joely

Hi, Thank you for that info. I will keep posting updates, I am a bit surprised that there isn't more info from UK parents online especially if their child is now better. There doesn't seem to be anything from UK professionals either. My son is going to have an OT assessment as his OCD symptoms will be very obvious in a physical assessment. So far it has just been us sitting there describing what he does. I am going back to the first GP who was very supportive and the microbiologist who was very interested in this as he should be able to suggest other tests/swabs that can be done. Since we saw the Community Padiatrician and our own GP everything has gone on hold while we wait to see a psychiatrist at Great Ormond St. They are clearly not convinced it is PANDAS, because he has autism I don't think they are seeing this as something new that started when he was ill a few months ago. Best wishes.

Hi, Thank you for the good advice. I have had a lot of info from suzanne.ayres@yahoo.co.uk today as well. The first GP was very supportive and she spoke to a microbiologist who was very interested but then it got moved on to Community Paediatrician and our own GP and they are not convinced because of the test results being normal. It is a case of trying to push things through while needing them to do the referrals. Take care.

Hi, Thank you, sorry to hear you are still in this situation. I have been trying to search for help but no luck so far. Prof Hill no longer works at Great Ormond Street Hospital only at his private Harley Street clinic I was told it was around 6-8 weeks waiting list and that we would need a GP referral. The first appointment would cost £800 which I don't have. Prof Giovannoni at Bart's Hosp doesn't see paediatric cases but they referred me to Dr Isobel Heyman at Great Ormond St, I have called twice sent an email direct to her and the Community Paediatrician has referred my son as we are local ( there are funding issues in referring him even to Maudsley in South London) but I haven't heard anything yet. This is so frustrating the antibiotics worked and I was told by the Paediatrician that he would go on a lower dose longer term but this hasn't happened because she wants him to see a psychiatrist as his first and only tests came back normal. What natural supplements or antibiotics should we try ? There is an email address for UK PANDAS support on another post lisharrison@hotmail.com I will try this today. Any advice would be appreciated, there must be some people in the UK who have had success or in a similar situation.

Hi, sadly we're still battling in the UK. Our paediatrician referred us to Prof Hill. I spoke to his PA to arrange a private consultation. He has an eleven week wait for new patients. We'll go on his list and I know I'm being impatient but it is so frustrating when you feel you're in limbo. We also had short lived improvements after antibiotics. Our best hope at the moment is getting our paediatrician to prescribe on the advise of a US doc. We know he is already doing that for one of his other patients that has PANDAS. It is such a battle though. Hope things go well for you.

Hi, Thank you very much for the information on UK doctors. My son is 15 and has autism and has had severe OCD symptoms for about 2 months now. I found out about PANDAS online and the GP did a throat swab and blood tests but these have come back negative. He had a one week course of antibiotics and a couple of days after finishing the tablets he was back to his usual self for just a week but then the symptoms came back just as bad. The Community Paediatrician wants him to be admitted to the paediatric ward for observation. I would really appreciate hearing from anyone else in a similar situation, and especially if your child is ok now. Has anyone had any success by contacting Prof Giovannoni or Prof Hill ? Thank you.