PANDAS_Denmark

Thank you SO very, very much ! (and all the way from Denmark :-) )

http://www.andersoncooper.com/2012/02/10/could-the-illness-in-le-roy-be-pandas/

In THIS article Swedo is - quite interesting - quoted for saying : "If this many girls had gotten PANDAS in the school, then that meant there was a very virulent form of strep in the school"; that is : PANDASclusters are a possibility given the right (or wrong !) circumstances -

Hm - it seems as if Mechtler did consult Dr. Swedo ? : - If that is in fact correct, I find it highly problematic, given that NIMH just yesterday stated, that Swedo hadn´t seen or examined the Le Roy kids and because of that wasn´t able to make a statement about them or their diagnosis -

When asked the Batavian reporter seems to point at Swedo ! : http://www.facebook.com/thebatavian#!/thebatavian/posts/10150767545159972 IF that is in fact correct, I find it highly problematic, given that NIMH just yesterday stated, that Swedo hadn´t seen or examined the Le Roy kids and because of that wasn´t able to make a statement about them or their diagnosis -

Mechtler & Vige : "Although we have not evaluated all the patients affected, we have considered many other diagnoses, such as PANDAS and neuro-toxicity due to environmental factors. With the cooperation of the New York State Department of Health and nationally recognized PANDAS specialists, we have ruled out these diagnoses ..."

According to The Batavian Q and A with Susan Swedo (http://thebatavian.com/howard-owens/q-dr-susan-swedo-regarding-pandas/30364) if that is considered a reliable source of information, she now states that : "The updated clinical criteria for PANDAS are as follows: 1) Presence of obsessive-compulsive disorder and/or tic disorder; 2) Unusually abrupt onset of symptoms ("overnight," "0 to 60 in one to two days," "possessed by the illness"); 3) Prepubertal onset (NOTE: This criterion was an arbitrary one chosen because post-streptococcal reactions are rare after age 12, but could occur in individuals who do not have protective immunity.); 4) Association with other neuropsychiatric symptoms, including various combinations of the following (NOTE: All would start suddenly and in combination in a previously healthy child): a. Severe separation anxiety (can't leave parent's side, needs to sleep on floor next to their bed etc); b. Generalized anxiety which may progress to episodes of panic and "terror-stricken look"; c. Motoric hyperactivity, abnormal movements and sense of restlessness; d. Sensory abnormalities, including hypersensitivity to light or sounds, distortions of visual perceptions and, occasionally, visual or auditory hallucinations; e. Concentration difficulties, loss of academic abilities, particularly in math and visuo-spatial skills; f. Urinary frequency and new onset of bed-wetting; g. Irritability (sometimes with aggression) and emotional lability. Abrupt onset of depression can also occur, with suicidal ideation; h. Developmental regression, including temper tantrums, "baby talk" and handwriting deterioration (also related to motor symptoms). 5) Association with streptococcal infection. At initial onset, the symptoms may have followed an (asymptomatic and therefore untreated) streptococcal infection by several months or longer, so you might not find the inciting strep infection. However, on subsequent recurrences, the worsening of the neuropsychiatric symptoms may be the first sign of an occult strep infection (and prompt treatment may reduce the OCD and other symptoms). FOR PANS – Criterion #1 is limited to OCD only (no tic disorders as primary diagnosis) and the last criterion is eliminated because PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome and does not include an etiologic component." I´m a bit confused by this : - Now we have BOTH PANDAS AND PANS ? - with two different sets of criteria ? Have I got it all wrong ? Wasn´t the intention to work and agree on a new and better defintion of PANDAS (and PANDASlike diseases/PITAND) ? and as a part of that process to rename the disease - to PANS ? - What SEEMS to happen as far as I can see, is that we will now have PANS that doesn´t include an etiologic component and as such cannot and will not be able to pinpoint adequate treatments but only those that merely adress the symptoms ? - AND we will still have PANDAS, that includes the etiological component, and/but there will still be disagreement as to the question of possible etiological factors - and as a consequence of that : What are the treatment options that should be considered ? - AND the kids with PANDAS(like illness) due to myco, lyme etc. will still be left in the middle of nowhere (or with a PANS diagnosis, that leaves them without treatment options others than those that merely adresses the symptoms ?) What is the gain from all of this ????

Just my words !

