norcalmom

google jeavons syndrome. Maybe you can find some videos for it. My son had a compulse -tic( compulsion to too int the sun, or at bright lights, and it looked like a tic ) which is how I found out about this. DS doens't have it but, I remebered it when I saw your post. here is breif description from wikipedia: Eyelid myoclonia, not the absences, is the hallmark of Jeavons syndrome. Eyelid myoclonia consists of marked jerking of the eyelids often associated with jerky upwards deviation of the eyeballs and retropulsion of the head (eyelid myoclonia without absences). This may be associated with or followed by mild impairment ofconsciousness (eyelid myoclonia with absences). The seizures are brief (3–6 s), and occur mainly and immediately after closing of the eyes (eye closure) and consistently many times a day. All patients are photosensitive. I'd definately take him to a good neurologist - immediately, and consider taking him down to one or two supplement/antibiotics if you started them all at once. Then adding one at a time per week back in.

Doxy great for mycoP, probbaly the best antibiotic for it is you can tolerate it. Keep an eye on sun sensitivity. Most people become highly sun sensitive - where even a couple minutes in the the sun, even with sunscreen, will cause a tingling sensation and burning. I have taken my DS off it in the summer because he is fair, and plays baseball. . Keep up the probiotics! Researcher Garth Nicohlson says mycoP takes a minimum of 9 months to treat chronic mycoplasma, with high does Doxy (or Doryx - which is easier on the gut). His treatment looks like this -3 months on, and then 2 weeks off, then alternate 2 weeks off and 6 weeks on for remainder of the 9months. Good news is that the doxy works on some aspects of lyme as well. good luck. I hope you are onto something.

Did you have your child's Cam K II tested? It is a measure of an autoimmune reaction, not directly of infection, but it is raised during after and infection, and can continue to go up and stay raised after a known infection - an indication that the body's immune system has gone awry and it now attacking itself. I do know if can be slightly raised due to a bacterial infection ( strep) in NORMAL, non-pandas blood - but it does not go very high, and returns to normal after the infection resolves. PANDAS subjects, go very high and don't return to normal, even after the infection is cleared. I do not know if other infections have been tested in the normal population so that comparisons can be made. Cunningham has data, and I hope to see her publish these finding in the near future now that her lab is open. I would think she would be publishing some papers to support her lab's commercial endeavors and convince doctors that her tests are worthwhile. The inital papers had very small subject groups, and that was a big criticism for her tests. But she now has many year of data that can be published. My personal favorite theory on this is that reccurrant infections, of various types (some identified, some yet to be identified) and probably other factors, break down the tight junctions Blood Brain Barrier, similar to what happens 24 hourse after a stroke, allowing the immune system access to neuronal tissue and keep telling the body to make more and more of the auto-antibodies that are found in pandas blood. There is also the possibility that the key autoimmune reaction is that self is attacking the BBB, and flairs allow permeability in the BBB and thereby access to neuronal tissue. Similar to what is postulated in MS. That it is a disease of the BBB, not the brain per se.

Just read post by LLm on the CBS - and another gene mutation that can cause problems when Methylfolate introduced...hmmm, LLM do you happen to know what % of population ahs that one? I dunno if I want to wait for more testing to start the mFolate!

