PANDAS_Denmark

Hi Jewels - I am sure Beth Maloney (info@savingsammy.net) would be happy to sent you cards, if you e-mail her ! PANDAS_Denmark

Hi abbe - Just wanted to let you know, that some of the parents (and Dr. Trifiletti) on the PANDASforum are looking into mycoplasma as a PANDAStrigger PANDAS_Denmark

Hi Laura - I´d like to make a donation to the "think tank", a unique opportunity in the effort to help our children, and I am sure many other parents would like to contribute too. Larger and smaller amounts - Would it be possible to make a Facebook-Cause-page, during which the donations could be given ? As far as I know these Facebook-Cause-pages gives the opportunity to pay via Paypal - so quick and easy, that it allmost doesn´t "hurt" (untill the end of the month :-) ). If not possible, please contact/PM me - Thank you for all your effort ! PANDAS_Denmark

Hi - So sorry to hear, that your son (and you) are having such a hard time ! My 9year old (PANDAS)son has this breathing tic/compulsion from time to time. My son has had very good results with "replacing" this tics/compulsion with another tic/compulsion, that is easier to hide and/or not so interfering with every day life. For example : Clenching the fist, moving the toes ... As far as his friends concerns, my son has had good results with explaing the friends, that a tic is exactly like a hickup only in another part of the body. You cannot control it, and you find it very anoying. They can all relate to that, and my son has never had problems with his friend due to tics. Best wishes to you both - PANDAS_Denmark

Hi - Just wanted to add, that my son has (had and still has) this scarlatini form rash prior to every PANDAS exercabation, including the first one !

Sure sounds like tics to me too !

Hi - I signed up as well :-) - and as far as I can see, we don´t need anything but a computer (connected to the internet - to view the videopart) and a phone (to hear the sound). Yes - Kurlan is for sure one of the PANDASantagonists. Based on that, I don´t think this is to be seen as a positive result of the word getting out - but as an attempt to help doctors argue/resist, when parents insist, that their child might have PANDAS and/or that their child should be treated with Azithromycin, IVIG, PEX ... :-( As such I find it very positive, that "space is limited" :-) (and that most of the participants might end up being parents to PANDASchildren ;o) ).

Hi Sharon - So sorry to hear, that your daughter is suffering :-(. My son (9 years old, diagnosed with PANDAS) was treated with intravenous antibiotics in 14 days when he was 5 as he had Acute Disseminated EncephaloMyelitis. All of his tics and OCD went away in 24-48 hours - Best wishes to you and your daughter - PANDAS_Denmark

Here we go again :-) This time with an article about Mycoplasma pneumonia infection and ... PANDAS/PITAND ! : "9) Ercan TE, Ercan G, Severge B, Arpaozu M, Karasu G Mycoplasma pneumoniae infection and obsessive-compulsive disease: a case report. J Child Neurol. 2008 Mar;23(3):338-40. It has been demonstrated that obsessive-compulsive disease and/or tic syndromes in children may be triggered by an antecedent infection especially with group A beta-hemolytic streptococci, and this subgroup of children has been designated by the acronym PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections). Other infectious agents such as viruses and bacteria have also been reported to be associated with the acute onset or dramatic exacerbation of obsessive-compulsive disease or Tourette syndrome, and another acronym, PITAND (pediatric infection-triggered autoimmune neuropsychiatric disorder) has appeared in the literature. The involvement of other infectious agents such as Mycoplasma pneumoniae has been described in single case reports. We describe a case of a 5.5-year-old boy who suddenly developed obsessive-compulsive disease symptoms during a M. pneumoniae pneumonia. After treatment with oral clarithromycin, all his obsessive-compulsive disease symptoms disappeared. To our knowledge, this is the first report that shows the association between Mycoplasma pneumoniae infection and obsessive-compulsive disease. [PubMed Citation] [Order full text from Infotrieve]"

