marilina

I will not escape from the subject, because this discussion is extremely interesting for me, but I have to respond briefly to Athena and say that my daughter since she was 13 years started the DAN protocol. after continuous and constant improvement remained a number of "trends": the tendency to react too much fast, with impulsiveness, and the tendency to "do fast" things ... examinations revealed that she had a good blance but serotonin tend a bit 'low. we have used and are using inositol, GABA, 5HTP, and other supplements to help with these "tendencies". examination of organic acids or Methabolic profile running by Data Doctors can assess, obtain the status of neurotransmitters. more than we did with some regularity in Paris a specific examination that show the levels of neurotransmitters. currently epinephrine, dopamine, serotonin are in balance. However the symptoms are what you know.... we have also examined the genetic with dr.Yasko, and it turned out that she has three mutations that lower serotonin levels. I can say that genetically she has this problem. and I think I have to work to support her serotonin levels. but not with SSRIs. she has CaM high, and antiD1 and D2 high. we have to work differently. (as always, sorry for my english)

they talk about Kawasaky desease but I've found this: http://www.childrensheartresearchguild.org...anspotlight.pdf "There also seems to be a genetic reason why the IVIG does not work for all patients. When the IVIG is given to a patient, it binds to receptor cells, turning the inflammatory cells either on or off. However, there may be an abnormal or mutated receptor in the patients who do not respond to the IVIG, therefore preventing the IVIG from properly binding to the receptor cells. Dr. Portman is studying polymorphisms in genes, which are changes in the genetic sequence, and also single nucleotide polymorphisms - mutations at a single point.Clinical trials are currently underway to treat Kawasaki Disease using Etanercept (commonly known as Enbrel), a drug which is typically used in adults and children two years of age and older for inflammatory disease such as rheumatoid arthritis and psoriasis. In pilot trials combining the IVIG with the Enbrel, recurrence of inflammation was nonexistent. When giving patients only the IVIG, inflammation reoccurs in about 25% of patients. However, more data needs to be collected through a large multi-center trial."

......................... I know SSRI action is blocking the reuptake of serotonin that is available, they can't increase directly the amount of it. but I can be wrong.... that's why everything, supplements and food that can raise the serotonin levels can help I have to say we are doing the Yasko protocol, so certain amyno, certain supplements we have to avoid due to her genetics. for example we have to avoid taurine, be careful to take control abut taurine levels and add it only if it is very low....and so on finally, in the neurotrasmitters levels exam, even in organic acids profile, or in MAP TEST, ALL done in the urine, mydaughter show balance between neurotransmitters, so I think that these results do not reflect the real state of dopamine in brain, due to the presence of autoantibodies

hello melanie I am very sorry that Lauren is experiencing this problem with eyes. the doctors think it is a transitory effect of IVIG?

is there a "why" of the fact that doctors/NPIs insist on prescribing SSRIs when the problem is dopamine? going to intervene on the balance of these two neurotransmitters acting on what is not the first cause of issues (serotonin)?what kind of science is there, if any is there, behind this prescribe SSRIs in the case of PANDAS? I would think that is the only thing they think they know how to manage, I speak of SSRIs . "think do know how to manage", do not know.

I've read this: Cunningham and Kirvan found 3 antibodies that interfered with neurotransmitters in the brain. These antibodies target a particular molecular sequence which happens to be a part of the Group A Beta Hemolytic cell wall structure. In neuro-blastoma cells Cam Kinase II activation regulates the amount of dopamine released. So what Cunningham was studying was the disregulation of dopamine due to the introduction of antibodies. so what I understand is that we talk about disregulation and amount of dopamine, not simply of interference. but I'm the last one that can explain something. what I want to say , next to Joan Pandas Mum, is that my daughter simply does not seem tired after an intense physical exercise as we do. In fact she does not sleep better after a day of physical exercise seems to have extreme endurance, and OCDs do not decrease in relation to the physical exercise she do (sorry for my english)

I've found this: Previous investigation into post-streptococcal autoimmune disorders has focused on M proteins, the protein sequences expressed on streptococcal cell walls. The M protein amino acid sequences are highly variable, and only certain M protein serotypes have been associated with post-streptococcal autoimmunity. It is proposed that M protein amino acid sequences share homology with host basal ganglia antigens, and that autoimmune induction involves a process of molecular mimicry. http://bjp.rcpsych.org/cgi/content/full/181/3/188

this 3d is everyday more interesting thanks kimballot I've never read this, have you any link to post?

I wonder about the same thing. My child used to be sick almost all the time when she was younger. After about age 9, she stopped getting typical symptoms- no more fevers, runny nose once in awhile, But that's when her PANDAS symptoms seemed to amp and stay amped. She was more episodic before then. Very low ASO, AntiDnase very low. She is immune deficient exactly! my English is what it is I am one of the newcomers on the forum,but I'm halted on the same question. My daughter is a copy of pedlem, except that after the 9 years of age, also at that age she experienced PANDAS (never diagnosed with) , her immune system has become hyper: so hyper as her pediatrician sayd that an unbalanced ratio between B and T cells he has seen only in AIDS patients(but they are immunodeficient!) ..... no one has done investigations. because his system is hyper, in addition to being re-educated by IVIG, in my opinion should be stripped of the high antibodies with plasmapheresis. but I'm just a mom. this is what I "feel". I swore to myself not to do anything against what I feel, after agreeing wing vaccination at 10 months (she never talked after DTP) now I find myself again at the mercy of the decisions of others without being able to say nor do anything, because something must be done. but what? what first and what next?

