kim

mylittleangle, I don't think one parent having 1 disorder is enough info to go on. I guess I would say to keep looking for a bigger picture. Many parents have psoriasis and their kids don't have tics. You could probably guess though, that I'm thinking psoriasis could be significant in some cases. Have you visited this site yet? http://www.pandasnetwork.org/ There is a table with family history info. http://www.pandasnetwork.org/fhtable.html Could I ask if your husband has any sign of connective tissue disease associated with the psoriasis (fingernail involvement, psoriasis arthritis, anything?).

I'm really glad Caryn and Wendy had such a useful discussion here. Again, the ability to discuss without hostile disagreement is so nice. I'm wondering if anyone has any thoughts to clarify why an elevation in CamK activity alone is really significant in diagnosing pure PANDAS (maybe that is not anyone's position)? When I say "pure," I mean a specific group of individuals that would benefit from treatments like IVIG, plasma exchange or long term antibiotics (and I'm not denying those subsets exist!). My understanding is that CaMk activation seems to correlate with "neurons gone wild," in the PANDAS hypothesis because an antibody is binding to a ganglioside and triggering an influx of intercellular calcium which binds with calmodulin (a main receptor site for calcium within a neuron). I think I got that right? I think many things can trigger this calcium influx. Hormones, stress, etc. Doesn't the elevated CaMk have to be correlated to definitive presence of a particular antibody somehow, to truly give any real credibility to the acronym PANDAS? I really believe that this does exist and I realize that the type/ dosage of antibiotic makes a big difference. I know the typical strep markers (ASO & anti Dnase) are not always elevated and should not be used as a definitive way to rule out PANDAS. I guess I'm feeling like there are probably individuals who would not be helped by these treatments and they could still have elevated CaMk levels. Does that make sense? I agree with what has been stated before, it would be really interesting to see what CaMk levels look like in individuals with no suspected relationship to strep. Strep is known to be a triggering event, but viral infections are too, so where does that leave us? A position on the PANDAS forum that I thought was useful was that long term antibiotics can reduce at least one trigger (and I sure get that) but I wonder if long term antibiotics would further damage gut flora, which seems to be a real problem for some already, and interfere with the bodies capability to handle virus and absorbtion of nutrients, as Caryn suggested (the nutrient part). I would luv to see more data on CaMk from people on this forum who do not suspect strep to be a triggering event too.

So 1 1/2 years later, I return to my genetic notions and I bet anyone who suffered through it before will be really happy First off, I continue to be very interested in glucosamine or N acetyl glucosamine to be more exact, in treatment for autoimmune disorders. I think the article that I referenced in this thread talks specifically about it's usefulness for organ transplantation. On another note, I have had mild psoriasis since my late teens, early 20's. Annoying patch on my elbow has always been the worst of it (fairly mild case) with a small spot near hairline at neck. Last Dec. I scratched my elbow, got an infection and broke out in a horrendous full body rash. Dr. in ER, family physician and derm all said that the "rash" was infection triggered, but that's really all they said. Immediately went to a psoriasis web group to start learning all that I could about Psoriasis. I found out that there is a lot of speculation regarding strep, triggering psoriasis (never knew that). Pubmed is loaded with articles. Also, a fairly strong association with celiac. A dermatologist Calif. has an interesting site about the use of curcumin/turmeric for psoriasis. She refers to it as a genetic defect on chromosome 6. 6p21 has been frequently associated with psoriasis. Last night I found this new reseach regarding TS. bolding mine http://archneur.ama-assn.org/cgi/content/s...6/10/1267?rss=1 Conclusion Variants in BTBD9 that predispose to restless legs syndrome and periodic limb movements during sleep are also associated with TS, particularly TS without obsessive-compulsive disorder. [cis] So, I looked up the chromosome location http://www.ncbi.nlm.nih.gov/IEB/Research/A...man&l=BTBD9 BTBD9 Gene Card Map: This gene BTBD9 maps on chromosome 6, at 6p21 according to Entrez Gene. Then, I looked at this from wiki http://en.wikipedia.org/wiki/HLA-DQ HLA-DQ (DQ) is a cell surface receptor type protein found on antigen presenting cells. DQ is an αβ heterodimer of the MHC Class II type. The α and β chains are encoded by HLA-DQA1 and HLA-DQB1, respectively. These two loci are adjacent to each other on chromosome 6p21.3. Both the α-chain and β-chain vary greatly. A person often produces two α-chain and two β-chain variants and thus 4 DQ isoforms. The DQ loci are in close genetic linkage to HLA-DR but less closely linked to HLA-DP, HLA-A, HLA-B and HLA-C. DQ functions on antigen presenting cells, and is an antigen presenting molecule. Different DQ isoforms can bind to and present different antigens to T-cells. In this process T-cells are stimulated to grow and can signal B-cells to produce antibodies. DQ functions in recognizing and presenting foreign antigens (proteins derived from potential pathogens). But DQ is also involved in recognizing common self-antigens and presenting those antigens to the immune system in order to develop tolerance from a very young age. When tolerance to self proteins is lost, DQ may become involved in autoimmune disease. Two autoimmune diseases in which HLA-DQ is involved are coeliac disease and diabetes mellitus type 1. DQ is one of several antigens involved in rejection of organ transplants. Pretty interesting hau?