Hi again ) Just found another article, that might be of benefit : "Rev Med Brux. 2008 Mar-Apr;29(2):103-6. [Acute disseminated encephalomyelitis associated with mycoplasma pneumoniae infection] [Article in French] Njeukui Tchoua J, Noel S, Sellitti E, Vanderheyden JE, Blaze V. Service de Neurologie, C.H.U. de Charleroi, Site Vésale, Montigny-le-Tilleul. njeukui@hotmail.com A 20-year old man was hospitalized for acute urinary retention, headaches and mild fever. Neurological examination revealed a meningeal syndrome and a bilateral pyramidal syndrome of lower extremities with a C7 sensory level. The level of antibodies against Mycoplasma pneumoniae (Igm and IgG) suggested a recent unrecognized infection. Cerebral and medullar MRI showed T2-hyperintense lesions in the right thalamus and at the level of C1-C2 and C6. Evoked potentials were normal but EEG showed some bilateral theta waves. The cerebrospinal fluid analysis demonstrated 170 white cells/mm3 with 66% lymphocytes and proteins at 73 mg/dl. A few weeks after treatment with intravenous immunoglobulins at 0.4 g/kg/day for 5 days, the patient showed complete clinical recovery. MRI and urinary flowrate normalized after nine weeks. The authors are discussing the probable diagnosis of acute disseminated encephalomyelitis occurring after a mycoplasma unrecognized infection" ---- And a third ;-) "Pediatr Neurol. 2008 May;38(5):357-9. Mycoplasma pneumoniae encephalopathy: recovery after intravenous immunoglobulin. Attilakos A, Palaiologou P, Lagona E, Voutsioti A, Dinopoulos A. Department of Pediatrics, Athens Medical Center Hospital, Athens, Greece. attilakos@hotmail.com In a case of Mycoplasma pneumoniae encephalopathy in a 7-year-old girl, the microorganism was identified by serologic and pharyngeal-swab polymerase chain reaction methods. Failure to detect or isolate the pathogen in the cerebrospinal fluid and the significant rapid clinical recovery of the patient after intravenous immunoglobulin administration suggest an immune-mediated mechanism. In critically ill patients with M. pneumoniae encephalopathy, prompt intravenous immunoglobulin treatment may be beneficial and can be considered as a primary or alternative therapeutic approach, especially when use of corticosteroids is insecure." PMID: 18410853 [PubMed - indexed for MEDLINE] I am well aware, that PANDAS/PITAND isn´t mentioned in the abstracts - and possible not in the articles either. However PANDAS is by several doctors/scientists considered a subcategory/variant of ADEM, Acute Disseminated EncephaloMyelitis (or MDEM : Multiphasic Disseminated EncephaloMyelitis). All of my best wishes to you and your daughter ! PANDAS_Denmark

Two things made me wonder the other day : 1. Buster wrote in a comment, that "My wife and I wonder if perhaps this is really a blood-brain barrier problem and all the variants are really just different manifestations of how the BBB gets inflammed -- or how antibodies cross the BBB." 2. In a poll Buster asked if "My child is a canary for strep in the household (i.e., behavior changes when someone has strep)" To take the latest first : My son is for sure like a canary for strep in the household (and every where else!) - and a very good and reliable canary : Besides the raise/explosion of tics and/or OCD when exposed to strep (or other bacterias/vira) he gets petecchias as well. Allways in this order : Exposed Within few hours : Petecchias Within a day or two : A raise/explosion of tics and/or OCD, separations anxiety etc. As such I ALLWAYS know when he has been exposed to strep (to an extend, where he/his immune system reacts) BEFORE he gets the raise in tics and/or OCD. The pettechia he gets is due to vasculitis, that showed up and that he was diagnosed with at the same time as the PANDAS : That is a chronic inflammatory destruction of the blood vessels (http://en.wikipedia.org/wiki/Vasculitis). I have allways thought of my sons two diagnosis/medical conditions as two independent, "paralel" (autoimmune) conditions, but Busters comment on the BBB made me think : What if the the vasculitis (and the chronic inflammatory destruction of the blood vessels) is the condition that makes (my sons and other kids) PANDAS (not only in my opinion considered a variant of ADEM or MDEM) "possible" ? That is : What if vasculitis might play a role in making the antibodies due to a strep infection able to cross the BBB ? In my search for an answer I found this article : "Vasculitis and rheumatologic diseases may play role in the pathogenesis of acute disseminated encephalomyelitis (ADEM). Sabayan B, Zolghadrasli A. Research Center of Shiraz University of Medical Sciences, Shiraz, Fars, Iran. b.sabayan@gmail.com <b.sabayan@gmail.com> ABSTRACT : Acute disseminated encephalomyelitis (ADEM) is defined as a multifocal, monophasic, demyelinating, and inflammatory disease involving the central nervous system. It typically begins within 6 weeks of an antigenic challenge such as infection or immunization. Perivenous inflammation, edema and demyelination are the pathological hallmarks of ADEM. Reactivity of T-cells against myelin components such as myelin basic protein has been found in children with ADEM. The triggers for immune responses in ADEM are not known, but the two most widely accepted hypotheses are molecular mimicry and self-sensitization secondary to CNS infection. Inflammatory cytokines including tumor necrosis factor alpha (TNFalpha), interleukin 2 (IL2) and interferon gamma (INFgamma) are thought to be important in lesion formation in ADEM. Due to the active role of inflammatory cytokines in the pathogenesis of ADEM, any disease contributing to systemic formation of inflammatory cytokines can potentially be an etiologic factor for the initiation of ADEM. In vasculitis and rheumatologic diseases the number of T-cells, T helper type 1 cytokines and other inflammatory cytokines such as TNFalpha increase substantially. We present this hypothesis that in such setting of inflammation, adhesion molecules are up-regulated on the brain capillary endothelium by cytokines and other inflammatory mediators, altering the permeability of the brain blood barrier and so allowing for inflammatory cell migration. The migratory cells attack the basic myelin protein and the final result is the demyelination seen in ADEM. So we propose that vasculitis and rheumatologic diseases may play role in the pathogenesis of ADEM" I am aware, that the article doesn´t prove anything. However I find it very, very interesting - as I would find your comments on it too ! - Best wishes to you all - PANDAS_Denmark