Thanks for all the good info. We got back results of a urine test - and it pretty much made me a believer. The only area out of whack in his results are the amino acids related to B-vitamin processing. Histidine was 1533 (271-993) Isoleucine 20 pt above hi of range, Leucin almost double hi for range, ditto for Methionine, Gluatmeic acid, Tyrosine, a-aminoadipic Acid, sarcosince, AND Tryptophan. And - Formiminoglutamic Acid (FIG lu) was elevated above normal levels as well. All point to lack of B vitamins... DS has been off EVERYTHING for over 2 months now. It started with a break from the antibiotics, and then coming off supplements to get testing done, and then there were a couple of tests he was suppossed to be fasting for, and other excuses...and now I can't wait to start him on - vitamins!!! Doc wants him to take Mythl Guard Plus - has B12, methyl Folate, B 6, B2 and TMG. As well as liposodal circummin, yucca extract, green tea extract, and some high dose D3. She doesn't seem to think we need to work up to the dose on the Mthyfolate (methyl guard), just dive right in, and I've read on-line that working up is recommended, and even doing the B-12 first to see if there is a bad reaction (over methlyation or methyl trapping). I know he doesn't have an issue with the B-12, because he's taken high does in a supplement called CORE before, so I'm not worried about that. Has anyone had a bad reaction when starting the Methylfolate, or any experience with Methly Guard? Thanks all!! I started the hi does D3 and the anti inflamatories a couple days ago (circummin, yucca and green tea) ..and I'm thinking of starting the Methyl Guard tomorrow. We are going on vacation next week, and I'd so LOVE to have him in an improved mood. Will it work that fast?

We finally got this test done, turns out DS has one copy of each mutation. I believe they call it heterozygous for both. Or compound heterozygous. Can anyone out there give me the 2000 ft overview of what this could possibly mean? DS had glutithione level checked years ago - it was fine at that time. I think compound heterozygous most related to homocystine levels, which he will be tested for soon, and that the heath issue with those most common were heart problems. I have a phone consult with the doc that ordered this test next week. What questions or tests should I be asking about? Ive read its is the "worst" combination to have, but I don't see any studies or data on that statement, or anything that says what % of the population has the different mutations...Anyone know of a site where I can find that? Thanks!

The doctor you asked about the IgG for Myco P is is WRONG. A negtaive IGM does not mean you don't have mycop P. It indicates that the infection is not new. MOST people that have MycoP recur, or when it becomes chronic, Stop making the IGM. IGM goes up at the beginning of the infection. The only way to know if it is active is to retest it in a several weeks (I'm not sure exactly but probably at least 4-6 weeks). to see if that IgG is going up or down. It is a COMMON misconception by virtually every doctor. I don't know why exactly, because if you read the literature on the tests from the test makers, it says if IGG is above range you should test again. I had 3 doctors that told me same as you - all of whom had to eat crow after I did my own research, and retested. My son's myco P. IGG went from 2450 - to 2980. After viewing results even the Stanford immunologist agreed he's been wrong and that we should treat him for active myco infection.

We also had a lot of bed wetting after IVIG. for about 8 days straight.

My son's birthday...how fortuitous!

DS has done several and loved it. But he does not get, or as far as I know have a major reaction with exposure to strep - so consider that your child will be living in a cabin with 5 other kids sharing one bathroom and supervised most likely at night by a counselor who's idea of cleaning is what you would expect of a 20 year old boy. We had notices of both strepand (whooping cough? - can't remember). in the camp AFTER camp was over of course - that camp was in cabins in the woods, and it was 2 weeks long. But it didn't seem to have any effect on the over all baseline with DS at that time (this was a few years ago). Last year he came back from a different camp and was depressed for several days. His phych issues are focused on family members - and he was crying and had regression for a couple days because all the fun was over, "nothing in life to look forward to", and he had to be with me (not kidding - I'm his trigger for rage/ocd by swallowing anything- including saliva - try to talk for more than a minute without swallowing!) We obviously did it despite the risks, and the first time I was pretty freaked - with lots of communications with the nurse at the camp and the counselor he had living in his cabin. I think also that now that he is 14, the sickness exposure is a lot less. Don't tend to see much strep or other viruses that littler kids get, and better hygiene too. good luck with your decision. Consider having some sort of a re-entry plan, I did not, and that is why DS was depressed when he came home. This made me sad bcs I missed him - while he was having an OCD and rage-free time of his life!