Peglem. I posted the abstract to that study a while ago and found it pretty interesting at that time too! You are bolding everything that I found interesting reading through that too. It was great that you found the whole study! Melanie should take a copy of this to her appt.

buster are you referring to the "unmasking" by the antibody or the composition of the ganglioside being vulnerable to the antibody due to prior composition?

From this thread http://www.latitudes.org/forums/index.php?...l=Cam+Kinase+II

Remember the study recently about N acetyl cysteine reducing the incidence of OCD, in what 60%? If you go back and look at the relationship of cysteine/methionine, the CBS mutation, MTHFR and others, well some things are making a little more sense! Very interesting about the length of time you nursed! Also, the "heart thread" there is some info there about cardiac changes when methionine is oxidized by elevated CamKin and a study about BEETS, Cabbage, and Garlic (Msra) reversing the effect! So much for working on halloween costumes today!

bronksmom, There is So much going on in this house today, I can't concentrate, but "Oh my goodness", it looks like they are looking at METHIONINE Under materials and methods look at reference #20 http://www.ncbi.nlm.nih.gov/pubmed/7189777 Effects of methionine supplementation on the incidence of dietary fat induced myocardial lesions in the rat.

Pretty interesting! Just found this this morning. At a glance "Lorenzo's oil" story comes to mind. http://journals.lww.com/shockjournal/Fullt...mmatory.18.aspx Dietary Ganglioside Inhibits Acute Inflammatory Signals in Intestinal Mucosa and Blood Induced By Systemic Inflammation of Escherichia Coli Lipopolysaccharide

Meg'smom, I admire you for educating yourself, talking with a Dr. that you trust knows something and then going with your gut. That is all any of us can do. Since this conversation came up, I do want to share something that is really bugging me. Our school system has several confirmed cases of H1N1. Classes that normally have 25 or so students have been having 6 or 8 in attendence. Teacher's with confirmed cases etc. NO ONE will say the word H1N1. Our local news is reporting "flu like illness" is responsible for closing of area schools. WHY???? I do have a guess here. I think they know that there are too many people who won't take the vaccine when it becomes widely available. This makes me so angry. They send home notes about strep in a classroom (or they used too) lice, etc. WHY NOT CONFIRMED H1N1? While I respect everyone's privacy, there is no reason that I can think of that parents wouldn't be informed that there were confirmed cases, with no names mentioned. Most people know who they are anyway. It's not like families are hiding it, but the schools and the news are. Now another thing, and I'm really not up on this one, but I was reading a study where they were talking about the adult Pneumonia vaccine being given every 10 years in most cases. The part that surprised me was that they said when given closer together than that there were more adverse events and it was presumed because the antibody level was still high for some strains. I have also read and I think posted somewhere, that that was found to be the case for the tetanus vaccine too. Higher adverse events with subsequent injections. Now what happens when you vaccinate a child who recently recovered from H1N1? Where is the safety data on giving this thing AFTER there is widespread transmission (remember the vast majority have not had confirmation)? And for the luv of children, WHY if special (medical) needs kids are the ones who need protection most, isn't there ever a study done on them, PRIOR TO WIDESPREAD USE? Children with allergies, asthma, maybe psoriasis or excema, type 1 diabetes, or some combo of. WHY isn't it ever been done? This is a story that I read yesterday, which mentioned deaths attributed to H1N1 in special needs children, and a 15 year old special needs young man who presumably had a bad reaction to the vaccine, BUT he was coming down with the flu when he got vaccinated apparently. I'm not sure if his vaccine contained an adjuvant or not, but wouldn't surprise me if it did. http://www.belfasttelegraph.co.uk/news/loc...b-14543347.html Boy rushed to hospital after swine flu jab