I hope you got my PM some while ago ? I am so very, very sorry that you are having such a hard time to get help for your daughter ! Searching for something else (PANDASrelated), I found this abstract from an article, that might be of some benefit to you ? : "Immediate Relief of Mycoplasma pneumoniae Encephalitis Symptoms After Intravenous Immunoglobulin" (http://www.pedneur.com/article/S0887-8994(09)00317-8/abstract) Abstract : "Mycoplasma pneumoniae may cause acute encephalitis, resulting in severe neurologic complications despite antibiotic therapy. We report the case of a 12-year-old patient who presented with acute onset of orofacial tics, motor restlessness, compulsive behavior, and cerebellar symptoms. Cerebrospinal fluid examination demonstrated lymphocytic meningitis. Polymerase chain reaction for M. pneumoniae was strongly positive in the cerebrospinal fluid. Blood and cerebrospinal fluid were negative for M. pneumoniae antibodies (immunoglobulin M and immunoglobulin G). The child was administered intravenous γ-globulin, which led to a dramatic improvement of her clinical condition and disappearance of the symptoms within 72 hours. This novel case points to the potential value of γ-globulin in M. pneumoniae encephalitis confirmed with polymerase chain reaction and suggests that immediate administration of intravenous γ-globulin in suspected mycoplasma encephalitis should be investigated in a larger patient cohort." Communications should be addressed to:Dr. Servais; Service of Pediatric Neurology and Metabolic Diseases; Hôpital Robert Debré (Assistance Publique-Hôpitaux de Paris); 48 Bvd Serurier; F-75935 Paris Cedex 19, France. Best wishes - PANDAS_Denmark

Dear Susan - I wish you luck ! - hoping, praying and quite sure, that Dr. T will be able to help !

Just remembered : There is an article describing myoclonus as an PANDASvariant : "Acute Myoclonus Secondary to Group A Beta-Hemolytic Streptococcus Infection : A PANDAS Variant", by DiFazio et al. You can find the article here : http://www.capital-neurology.com/files/Qui...s/myoclonus.pdf

Hi Susan - To me it sounds as if your daughter (as my PANDASson (and I myself, diagnosed with MDEM) from time to time) might be having myoclonus or myoclonic jerks (http://en.wikipedia.org/wiki/Myoclonus), which is seen as a symptom in connection with some neurological diseases as well as a symptom connected with ADEM/MDEM (Acute/Multiphasic Disseminated EncephaloMyelitis, which some considers PANDAS to be a variant of). At www.youtube.com you´ll be able to find videos of myoclonus/myoclonic jerks, which differs from both tics and OCD in the way, that : * it is impossible to control the myoclonic jerks, but possible (sometimes) to control tics * it doesn´t feel like an urge to "do" the jerks, as in OCD. The body simply do the jerks "itself", just like hickups Best wishes to you and your daughter !

Hi ) Lauren is finally diagnosed - with PANDAS : http://www.wavy.com/dpp/news/local_news/Sn...ially-diagnosed : "Sneezing girl officially diagnosed Doctors say she has PANDAS Updated: Wednesday, 02 Dec 2009, 6:32 PM EST Published : Wednesday, 02 Dec 2009, 5:38 PM EST Katie Collett CHESAPEAKE, Va. - For several weeks, WAVY.com has been following Lauren Johnson, the 12 year-old Chesapeake girl who started sneezing in upwards of 12,000 times per day after suffering from a bad cold. Recently, Lauren was officially diagnosed with Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus, otherwise known as PANDAS. "Now we can actually treat it as something," says Lauren who is thrilled to finally have a diagnosis. WAVY.com spoke with Dr. Rosario Trifiletti, a child neurologist treating Lauren. He explained the onset of PANDAS. "Following a common streptococcal infection, the most common of which people are familiar with, the strep throat from a few days to a couple of weeks later, there's a marked change in a child that gets this." Trifiletti says those changes happen quickly. PANDAS symptoms include: Cognitive inflexibility, difficult to reason with, as if stuck on an idea Obsessive/repetitive/compulsive argumentative behaviours TICS (repetitive vocalisations of body movements) Tourettes Syndrome Attention deficits and oppositional/defiant behaviours. The good news? There is treatment for Lauren and other children who suffer from PANDAS. "She was placed on antibiotics and has improved considerably," says Dr. Trifiletti. However, there is some bad news. "Lauren is at risk of getting this again, so we're probably going to place her on some sort of...a low dose of antibiotics, for a long period of time," says Dr. Trifiletti. Lauren's family learned the PANDAS diagnosis is relatively unknown. It was discovered only 13 years ago meaning a lot of trial and error. "If it doesn't work, you know, you cry and you go, 'Why? It doesn't work,' and then the next day comes and you try something else, you start something else until you find what works for your child," says Lauren's mother, Lynn choking up. "People need to know about it. I think the more we know as parents, the more we're going to accomplish." Dr. Trifiletti tells WAVY.com there could be millions of kids suffering from PANDAS, but only several thousand have been diagnosed. Lynn Johnson says she's in close contact with other PANDAS parents, networking, sharing new research, and supporting one another. Their goal is to shine more light on the disorder. "

