PANDAS_Denmark

Hi, So very sorry to hear, that you are having such a hard time getting treatment for your child ! Hoping this might help you : "Evidence-Based Guidelines on the Use of Intravenous Immune Globulin for Hematologic and Neurologic Conditions" : 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. The guidelines states, that : "Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS) IVIG is recommended as an option for treatment of patients with PANDAS. Based on consensus by the expert panel, diagnosis of PANDAS requires expert consultation." (http://www.bloodmed.com/contentimage/guidelines/2854.pdf) Best wishes -

Hi Buster, I find it hard to answer question no. 3 : "How sure are you your child has PANDAS". Am I to choose "Definite (IVIG seemed to cure)", if I (and the doctors) am absolutely sure, that my child has PANDAS, but don´t believe or experience, that IVIG is a permanent cure ? Or am I to choose "Very Likely ..." given the above mentioned ? Couldn´t/shouldn´t it be possible to answer : "Definite (has had all clinical symptoms during PANDASexacerbations (and have periods without symptoms between PANDASexacerbations), prednisone burst and antibiotics are allways effective, IVIG brings remission, however my child has new PANDASexacerbations whenever he is infected or even exposed to strep (and/or other bacterias and vira) even after IVIG" ?

You might want to take a look at this article : Evidence-Based Guidelines on the Use of Intravenous Immune Globulin for Hematologic and Neurologic Conditions : ttp://www.bloodmed.com/contentimage/guidelines/2854.pdf. The article writen of behalf of the canadian IVIG Hematology and Neurology Expert Panels states that, "IVIG is recommended as an option for treatment of patients with PANDAS."

Linda, For what ever it is worth, I want to let you know, that my 9year old PANDASson gets scarlatini form rash every time he is exposed to strep. At those times it has been possible to confirm the strep in relatives and/or friends, but not allways in my son. This has been the case even though my son is treated prophylactically with Azithromycin. The last 6 month I have been able to give my son more penicllin, when to a certain degree knowing for sure, that he has been exposed to strep and starting to see a reaction in him : Scarlatini form rash, headache, seeing floaters, complaining that his throat hurts, beginning to tic (often blinking his eyes is the first tic), frequent urination, beginning OCDsymptoms, lack of concentration, inverted letters and numbers when writing, separation anxiety ... etc. My experience is, that giving him more penicillin certainly makes a difference. It has been possible to avoid some of the PANDASexacerbations, that I know for sure, that he would have had otherwise - and the PANDASexacerbations, that was unavoidable (often it seems because I waited to long to increase the penicillin !?) has been much much shorter and less severe, than it has been the case in the 4 years before. Wishing you ALL the best !

Living in Europe (Denmark) and never heard of it ! Neither from parents to PANDASkids, nor from doctors or literature. Sounds crazy to me, given the fact that lots of these kids react with PANDASexacerbations from just being in the same room as people (or dogs or cats ...) infected with strep -

Me too

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Thank you very much for spreading the word ! I showed the segment to DS9 (PANDAS) a few minutes ago. Had to promise him to let you know, that your daughter is very, very beautyfull ;-) I (and my son) wish you all all the best !

We can do this ! Just sent a personal message to all of my Facebook friends, begging them to vote !

We quit using the Bontech Supps a few months ago to see if we did better on individual supplements without the taurine. I decided to give them a try again this past week just to see if they did help and it is so much simpler too. I have to say I have noticed a real reduction in tics this week. The Biaxin has really helped the mood and a good portion of the OCD but it didn't seem to decrease his most common tics at all. So in our case, the taurine, which is usually a tic reducer for most, definitely does help. Taurine (and epsom salt) has been the most important tic reducer for my DS9 too -

We too have a history of strep-related, autoimmune diseases in the family :-( DS9 - PANDAS. Scarlet fever twice. I am pretty sure, I had PANDAS as a child. 7 years old first exacerbation, following a strep throat : Sniffing tics, nail biting, frequent urination, mild OCD. 16 years old following pneumonia : Anorexia Nervosa, OCD. 40 years old diagnosed with Multiphasic EncephaloMyelitis due to strep (+ Cunningham Test), with MSlike neurological symptoms. No psychological symptoms. Scarlet fever. Grandmother : Reumatic fever and kidney removed (Glomerulonephritis) (strep). Depression and OCD - but only in the wintertime !! Scarlet fever. Coincidence ?

