory stack...so I'd be int he group that invalidates his numbers because we stopped getting back to him! Perhaps he started this when he was following that group and now just hands the paper out to everyone. Who knows.

I've always wondered why this one OCD habit has its own name and is considered different...isn't it all OCD? My child has two OCD things - that don't fall on any chart, don't have any name - but they are OCD. Ivig has helped us tremendously in many ways. I spent along time trying to find "looking into the sun"...my child's compulsion...and someone else out there doing exactly the same thing. After a year I found one other kid that did this at one time in his illness. Personally don't think it matters if they are using profanity, praying obsessively, washing their hands, or pulling their hair out. If he has strep connection, illness link, any immunological defeciencies - or high cunninghams test...I'd say its worth doing. It is effecting his life. And I too, thought my child was "minor" relative to some of the stories I'd heard....but for some reason it seems worse when we hear if from someone else sometimes, because we have gotten used to it. We have adjusted our lives, and our expectaions for a "good day" or week or month. If you comes back normal on all step, myco, lyme, immunity and cunninghams test...that is a harder question. We didn't have anything but the cunninghams test, but don't have lyme tests back. I in the camp that this is autoimmune disease with several triggers - so the cunninghams test is what I'd spend my money on if your kid has had it for years. Best of luck with your decision...I know I nearly gave myself a nervous breakdown trying to decide. In the end, it was no big deal, and wished I had done it earlier. Now debating another ..to see if we can go from 85% to 100% !