Hi Debbie1 - My son too has had many odd symptoms over the years, including his heart racing just as you describe it. As 99% of the symptoms has allready been explained as part of PANDAS, I wondered if this heart racing could too ... and found this article : http://www.medicalnewstoday.com/articles/141710.php among others pointing that there might be a connection between CaM kinase II and heart beat : ""By examining single cells, we were able to see very basic mechanisms", Wu said. "The sinoatrial cells taken from mice with inhibited CaM kinase II were not able to facilitate calcium function, and thus, each cell's ability to beat slowed down. Since people with arrhythmias have a heart beat that is too fast, the opposite problem may be true -- there is too much CaM kinase II function, resulting in calcium overload." The team will continue to study pathways by which CaM kinase II functions and affects the heart." Best wishes -

A very well written article about possible autism caused by strep - http://ojs.lib.swin.edu.au/index.php/ejap/...le/view/152/175 Best wishes to you all - PANDAS_Denmark

Hi SF Mom - The best short explanation, that I have ever read ! This kind of statement I haven´t seen before, that is that any infections or even colds can stimulate the immune system in a way that results in a PANDAS exacerbation : "Subsequent infections or even colds can stimulate the immune system to produce more of the same kind of antibodies which the triggered the original symptoms." I know from years of experience with my son (and from reading about experiences with other PANDASchildren), that it is quite true, that it is not only new strep infections but also other kinds of infections (and even "just" being exposed to strep and other bacterias and vira) that can lead to a PANDAS exacerbation, but as told, I haven´t seen it stated in articles before. Would you mind tell me, where you have found this ? Best wishes to you and yours - PANDAS_Denmark

Hi All ;o) Just became aware of this new PANDASstudy, and thought you might be interested ? : "Do you know someone with PANDAS or high Strep antibodies? The Great Plains Laboratory, Inc. is looking for volunteers to participate in an upcoming study of pyruvate supplementation on PANDAS symptoms. " More information at : http://www.greatplainslaboratory.com/home/...reptococcus.asp. If anyone knows exactly what "pyruvate supplementation is, I´d personally like to know some more - Best wishes to all of you and your kids - PANDAS_Denmark

Hi All - After yet another exhausting discussion with my sons doctors about prophylactic antibiotics ("for how long ?", "how much ?", "which product ?", "there is no evidence, that it might work to use a higher dose ... and by the way there is still a lot of controversy as to the PANDASdiagnosis itself. Maybe he should not even have the antibiotics, he is given today !", "could we at least not give it a try ?", "oh no, we have to consider the risk of resistence !", "well, considering the risk of resistence, my child is suffering ! how about that !" etc. etc. ... you all know, what I mean), I am planning to buy antibiotics without having a prescription. I am told, that it should be possible, for example via Canadian pharmacies, but I find it very difficult to see whether it is the sites of real or fake pharmacies. Does any of you have experience with this ?? Best wishes to all of you and your children ! PANDAS_Denmark

Hi All - Just found this - new - page on the Internet, telling the story of a PANDASchild : http://childrenshospitalblog.org/one-mothe...1/#comment-1044. Thought you might be interested - Best wishes to you all ! PANDAS_Denmark

Hi Christie (& Diana) - Thank you SO much for the warning ! Just talked to my sons neurologist, who warned me not to give my 9year old PANDASson the H1N1 vaccine too, given that both the thimerosol and the adjuvant in the vaccine (as well as the virus in the vaccine itself) might lead to a PANDAS exacerbation. Praying that the 5year old PANDAS child will soon be better ! Best wishes - PANDAS_Denmark

Hi ) The entire article is here - in PDFformat : http://www.sarnet.org/doc/PANDAS_Mol_Psychiatry_2009.pdf. Best wishes - PANDAS_Denmark