PANDAS_Denmark

Hi Juls - I have a nearly 7 years old son with PANDAS - and has experienced exactly what you describe concerning your son : Tics starting (again) or getting worse in the end of june/early july. It is now his fourth summer this way. The previous summers I was pretty sure too, that it had to do with swimming, sun lotion or sun. As such I have tried - the previous summers - to avoid these possible triggers one at the time, writing down too in "his" diary, whatever the reactions where. This made it possible for me to conclude, that sun lotion and swimming pools indeed do make his tics worse (and gives him a scarlatini form rash too). Last year year I decided to avoid both sun lotion and swimming pools. However - his tics started anyway at exactly the same time. This made me rethink. Maybe there was another trigger, that I had not thought of previously ? I reread his diary, where I do all kind of notes (a habit I developed during the time before his diagnosis was given, as the doctors knew nothing about PANDAS - and told me I was crazy when I mentioned it). Doing in this, I found that it might be a possible trigger being with other kids having impetigo (a very common skin disease caused by staph or strep , which usually affects pre-school and school-aged children, especially during the summer). This summer - exactly 1 day after being with his best friend having impetigo - his tics restarted :-(. Am I the only having this experience : That impetigo is a (major) trigger ?? Love PANDAS_Denmark

As Dedee I am sure, that there is a connection between PANDAS/Tourette and RLS. First of all I have experienced this - in my 6 year old son, having PANDAS (and as such Tourette) and in my self, having an autoimmune disease comparable to PANDAS. Secondly the neurotransmitter Dopamine is involved in both diseases. When the restlessness is at worst I treat myself and my son with magnesium - and massage. That helps - I´ve just made a quick google-search - on "+tourette +"restless legs"" and found a lot of pages. Sincerely - PANDAS_Denmark

Dear Chemar - I am confused - and hope you can help me :-) For a year now my child has taken EyeQ with both omega 3 and omega 6, based on recommendations on the danish touretteforum. It seems he is doing well taking it. Why should people with autoimmune issues avoid extra omega 6 (and 9) ?? Love - PANDAS_Denmark

Hi - Just for the record, as I think this it is a very interesting and important observation, that TV/computergames and the like triggers the tics : My son react in the very same way.my No TV/computergame for a period, the tics dimishes or go away. Only half and hour of TV/computergame triggers the tics or make them worse, if they are allready there. I have conducted several experiments with this, and the pattern is clear. As a matter of fact the pattern is SO clear, that my 6 year old son has noticed it himself, without me ever mentioning my suspicion to him. Only a week ago he watched Tv for the first time in 30 days - just for an hour. This after a 20 days ticfree period . After watching he went to me and said, "Mom, it is as if my tics restarted, when I watched the movie. I don´t think it is good for me to watch this. Isn´t it strange ?" These kids can be very bright :-) Love - PANDAS_Denmark

Hi - Itsme - I´ve found information about Gamma Strep here : http://64.233.183.104/search?q=cache:CupZ6...cd=21&gl=dk and here : http://66.102.9.104/search?q=cache:DPx_amY...;cd=1&gl=dk PANDAS_Denmark

Thought this casestory might be interesting to us all, and expecially to novices : A Case of Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections : http://ajp.psychiatryonline.org/cgi/content/full/155/11/1592 Love PANDAS_Denmark

Dear Patty - My son complains about pain in his neck in periods too. I have done a diary on my sons symptoms of all kinds for two years now, and reading that, I noticed, that his neck pain was and is allways related to an infection and caused by enlarged lymph nodes. In my sons case it´s like this : Infection causes enlarged lymph nodes, which causes pain in the neck AND more tics and/or OCD. Mostly the infections has been cured by an ordinary penicillincure, and the pain was gone. Hoping not to scare you - or anyone else : A few times however the infections (caused by streptococcus and associated with neck pain) developed to toxic shock and a single time to ADEM, Acute Disseminated EncephaloMyelitis, that is an infection in the cerebral cortex and the spinal cord, comparable with meningitis. I think it is very important knowing that neck pain CAN be (but not necessarily is!) associated with all the above mentioned (and probably more, that I don´t know of), and bring ones child to a doctor, if one has any doubts what causes the pain.

This is exactly why I find the question interesting : Research grants are being turned down, very few doctors knows about the disease - and the parents have to use more hours than they have (with a sick child) to find the necessary information about tests and treatments. And when finding (AND printing) the information the parents have to struggle too - over and over again - to have their children tested, diagnosed - and treated. If we are many enough, we should be able to - not only share the very important and usefull information with each other here but also - spread the information further on and put attention to the importance of research in this horrible and disabling disease. PANDAS_Denmark

My son has had a tic like that too :-(, in periods in a combination with holding his breath, that is - I quess - as if a tic becomes an obsession and vice versa.

Hello :-) First of all let me introduce myself : I´m the mother of a six year old boy with PANDAS. My son has been sick for allmost two years now, but was only recently given the diagnosis : PANDAS, as the first child in Denmark. My child, having both tics and OCD, is treated with immunoglobulin, penicillin (Primcillin, then Spectramox - and in the near future : Zithromox), therapy, vitamins and minerals and fish oil. Autumn, winter and spring is ######. My son being sick with strep over and over again, every time with more and more severe tics and OCD. Summer is much better, as you may have experienced too ? :-) I am convinced, I was a "PANDASchild" myself; but have no longer the tics or OCD. As an adult I´ve had disseminated sclerosislike symptoms instead, and was recently given the diagnosis : MDEM (Multiphasic Disseminating Encephalomyelitis), an autoimmun disease which in my case is triggered by ... streptococcus. I am so happy to have found this forum ! - and very greatfull for all the kind information you are bringing and sharing here ! It´s allready been a great help ! Reading here (and on other sites and forums concerning PANDAS), I was wondering : How many are we ? That is : How many PANDASchildren are there ? And/or : How many concerned parents are we ? And where are we all from ? Do any of you know or have an idea ? Yours sincerely - PANDAS_Denmark