I think there is a study out there showing where Tflu shortened the duration of flu symptoms by 1/2 a day. Also, they are supposedly refraining from using it, to keep the virus from becoming resistant (some docs, but some give it at first sign of sniffle supposedly). I'm not sure it had block buster capabilities to begin with. You can probably find a lot of that info fairly quickly. If you persue it, please share what you find.

When someone sees... say a rheumatologist, is this the type of test that would be classified as ANA, or is it different. Do you have to breach a barrier to get at gangliosides? Does anyone know?

EAmom, She does know the difference. She always says that she cleared strep in her kids with olive leaf extract. She usually gives very short answers, but she responds to many people. When you said "she doesn't really clarify the difference for the guy that posted either, which makes me wonder if they are really all one and the same in her mind." I think she does think the "effect" is one and the same, so didn't bother to clarify. I think she has 3 or 4 kids and like you pointed out, she has studies mind boggling pathways. You can understand why short answers would be all she would have time for!

What an awesome thing to share. When kids are having that frustrating behavior where they're saying something over and over that doesn't make sense, now parents can understand that they can't find the word or words that they need. How many times have we all done that (well ok, i do it now more than i used to). You know what you want to say, but can't come up with the word? How great that Pixie knew to write the word down. That might be a great tool for parents. When the child isn't making sense, have them write or draw something that they are trying to convey. I sure would say that something positive is happening for her to do that! how frustrating that must be for her. I'd feel like trashing a room too, if i was telling someone I was thirsty, and they kept pointing to food.

pixiesmommy, Have you ever heard of/searched "familial periodic fever syndrome." I'm not sure that there is anything helpful there, but you might want to read up and see if there are any new clues.

EAMom, Dana has been around a while. Notice she doesn't call strep a virus. She has a web site here http://www.danasview.net/sitemap.htm. She has learned and tried all kinds of things with her kids, mostly with no testing or Drs. Some of her info seemed kind of "out there" like ear wax and cradle cap being yeast related, then all of a sudden, I'd run into something that wouldd support that, and think, wow she's good! The idea that kids improve with fever has been around a while too. I think there is even some research somewhere about bursts of development after routine childhood illness.

Citygirl, These are just random thoughts here. The only real significance would be if you see an increase in neurological problems, if we make the leap to these same antibodies affecting anything in the nervous system. The fact that your daughter has the virus in itself, really doesn't mean anything. Do keep an eye out for any cardiac symptoms, if you feel autoimmune issues are involved tho. The first study only suggests that Methyl mercury has "been shown to change Coxsackie virus type B3 (CB3) myocarditis in a direction compatible with the development of chronic disease." (cis) So if you have a problem with heavy metal excreation/sulfur/methyl pathways, this would be a condition that I would pay closer attention to, than a person without detox problems. The nutritional pathways "yes," I do believe that these and other deficiencies play a part in any disease state gone haywire.

Kelly, did you ever get a chance to read that article? If you can hang in there with me, I want to show you something. Here is another article regarding the same thing. http://www.medicalnewstoday.com/articles/106098.php Study Identifies New Mechanism Linking Activation Of Key Heart Enzyme And Oxidative Stress and Since my irregular heartbeat stopped, wondering if you might be willing to be part of a little experiment? (said in my best count dracula type of voice) It only involves food btw!

