Ashley128

Thank you all so much for your replies. TxPANDAMom thank you your story encouraged me and I am so glad to hear you have made such progress with your daughter. I will definitely make an appt with a suitable dr and will also look into homeopathy thanks Stillhopeful. I have already made diet changes but have not seen much change yet. I am also considering a tonsillectomy later this year. Will let you all know how I go. Thanks again.

Thank you all for your replies. Ozimum thank you, I replied to your PM. Stillhopeful - the challenge is finding doctors in Australia who are familiar with PANDAS. The few there are (such as Dr Dale) are very hard to get an appt with as ozimum mentioned. I wonder if a paediatrician would even see me? My own dr looked at me like I was an alien when I mentioned whether or not she had heard of PANDAS then gave me a very short "no". I would like to get a proper diagnosis so perhaps I can convince my dr to test me for all the things you mentioned. I have had thyroid tests done (for my new found panic disorder) and that was normal. I cannot remember a particular time I felt better after antibiotics, but have only ever been on them for a week or two once a year for tosilitis. The symptoms wax and wane a lot and it all becomes a blur. The panic/anxiety symptoms are very new and have not been on antibiotics since acquiring them. What stands our for me the most is how the symptoms came back literally over night when I was 16 after being tic free for about 4 years, and this was a month or two after a very bad bout of tonsilitis. Since then my tonsils have pretty much always been enlarged and often inflamed. Mama2alex - thank you, my diet is not as good as it could be and I think this is also something I have to pursue. The of going GF and DF does scare me a bit but if it will ultimately help I will try anything. It was just how suddenly these sensitives came about that suprised me as I could always have coffee and take ibuprofen before a few months ago. This is why I thought it could be do with my niece being sick and possibly related to PANDAS.

Hi all. I have been reading this forum for a while and really need some advice. I am 33 and have just made the connection that I most likely have PANDAS. A little background info - I first remember having tics, OCD and irrational fears at about 5 years old. This came around the time that I first had tonsilitis. I remember the tics/OCD coming and going throughout my childhood (as did tonsilitis) then I was tic free from about 12 - 16 although I think may still have a bit of OCD from time to time. Then after a very bad bout of tonsilitis the tics/OCD came back and this time never went away. I regularly had tonsilitis but the drs didn't think I had it enough to take my tonsils out. Drs dismissed my tics and other issues and branded me a "worrier". I then became embarassed about my issues and just tried to live with it. I eventually thought I must have Tourette's syndrome and discussed it with a dr who again dismissed it as "a trait of my personality". I researched constantly, tried many supplements etc with nothing ever really helping. I read about PANDAS but dismissed it because at the time it was only something children were meant to have. Then a few months ago after seeing my 18 month old niece who was very sick at the time I almost immediately developed anxiety and panic disorder. I cannot have caffiene since then as it sends me into a severe panic attack (I had never had a panic attack before this but did have anxiety). I can no longer take ibuprofen since then as it makes me anxious and gives me heart palpitations. So I now have general anxiety, shortness of breath, dizziness and brain fog on top of my usual motor tics, vocal tics and OCD. I also have a severe germ/contamination phobia which I have since being a child. So life has become very difficult! I have seen 4 drs who have all said I have anxiety and want to put me on anti-depressants. I don't want this! So after more research led me to PANDAS, I started considering it as a possibility. I went to a neurotherapy clinic where natural remedies are practiced and the practitioner seemed to think that I have PANDAS but has not done any tests. They want me to do brain mapping, blood tests for vitamin deficiencies and so on (not anything relating to PANDAS as far as I can tell) and do counseling, diet changes etc. All this is going to cost thousands of dollars and as my condition has prevented me from keeping a job for longer than a few months at a time my whole adult life I have no savings! My partner and parents are willing to help if this will alleviate my suffering but I wanted to ask advice from all the experienced, knowledgeable people on this wonderful forum before I go ahead as it is a lot of money. I am in Australia where as I am sure most of you already know medical help for these sorts of issues is scarce. Does this sound like its PANDAS? What is my best option for a proper diagnosis and possible treatments? Thank you in advance.