Worried Dad, I have to say, that I appreciate, that you occupy your thoughts with this - allthough I an SO sorry, that you (too) have to ! And I really appreciate too, that you took the time to write it down ! It is a very easy understandable picture - and as far as I have been able to understand the litterature on the subject and picture it in MY head : A very precise picture/description too - Best wishes to you all - THANK YOU !

DS9s onset 4½ year ago was even more sudden than "overnight" - that is 3½ hour. I left a happy and in every way normal boy (with the second of two diagnosed strep throats in a month) in the kindergarten in the morning and when I picked him up only 3½ hour later I met a total changed boy with symptoms he had never had before : lots of tics, spitting, crying and screaming that he couldn´t stand the thoughts that he had and that he only wanted to die, kicking, biting, sniffing, handwashing all the time, frequently urinating, not being able to touch anything or anyone - not even himself, afraid of germs, headache, lightsensitity, seing floaters, sudden separation anxiety ... etc. etc. :-(

Hi Kari, So sorry your son is going through is ! Don´t know if it might help you, but I thought it would be worth mentioning, that my son is complaining of floaters and presenting with what looks more like Opsoclonus Myoclonus than nystagmus during especially the beginning of every one of his PANDASexcerbations - Please let us know, what Dr. Ts thoughts are on this - Best wishes to both of you !

The interview with Dr. K. : http://www.chicagopublicradio.org/Content.aspx?audioID=40521

"At the end of the day, in PANDAS patients, there is still the trigger. It is very very important to try to find the trigger(s) as early as possible and try to treat them. Immune treatments will put the disease into remission, but root cause treatments are the only way to a cure. Dr. T" I couldn´t agree more ! However I have to ask : How do you define "root cause treatments" : IVIG, PEX ... or ?

Hi - Just found this article - very interesting - article (and have to add, that my son (9 years old, PANDASdiagnosed 4 years ago) is having a hurting knee (to the point where he cannot walk), whenever he´s infected with strep, that no doctor so far has ever had an interest in dianosing or treating :-( ) JCR: Journal of Clinical Rheumatology: January 2010 - Volume 16 - Issue 1 - pp 3-6 doi: 10.1097/RHU.0b013e3181c3444c Original Article Poststreptococcal Reactive Arthritis and the Association With Tendonitis, Tenosynovitis, and Enthesitis Sarakbi, Housam Aldeen MD, FACR; Hammoudeh, Mohammed MD, FACP; Kanjar, Izzat MD, FACR; Al-Emadi, Samar MD, FACR; Mahdy, Salah MD; Siam, Abdulrahim MD Abstract Aim: To study the clinical presentation of poststreptococcal reactive arthritis (PSRA) and its periarticular manifestation. Methods: This is a retrospective study. The files of all patients diagnosed with PSRA between January 2004 and November 2007 were reviewed with a predetermined checklist. Patients were included if they met our study criteria for diagnosis of PSRA. Results: A total of 33 files were reviewed; 26 of these patients (14 female, 12 male, Arab and Asian, aged 11–41 years) met our agreed protocol for the diagnosis of PSRA. The ethnic backgrounds of the patients were as follows: 18 patients were from Arab origins and 8 patients were Asians. Twenty-one patients (80%) had asymmetric complaints, whereas 5 patients (20%) had symmetrical complaints. Two patients (7.6%) had monoarthritis, 8 patients (30.76%) had oligoarthritis, and 11 patients (42.3%) had polyarthritis. Five patients (19.23%) had only polytendonitis, tenosynovitis, and/or enthesitis. Nine patients (34.61%) had tendonitis, tenosynovitis, or enthesitis alone or with arthritis/arthralgia. The average elevation of antistreptolysin antibodies titer was 624.8 and the average sedimentation rate 44 mm/H. The response to nonsteroidal antiinflammatory drugs was generally good (84.6%), being poor in only 4 patients (15.38%) who required treatment with corticosteroids. Prophylactic penicillin was given to 15 patients (57%). No patient had carditis on presentation or follow-up. Conclusions: It is concluded that polytendonitis, tenosynovitis, and enthesitis are common presentations in PSRA and could be the only manifestation of poststreptococcal infection.