Cunningham has been dragging her feet- she has all the answers to these questions. At the last conference she said she had "several papers in her briefcase" about the results she found in her study (the "study" in which anyone that ever had CAM K / cunningham tests done - thousands of patients) indicating that she would be publishing at any minute...this in answer to my very question during the Q and A- what are you doing with all that data...we need it!! That meeting was in Irvine 6(?) months ago...and that study closed over a year ago! What the heck is taking so long? from what I'v heard - the numbers have been run and correlated. Maybe she is waiting for the opening of her lab. On the abstract referenced above - my suspicion is that they have created a new subgroup of pandas (but they don't call it pandas)- that perhaps this is what we consider our kids to be- the "real" pandas - and they call it encephalitis. It may be a matter os semantics. I don't think we know enough about the D1 and D2 - I know one of my son't went up after IVIG - when cam K came down, symptoms were nearly gone. I'm sure that like everything these can fluctuate., maybe even daily, and we're a long way off from anyone doing a study on that. My understand is that Cam K - is the most reliable measure of this kind of activitiy- it indicates levels of auto-antibodies of several kinds, not just the 4autoantibodies that Cunningham choose to look at (there are alot more, she choose 4 most like suspects, but has not ruled out there could be others). comments on the D3 /MS - I didn't say it caused it (did I?)...but there is some sort of correlation, based upon a theory that you don't find MS near the equator. There are several really good studies on D3 and MS as a treatment, as well as dramatically improving results of some of the treatments when done together. Two friends with MS were told immediately to start fairly high does D3 by MS experts (and they were throughly vetted for Lyme - that is something most MS patients get a really good going over on) .

EAMOM -Exactly! - and Tanya Murphy is on the paper, - I know she knows all the cunningham data. Makes me wonder if they are redefining a group of pandas kids as "basal ganglia encephalitis" - exactly how are you suppossed to see basal ganglia encephalitis ? My son also had high D2 - so according to these docs more likely to have BGE (Hey, I like the acronyn - much better than PANDAS!) but I'm thinking its all a matter of semantics. Can't tell without reading the whole paper.

When I see the word lesion - I think MS. And I know at every conference MS is talked about, and to me, very similar to pandas because they know there is a breach of the BBB. Its one of the reasons we take D3 - its the one treatment that is pretty overwhelmingly related to MS. to the point were MS is almost non-existent near the equator. Thank you for post - and please keep us updated on your treatments. I'm confused about the paper that was posted. It says: Twelve of 17 children (aged 0.4–15 years, nine males) with basal ganglia encephalitis had elevated immunoglobulin G to extracellular dopamine-2 receptor, compared with 0/67 controls he 12 dopamine-2 receptor antibody-positive patients with encephalitis had movement disorders characterized by parkinsonism, dystonia and chorea. lesions localized to the basal ganglia in 50% of THOSE patients. Elevated dopamine-2 receptor immunoglobulin G was also found in 10/30 patients with Sydenham’s chorea, 4/44 patients with Tourette’s syndrome. No dopamine-1 receptor immunoglobulin G was detected in any disease 0/22 patients with paediatric autoimmune neuropsychiatric disorders associated with streptococcal infection I wish I could read the whole paper. Looks like it is saying that if you have a SEVERE pandas case, and take blood test for anti-dopamine 2 antibodies , and they are high - you most probably have encephalitis, (or a small chance of haing Syndenhams chorea or tourettes...) BUT NOT PANDAS - you have "graduated" from pandas to encephalitis - and need to be evaluated for that??

Love the TED talk - thanks for posting. Saw a presentation by Mady Honing last year on Autism. She had different theory - was testing it in mice. She was able to give mice "autism" by exposing them to a virus (it was a basic virus - like the common cold ) at a very specific point (like between day 8 and 13) in gestation. But the kicker was - if the virus was treated - with simple antiinflamatories - the baby mice were not autistic. There are so many factors to consider. I'm not sure we'll ever have an answer to why, but hope that we can find treatment, and perhaps some ways to prevent it.