Citygirl, I know you have been down the metal detox road and are familiar with sulfur issues. I wanted to leave these for you to read too. Pretty interesting. http://www.ncbi.nlm.nih.gov/pubmed/11314973 Trace element distribution in heart tissue sections studied by nuclear microscopy is changed in Coxsackie virus B3 myocarditis in methyl mercury-exposed mice. http://www.ncbi.nlm.nih.gov/pubmed/9152508...ogdbfrom=pubmed Interacting nutritional and infectious etiologies of Keshan disease. Insights from coxsackie virus B-induced myocarditis in mice deficient in selenium or vitamin E. Lisa, Did your son have any symptom increase with the virus? Edit...opps, I see now that you said "two years prior"

Citygirl, There is some info on the PANDAS forum that I wanted you to see. Not sure what it means as I just sort of stumbled on it, but did want you to see it particularly since there can be heart involvement with this antibody apparently, IF there is any autoimmune issues involved with your kids movement disorder. Have you seen any increase in symptoms with the illness? http://www.latitudes.org/forums/index.php?showtopic=5724

Citygirl, I just went to the Cunningham test result thread to try to find the answer to one of the endless questions that run through my head, and saw this post of yours. Check out the info here.

http://www.aruplab.com/guides/ug/tests/0051033.jsp Ganglioside (asialo-GM1, GM1, GM2, GD1a, GD1b, & GQ1b) Antibody, IgG/IgM Just wondering if anyone has ever tried to get a reg. Dr. to order this? Are none of the immun. Drs. suggesting this?

Faith, I'm beginning to think that it was not a good idea to separate the TS and PANDAS forum. Personally, i think "subsets" of both disorders will still be identified, but a lot to be learned from the autoimmune standpoint for people who think TS and PANDAS don't have a lot in common in some (many?) instances. I'm glad you have at least a partial answer. Don't know if you saw the thread where I posted the info from one of Cunningham's studies about "epitopes" from strep and enteroviruses? I suspect as time goes on there may well be antibodies involved in viral infection identified in "PANDAS" kids as well. We already have posts where viral infections cause exacerbations. bolding mine http://www.pnas.org/content/89/4/1320.abstract Kelly Do you have any more info on this remark?

Wondering if anyone thinks that their child has had this virus? The sore throat, and pink eye symptoms were what originally caught my attention, but one of the hallmark symptoms of one strain looks like blisters on the palms, soles of feet and mouth. This article mentions Hemorrhagic conjunctivitis, but other articles just say pink eye. Some reseach by M Cunningham titled "Cytotoxic and viral neutralizing antibodies crossreact with streptococcal M protein, enteroviruses, and human cardiac myosin" originally led me to this. http://www.pnas.org/content/89/4/1320.abstract excerpt from that abstract http://kidshealth.org/parent/infections/ba.../coxsackie.html In most cases, coxsackieviruses cause mild flu-like symptoms and go away without treatment. But in some cases, they can lead to more serious infections. Signs and Symptoms Coxsackievirus can produce a wide variety of symptoms. About half of all kids infected with coxsackievirus have no symptoms. Others suddenly develop high fever, headache, and muscle aches, and some also develop a sore throat, abdominal discomfort, or nausea. A child with a coxsackievirus infection may simply feel hot but have no other symptoms. In most kids, the fever lasts about 3 days, then disappears. Coxsackieviruses can also cause several different symptoms that affect different body parts, including: Hand, foot, and mouth disease, a type of coxsackievirus syndrome, causes painful red blisters in the throat and on the tongue, gums, hard palate, inside of the cheeks, and the palms of hands and soles of the feet. Herpangina, an infection of the throat which causes red-ringed blisters and ulcers on the tonsils and soft palate, the fleshy back portion of the roof of the mouth. Hemorrhagic conjunctivitis, an infection that affects the whites of the eyes. Hemorrhagic conjunctivitis usually begins as eye pain, followed quickly by red, watery eyes with swelling, light sensitivity, and blurred vision.

Here is a pubmed abstract regarding the reseach reported by Demetriou excerpt http://www.ncbi.nlm.nih.gov/pubmed/1959464...Pubmed_RVDocSum