I have to say, have a vision check just in case, but this sounds just like OCD to me (esp the part about not stopping until you acknowledge and that there is obviously nothing to be seen)...but you didn't mention the frequency. I'm just curious. However, some kids have some vision changes with PANDAS. Some have 'flashy lights' and colorful lights and there were a few times that my daughter ran straight into playground equipment, etc when she was in exacerbation. I did have my dds vision checked during exacerbation (was NOT within normal limits) and then after IVIg (20/20 vision). It is amazing how many parts of their little lives this effects. Wishing you the best. Keep us posted on how the steroid burst goes. regards, amy s Amy- Very interesting about the vision. My son actually just got glasses recently. His vision was very bad. Also interesting you mentioned "flashy lights" because he also talks about "sparks". He literally jumps and says "Oh- did you see that spark- I hope it does not start on fire". Sometime I worry that this could just be plain old OCD but then I hear all of the similarities and I truely believe that it has to be PANDAS. Your daughter had IVIG? Did you see improvement? How long ago and how are her symptoms now? Is she on antibiotics now? Sorry so many questions. Thanks My son sees these "floaters" EVERY time he is having an exacerbations - The first two or three times, I thought it was some kind of OCD, but as my son has grown older, he has been able to explain in a better way, what he sees, and that he is fully aware, that it is not spots of light, that is actually there, but that it seems as if they are there. The floaters disappears every time he is getting better - By the way the floaters are allways associated with light sensitivity -

Interesting and very relevant question, that I have to deal with every time my choises are questioned, not only by the school and family, but social workers and doctors as well. I must admit, that I am keeping my DS9 out of school every time that there is confirmed cases of strep in the class, as I know by experience, that he´ll react with an exacerbation due to mere exposure. I look at it this way : I can CHOOSE to keep him out of school for a few days to prevent an exacerbation and as a result of that send a happy and normally functioning kid back in school - or I will HAVE to deal with an unhappy and in every way not functioning (tics, OCD, separation anxiety etc.) kid not able to attend school for weeks anyway, only a few days later. Noone would even consider sending a kid suffering from osteoporosis skiing on the black piste, or am I wrong ?

If you missed Kurlans (anti)PANDAS webinar you can find/download it from here : http://njcts.org/wordpress/. You´ll need a G2M3codec in Windows Media Player to play the presentation. You can download the codec for free from this site : https://www2.gotomeeting.com/codec?Portal=w...gotomeeting.com. By the way it is possible to ask questions, post comments and read Dr. Kurlans answers on the webinar presentation here : http://njcts.org/wordpress/webinars/can-st...-real/#comments.

Hi LaraM - Just wanted to add, that my 9years old PANDAS son see these floaters (usually blue, he says) in the beginning of EVERY PANDASexacerbation too - Best wishes - PANDAS_Denmark

Dear Dr. T - I am SO glad to have you back too - in any colour ! and look forward to read your posts, both here and on the new forum ! PANDAS_Denmark

Hi Wrong Kind of Panda, Thank you for bringing the summary ! Do you mind sharing where you found the article at $4.95 Best wishes PANDAS Denmark