This labs should be open for testing in a few weeks - they may be able to help you figure out it pandas is the right path. Its so hard when they are that little. http://www.moleculera.com

I always use 2-3 days of Advil every 4-6 hours to get through the bad days. It may not pul you out of full on exacerbation, but if may take the edge off until things start to swing in a different direction, or the die-off fromt he antibiotics has passed.

There is a test called " Intestinal Permeability Test" - it was on Dr Oz last week. You drink a "sugar water" with two different size sugar molecules - and if the larger ones penetrate your gut and get into your urine - they show up in your urine. It was presented by a integrative gastroenterologist. The first part of the show was a bout a mom with son that had RA, and although she used both traditional treatment and diet - she says HER gut says it was the diet that basically cured him. It was a great show. The mom was/is an ivestigative reporter, and she started with the standard treatments, and decided to wait to increase he DS methyltrexate does until she did a full 6 weeks of the diet (agains docs order - who wanted to increase does bcs things were not improving after 4 weeks) - she said on 6 weeks to the day - he got out of bed and said his knees didn't hurt (for 1st time in months)..and bounded off to play with his brother. The mom had a great quote - " Desperation has a way of opening your mind".

A number of probiotics add SAcch B to them - because it combats C Diff ( esspecially helpful for kids on long term antibiotics) . DS came back very high in this area - but is simply because his probiotics has it as an additive. Check the label to see if its in there before treating anything.

I didn't read the whole thread in detail, so it may have been discussed already - but many find Advil for 3 days every 4-6 hours, very hopeful. Treat it like a fever.. And might want to start with a bit higher does to start. And anti-inflamatory foods for a few days. If your child had pneumonia, you should keep track of her mycoplasma IgG. Do you know what type/strain of pneumonia she had? Doctors will tell you that if the IgM is negative, that she doesn't have it - that is incorrect. The IgG has to go down - if it is in the positive range, you need to take more than one blood test to see which way the titer is moving. I think you were the person that also asked about IVIG ? DS has had 2 IVIGs. They were TREMENDOUSLY helpful to him. He never returned to the state he was in prior to the first one. So - it didn't "cure" him but it treated him - while we work o the cure. My son has chronic mycpplasma - which we didn't find until after the second IVIG (he had no "typical" pneumonia symptoms, so we never checked ) - and he had a climbing IgG for mycoplasma pneumonia while on full does Azithromycin for 2 years. So, he is highly functional, but still ahs one OCD thing that is pretty bad. But - he rarely has any of the other symptoms anymore (the list was LONG) - when he does, he can usually identify that he is felling "pandas-y" and I give advil and watch his diet for a few days. But I do have to say that prior to the IVIG, I don't think the advil would have done much, but I dunno because we didn't know about the advil back then. hope the storm passes soon..

Yes - you can get myco more than once. But, your child probably has "chronic" mycoplasma - and its systemic. That's where it differs from "regular" mycoplasma - the walking pneumonia. My child had it - and has NO cold, cough, or lung symptoms. It was also what was found to be the cause of "Gulf War Syndrome" if you remeber that - which had a host of neuro-phych symtoms and weakness and achiness associated with it. There are different strains and different theories - but Dedee is right - find an expert . A doctor that has never treated it will follow the protocol for "regular" pneumonia. We see an LLMD for it because it is a co-infection of Lyme disease, so they are used to treating it. Weather or not you child has Lyme, the LLMDs know how to dx, treat it and they are experts in antibiotics. And you will most likely be on high does of Doxycycline to get rid of it - for 9 months. Good luck!

