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  1. Thankyou all so much for your replies. I have taken all suggestions on board. Thanks for helping me to put things into perspective...sometimes that is just so hard... I am constantly questioning my objectivity and that is exhasuting! Ptcgirl thanks so much for your advice....it's so nice to hear someone say they get it...This whole thing has been heartbreaking for us and it's so much more difficult when no one has any idea what you are going through...try as you might to explain it. I will try again to have the doctor check for other infections, however this in itself is an uphill battle.
  2. I apologise in advance for the length of this post.... I would really appreciate any input at all. My DS10 has been in a severe flare up of his pandas since late December. He had been on prophylactic azithromycin and doing well since early September (about 80%). Just before Christmas my other two kids contracted pertussis. Being as DS was on the azith he was covered against the whooping cough. However he started to become symptomatic (severe anxiety and ocd among other things) a couple of weeks after they became ill. The summer holidays (I'm in Australia) have been a nighmare... DS w
  3. Hi, my DS10 has had pandas for the last 2 1/2 years with several ups and downs over that time. We have just recently found a doctor willing to prescribe azithromycin and he hs been on a treatment dose (500mg daily) for the past 2 1/2 months. Initially we had a miracle turnaround, my husband and I were ecstatic with the change. Two of of our other kids were diagnosed with whooping cough about 6 weeks ago and we noticed symptoms starting to fluctuate. Whooping cough has gone and we are now on holidays. A coupe of days into our holiday (about 10 days ago ) symptoms came back with a vengeance..
  4. Hi, I am wondering if anyone might be able to provide links to recent, well researched papers that discuss the benefits of IVIG for treating children with primarily OCD as opposed to tics. Our Paed.Neurologist here believes that the treatment wont benefit OCD symptoms and I need some credible information to take back to him. Also, I would like our DS to take a prophylactic dose of ABX but doctors wont prescribe more than ten days worth, believing that the abx are only required to treat an active infection. If you know of any recent credible research/paper that discusses the benefits of prop
  5. Thankyou to everyone for your advice... I will take it all on board.... Ozimum - I have been in touch with Robyn Cosford and a DAN doctor and all feedback leads to diet etc. have already done the wheat free, sugar free etc etc. I just believe that the key to beating this thing is so much more than a change of diet. Just got to figure out what that is. And yes... more helpful doctors would be great. The trouble seems to be that because PANDAS is so little known here, they dont really have much info and dont seem prepared to take the time to do the research.. Its much easier to try to prescri
  6. Hi, I have a couple of issues for which I would love some input/advice. Firstly - my son - almost 10 - was diagnosed with PANDAS almost two years ago and we have had a long battle with it. Over the last few days - his identical twin brother - who has never had any symptoms at all - has started sniffing his hands constantly - I have noticed it proabably three of four times an hour. He says he doesn't know why he's doing it - and he cant seem to control it. The son with PANDAS hasnt had much of a problem with tics - mostly OCD/Anxiety and Concentration/Attention issues - although there h
  7. Thankyou so much to everyone who has replied. To clarify - the 5ml contains the 400mg of Amoxicillin so he's getting 800mg daily (weight around 33kg) I would have thoguht that this was a fairly decent dose. As the doctor was reluctant to try the use of the abx as a prophylactic I doubt that he will agree to an increase in the dose. My son has had therapy for the initial severe anxiety that he had and he has had enormous benefit from it. His therapist left the practice and it was felt that he had made enough progress. As the OCD is now the major symptom - along with the confusion, lack of
  8. Okay - still working out how this all works - have found your reply Ozimum - thanks so much for your advice
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