"Dr:LeRoy girls have PANDAS-like illness Updated: Tuesday, 07 Feb 2012, 6:25 PM EST Published : Tuesday, 07 Feb 2012, 11:59 AM EST Ed Drantch LEROY, N.Y. (WIVB) - A New Jersey doctor is offering another possible explanation for the illness affecting over a dozen students in LeRoy. Dr. Rosario Trifiletti rebukes the diagnosis of conversion disorder. He says his test results show an infection is behind the girls' unusual symptoms. The uncontrollable shakes and outbursts could be connected to something other than conversion disorder. News 4 has confirmed eight girls from LeRoy High School have now also been diagnosed with a "PANDAS-like" illness. Dr. Trifiletti says infectious triggers could be causing the teens' shakes. Last night on HLN, Dr. Drew Pinsky asked the doctor, "Dr. Trifiletti has believed this entire thing might be an infectious outbreak. And as I hear you talk, doctor, that would be your provisional impression?" "That's right; I think that's one of the main factors and one of the most easily reversed factors here," argued Dr. Trifiletti. In a statement, the doctor said his diagnosis leads to rational medical treatment, which is of immediate importance. He states treatment has already started and notes their response will be helpful in supporting his diagnosis. But there may be disagreement. Dr. Sue Swedo from the National Institutes of Health discovered the syndrome called "PANDAS." She says, "If it's only tics, it's not PANDAS. PANDAS and PANS are both clinical diagnoses. They do not depend on lab tests to make the diagnosis." Dr. Trifiletti says he used lab tests to make the diagnosis, but Dr. Swedo says high levels of strep antibodies are incredibly common in grade school children. You can learn more about PANDAS from the National Institutes of Health here. "You're obligated to prove that strep tider that is elevated actually had anything to do with the onset of symptoms and that's been a major issue with PANDAS all along," Dr. Swedo said. Dr. Trifiletti has not shared his diagnosis with doctors from the Dent Institute, who determined this was a case of conversion disorder. The Dent Institute had no comment on Dr. Trifiletti's report, but did tell News 4 another student in LeRoy has been diagnosed with conversion disorder, bringing the total number of cases to 16" http://www.wivb.com/dpp/news/local/dr-confirms-pandas-in-some-leroy-girls

Wauw ! Thank you for posting this ! This is huge ! Mr. Conversion Disorder caught in a(nother) lie !

Thought someone might be interested in this "conversation" with the Batavian guy about Mechtler and the question of whether Swedo is involved somehow :

Markowski, a biological psychologist and a professor at SUNY Geneseo : He's been closely following the mystery illness in Le Roy in the media. He says the culprit may be a common bacterial infection : "It seems to fit all the symptoms. "The facial tics, uncontrolled movements in the face." http://rochester.ynn.com/content/top_stories/572334/healthy-living--can-pandas-be-ruled-out-/

The interview is now online : http://drdrew.blogs.cnn.com/2012/01/27/erin-brockovich-investigating-teen-mystery-illness/?hpt=dr_mid Erin Brockovich states : “I think the first thing that hit me in my gut was, ‘well, you haven't necessarily ruled anything and everything in or out,’” she said. “It just seemed to be a very quick diagnosis.”

Hi, My 10years old PANDASson suffers from skin peeling as you describe it, every time he has been exposed to strep. The doctors have told me that the skin peeling and PANDAS is "somehow related ... but I am not to worry". Haha :-(

I couldn´t agree more ! You´re amazing ! Thank you !

Hi, My 10 years old PANDASson has peeling skins on his feets (and more seldom his hands too) whenever he is in an PANDASexacerbation; that is whenever he has had an upper respiratory infection or has been exposed to strep - Best regards ...

Hi fr88, How valuable to hear things from your perspective ! I am wondering : Why did you change from Amoxicilian to Zithromax, and from Zithromax to Augmentin ? And did/do you notice any difference ? And what dosage ? Best wishes to you ! A PANDASmom from Denmark

Has any of you suspected or know for certain, that your PANDASchild has suffered from insomnia and/or night terrors as adverse reactions to the treatment with Azithromycin ?? The reason for asking this question is, that my 10 year old PANDAS son has suffered from both insomnia and night terror the last month, and I am not quite sure, what I am to blame : - Yet another PANDASexacerbation despite the use of 250 mg Azithromycin daily to prevent this ? The insomnia and night terror began the exact same night, that my son had a cold and a sore throat and worsened as my son had yet another cold and sore throat. Both times he had tics etc. for a few days, which he hadn´t had for quite some time. OR - An adverse reaction to Azithromycin, as my son has been given 3 x 250 mg of Azithromycin per week for approx. 2 years untill a few weeks before the onset of insomnia and night terrors. At this time the dosis was changed to 7 x 250 mg. per week. What confuses me is that insomnia and night terror is the only PANDASsymptom (OR adverse effect), that my son is having these weeks except from the minor tics a few days. Usually he is suffering from both tics, OCD, separation anxiety etc. during exacerbations. Is it possible, that PANDAS can manifest itself as "only" insomnia and/or night terrors during one of several exacerbations ? Best regards and wishes to you all !