CaM = 136 anti-lysoganglioside = 320 anti-tubulin = 1000 anti D1 = 8000 anti D2 = 8000 anyone has had similar results + some explanation about it?

yes of course ,Trg girl most of us have Cam high and this tight us all togheter some have even antibodies levels elevated.....just searching what does it mean

http://www.antibodies-online.com/antibody/314926/anti-DRD1/ DRD1= Dopamine Receptors D1 DRD1, a Dopamine Receptor, mediates the effect of the neurotransmitter dopamine, an intermediate in the biosynthesis of noradrenaline and adrenaline. It is involved in the control of motor activity and cognitive memory. Downregulation of DRD1 leads to severe impairments in working memory and to locomotor hyperactivity, which are observed in diseases such as schizophrenia, Parkinson's disease, affective disorders, and attention deficit hyperactivity disorder. DRD1 enhances smooth muscle contraction and vasodilation in the heart. It also modulates sodium transport in the kidney and is involved in the pathogenesis of hypertension. Alternate Names: anti-DRD1 antibody, D antibody, DADR antibody, DRD1A antibody.

We are in the same situation. plus here in Italy there are NOT specialists in the treatment of PANDAS. Although the titles Cam are really "significant" and I hope they will become diagnostic for this disease, what has driven our NPI to act were the anti-D1 antibody that in my daughter are very high (8000) 136 of the CaM is important, but the presence of anti-D1 (8000)scared me and still is clear for everyone (even for doctors who do not know enough about PANDAS) that they should not be there. I think we should ask dr.Cunningham all together (not each on its own) to keep us updated on these titers ALSO ... a kind of guide of work in progress ... I'm searching a lot these days of some explanation of what these antibodies act. - They act ct as blockers of dopamine?(like drugs?) - They work by interfering with the signal. but what does it mean? - The dysregulation of release of dopamine how does interfere? - It also affects other receptors? (In my case the problem is D1. D2 also work badly as a result?) in Internet there are only explanations of 2 very different conditions, I would say,opposite: Parkinson's and schizophrenia. In the first case there is not enough dopamine in the second they assume there is too much. and then there are reports of how cocaine acts just on D1 and D2 receptors. What really happens in the heads of our children, I can not even imagine. in the worst moments her pupils are open wide, just as under the influence of drugs. I hope my NPI will explain me remarks that he made on phone when I told him that D1 antibodies were high: commented with a "damn": simply because the antibodies should not be there or because for him is really clear what means having an 'interference' like this?

My daughter is perfectly aware of what is happening, but also rationally realize that people can not understand that is not true that "she is no longer herself", but simply there is something in those moments that does not allow her to be able to have control over her actions. and the thing that hurts her the most are the expressions on the faces of the people.

Full Moon, Symptom increase?????? YES!!!!!!!!!!

gather and throw stones broken bits of leaves during the walks Close the doors of stores all these manias began early, when she was little, and was constantly ill as a child: otitis, sore throat ... But everything has got worse around nine years when appeared many compulsions: wear and take off shoes many times turn off and turn on the lights enter and exit through the door several times before leaving or returning home roll of candy on the pillow many, many times in an exact order, to consume them and many other rituals. is a year that have returned some of these .... and they reappeared suddenly, not gradually.

No, actually, the glutamate issue is with respect to OCD, plus I mispoke; it's not a "deficit" of glutamate, but rather a failure to modulate the amount of it overall in the brain. There was a study done at, I believe, Wayne State, in which a series of MRIs performed on OCD kids versus non-OCD kids revealed that OCD kids had higher levels of glutamate active in their brains, and the thought was that these higher levels attributed to an OCD person's greater challenge in "switching off" thoughts rather than perseverating on them and/or circling back to them over and over again. I saw the study referenced and the chief researcher interviewed on a "Dateline" episode about kids with OCD. Then, more recently, one of the other parents here introduced me to the fact that there is a trial currently going on involving a drug called riluzole that might help the modulation. Here are a couple of links I found on the topic: Glutamate-OCD Study "http://www.neuropharmacology.com/rilutek.htm ok then corresponds to what I have read. I therefore believe that even children without autism do well in this sense to control the levels of glutamate. avoid aspartate, momo sodium glutamate, reducing or eliminating foods such as tomatoes and peas

MomWithOCDSon you say "deficit of glutamate"...... I read a lot about glutamate as excitotoxin, and about the balance gaba / glutamate, very important for health. also found that children with autism have rather too much glutamate receptors ..... is there something to read about PANDAS-glutamate relation? thanks

thank you Vickie, it's very very interesting this post (as I'm waiting the kit to do the exam)

I think she does His fingers are red when that happens,she watch her fingers and touch them constantly

what she exactly says is : something akin to pain, a kind of burning the fingertips

some of your children have had problems like "finger burning" (hands) thank you all

hi Jewels the e-mail works!!!!Kathy has answered and monday they 'll send the kit!! Kathy-Alvarez@ouhsc.edu thank you so much dut!!!!!!!!!!!!!

to summarize. PANDAS may be related to: streptococcus, mycoplasma ...... I even heard herpes and Epstein Barr virus .... anything else? any pathogen agent can trigger the incorrect immune response I ask because since I do a panel at this point I'll do an immune comprehensive search

that's exactly the state of things here in italy scary? it is absolutely criminal we have to cure our sons alone and secretly