I'd absolutely treat with advil/ibuprophin. You also don't know for sure, since its cold and flu season, if he is flairing from the IVIG (probably) or he's coming down with something. Good luck - we saw some ups and down for about 4 weeks post IVIG..And DS wet his bed for about 2 weeks straight, and previously he would only have a couple wet night when he was about to exacerbate. But the post IVIG - was its own weird thing.

yes - it was fabulous. He's not all better - but he has never reurned to that pre-IVIG state. Exacerbations are shorter (and pretty fare and few between now). We did two - 9 months apart, when I was his "baseline sliding backwards again. He's stable, but not 100%, Highly functional, no one would know he has anything wrong (outside this house anyway). We found chronic mycoP, and have been treating for it for several months, and it takes time. I'd like to get another IVIG sometime soon - it not only made pandas stuff better, his immune health improved and we saw very little in way of illness in couple months following it.

Chronic mycoP usually take months of doxycycline or minocycline to get rid of. (sorry to be bearer of bad news). And, I don't know for those induvidual that have it, once gone how easilty they can get it again. Its kinda everywhere...most people get it and recover without antibiotics. So additional immune supoort (in the form of what is the question- the usual is what we do, Vit d, fish oil, multis, occasionally some other immune support sups). So you don't become chronic next time you are exposed. Good luck. BTW - your IGM can go down, and IgG stay hi or go higher - that means you still have an active infection. You should retest until you see your IgG going down. But, with out question, IgM means still active.

I didn't get me child vaccinated, but if I did, I'd try to get the mercury free version. If your child has any issues with their glutithione system or any deficiencies in zinc or other minerals, it makes sense to avoid mercury. http://www.newsmaxhealth.com/headline_health/Mercury_Flu_Shots/2012/10/05/478626.html

I finally listened to the interview, not the lecture - it is the second picture on the page, you have to scroll dowm to it - it is very, very interesting. I'm probably going to try to get this guys test done for my son. Weather or not you think mercury may have a part in anything going on with your child, listening to the interview is worthwhile - especially the second half that talks about "detox" - and the glutithione system - and precursors to making glutithione, and what else is needed to enable those precursors to work. Why its important..etc This researcher was an organic farmer who had to go back to school and change carriers for feed his family. His area of research is mercury..this guy knows his stuff. He used what he knew about the soil, water, mercury itself, and studied in humans for 12 years before opening a lab for accurate testing. The first part of the interview talks about the types of mercury, the biggest risk factors for our population (amalgams and vaccines), how the different tests measure different types, and why no one test (blood, hair or urine) will be able to tell you if you have an issue with mercury. Also, heavy metals will build up - if the glutithione system breaks down. And minute amounts of mercury that is not able to clear from you system will bind with key components (amino acids, or enzymes...can't remember) that enable your body to use zinc, copper and other useful metals. Mercury is like a billion times more attractive. So, you body becomes deficient in these. He talks about metabolic syndrome, gene expression, and other things....I am going to listen again and take notes. I know my child is somewhat anemic, although he has an iron rich diet, and he has come up short on occasion for zinc on blood tests as well. ... Contrary to popular belief - your body will clear mercury without harsh chelators, as long as the glutithione system is working property. It takes a LONG time to detox and fix this system. A year or so. Alot of this happens in the gut - as much of the immune system resides there. Key elements of detox program and common supplements I see posted as topics on the board often. Whey protein, garlic oil, vitamin C, chorella...and there are other options. You need to combine 2 or 3 of the things to get it to work. I need to research some more about specifics - they mention a whole bunch of options. The key one being Whey (uless you use a liposodal (sp?) glutithione ). Whey is the key precursor, then you add in a couple more things to make sure the Whey can do its job..this is where there are lots of options. I think I may personally do this - as I had a MASSIVE amount of amalgams removed several years ago, all at the same time, and within a few weeks developed an autoimmune condition. It is "gone" now, and it was cited that my condition (lichen plans) has 3 causes in 50% of the cases - 1) Hepatis C 2) Lupus 3) exposue to amalgams. I got tested for the first 2 to make sure I didn't have a more severe underlying condition. In 50% of the cases they didn't know the trigger. Mine was a somewhat mild case, but lasted for about 3 years. Many people never recover from it, I was lucky.