Hi Tresse, My DS9 was diagnosed with vasculitis and PANDAS at the age of 6, having his first severe PANDASexacerbation at the age of 5 (when he was diagnosed with fever seizures and Acute Disseminated EncephaloMyelitis and Meningitis as well). Sorry to say, that the doctors have shown no interest in and have had no luck to find out what kind of vasculitis he has. Whenever my son is exposed to strep and mycoplasma especially, but other bacterias and viruses as well, he reacts with petekkia as a result of the vasculitis and neuropsychological symptoms as a result of the PANDAS. When exposed to strep, he reacts with a scarlatina form rash and peeling feets and hands as well. I have asked the local doctors, what the connection might be between the/his vasculitis and the PANDAS. Could the vasculitis be responsible for a breakdown of the blood-brain-barrier for example ? The doctors however have no other answers than agreeing, that both diseases are immunological diseases and that exacerbations are caused by infection/exposure. My son gets no treatment for the vasculitis. Untill recently he was given 250 mg of Azithromycin 3 times per week prophylactically in an attempt to prevent PANDASexacerbations. The last month he has been given 250 mg per DAY with good results. Best regards, PANDAS_Denmark

Hi Susan, You might want to take a look into nystagmus and myoclonus - Both are known to be possible post strep, post mycoplasma, post whatever ... :-( neurological symptoms I personally suffer from both post strep, post ... - Wishing you and your daughter the very best -

Hi, I once asked Dr. T. about Zithromax-dose and got the following answer : "Dear Dr. T Thank you SO very much for all of your hard work helping PANDASkids and their families ! It is VERY MUCH appreciated ! Not only nationally but also INTERnationally ! I noticed, that you write in one of your latest replies about Zithromax, that the usual dose is 12-20 mg/kg. Giving an example of a kid with a weight of 32 kg the dose should be 380-600 mg per day. I have tried to find guidelines/litterature, that confirms that this is the right dose, when Zithromax is used prophylactically, for instance following rheumatic fever. However I have not been able to find any such guidelines/litterature (and I am sad so say, that the local doctors aren´t of any help). Are you aware of any such guidelines/litterature, that propose or supports the prophylactically use of a dose of 12-20 mg Zithromax/kg per day for instance following rheumatic fever (if not PANDAS)? Guidelines/litterature, that a parent (like myself) could print out and bring to the local doctor when arguing for at least giving it a (best) try ? Once again : Thank you so very much ! Best regards, PANDASDenmark" Dr. Ts reply : "Here is a good resource http://www.rxlist.com/zithromax-drug.htm see "dosages and indication". For tonsillitis, 12 mg/kg is used, whereas 10-30 mg/kg is used in other indications. For PANDAS, I use 12-20 mg/kg." Source : http://pandas.yuku.com/topic/135 Best wishes, PANDAS_Denmark

Hi momcap, Sorry to say, that I personally don´t know of a PANDAS-educated doctor in Canada, but you might show your doctor this article : Evidence-Based Guidelines on the Use of Intravenous Immune Globulin for Hematologic and Neurologic Conditions Paula Robinson, David Anderson, Melissa Brouwers, Thomas E. Feasby, and Heather Hume, on behalf of the IVIG Hematology and Neurology Expert Panels A 2007 Published by Elsevier Inc. (http://www.bloodmed.com/contentimage/guidelines/2854.pdf) "In Canada, intravenous immunoglobulin (IVIG) use has increased by 115% over the past 7 to 8 years. Given this increased usage, Canadian Blood Services and the National Advisory Committee on Blood and Blood Products for Canada identified the need to develop and disseminate evidencebased guidelines to facilitate appropriate IVIG use. As a result, guidelines for IVIG use in hematologic and neurologic conditions have been developed and are published in this supplement of Transfusion Medicine Reviews. This commentary provides a brief description of the process used to develop these guidelines and includes a summary of the recommendations for IVIG use in the various conditions evaluated. ... IVIG is recommended as an option for treatment of patients with PANDAS." All the best wishes, PANDAS_Denmark

Hi, I have to agree : Thank God you're you ! You are amazing ! Are you aware, that narcolepsi, autoimmunity and strep-infections seems to be related "somehow" ? I read an article the other day, saying that there is increasing evidence, that it seems to be the case. Couldn´t find that particular article, but found this instead : http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2717204/pdf/aasm.32.8.979.pdf. Maybe you can use this ... All the best wishes to you -

Finally ! Wonderfull ! Marvelous ! Amazing ! ...