Bea

I'm attaching a really useful page from pandasnetwork.org website http://pandasnetwork.org/treatment-2/cheat-sheet/ You'll see that it advises a 10 day treatment and what to do from there if things don't get better. I agree that a UK meet up would be really helpful. I am also keen to raise the profile of PANDAS in the UK as it breaks my heart to think that families are going through this when an early antibiotics treatment could get rid of it. I'm thinking of trying to get a national radio station to do it as a topic on a phone in show. (I have been on an OCD phone in on Radio 5 but was only given a couple of minutes at the end of the show and the last word went to the 'OCD expert' who dismissed it by saying all toddlers and young children go through phases - so frustrating!) Good luck. I'll be interested to see how you get on off the antibiotics. With my daughter I found that after coming off the antibiotics it would always take a couple of weeks for the PANDAS symptoms to tail off.

This is also my first post. I'm in Bristol, UK and I too have struggled with getting any kind of help for my 6 year old daughter who (we believe!) has been suffering from PANDAS for the last 2 years. I will tell you our story, as I have found it so interesting to read about other people's experiences, especially in the UK. DS had an abscess in her neck just before she was 4 which they think was caused by a strep infection. She was treated in hospital and that (other than the obvious trauma of being in hospital), we thought, was the end of that. Six months later, (there may have been another mild strep infection that triggered this), she overnight became a different child. She had severe separation anxiety to the extent that she would be rolling around screaming if anyone left the house. She displayed OCD behaviour eg door shutting, lining up of toys, rituals, obsessed with order, all accompanied with high anxiety. She became aggressive and rude. This was not our 6 year old daughter, it felt like we had lost her. We were terrified and distraught at this sudden change in character and in desperation I started googling OCD in children. A week later, by luck, I managed to find a link to PANDAS. Our GP who had not been able to help us before, was happy to prescribe us a course of penicillin on the basis of our research. A week later, we saw an improvement in her symptoms. Such a relief as I had been thinking she may not be able to start school and was wondering how on earth we were going to carry on like this. 3 weeks later she was absolutely back to her normal self. At that point we saw a consultant paediatrician who made me feel like a completely neurotic mum trying to find an excuse for her daughter's behaviour. Her conclusion was that all children go through funny stages and maybe something had upset her at preschool (despite me explaining that it was much more than this). She was adamant that PANDAS didn't exist. We then saw a consultant neurologist who pretty much concluded the same, including referring to the behaviour as 'this naughtiness' in front of my daughter. We had 3 more episodes that year, each accompanied by a positive strep test and each episode treated with antibiotics as a result of us asking our GP for them. Just before she was 5, DS had what we now realise was probably scarlet fever (two of her classmates were diagnosed with it with similar symptoms). I didn't realise that this can be a trigger for PANDAS so didn't treat it, thinking it would do her immune system good to get over it herself (and of course having no medical advice to help me!) A couple of months later (I think a delayed reaction to this illness) we had a terrible episode. DS's OCD routine before bed would take up to two hours. Checking taps off, cupboards closed lights off. She would need to watch a certain TV program and she would ask the same questions about it and if we didn't answer in a certain way, in a certain volume, she would be on the floor screaming. She would have to brush her teeth, go to the loo etc in a certain order and ask a series of about 40 questions checking things which had to be answered in the same way or again she would be rigid, screaming on the floor. So distressing and stressful. We knew as her parents, as did grandparents that this was not just a 'funny phase'. The other frustrating thing was that generally, out of the house, she would seem normal to friends, maybe just a little withdrawn, so I never felt that anyone truly understood what we were going through. At this point we saw a psychiatrist and what a relief to finally talk to someone who had heard of the condition and actually believed it did exist. The first person to acknowledge that there was something wrong with DS. We were given some advice on cognitive therapy but I didn't find this of much use. DS seemed to be coming down with an infection every few weeks and we would live in dread. We would treat each episode with antibiotics but then took the decision that it would be better to have her on a low prophalactic dose over the winter months rather than having to treat her with a course every few weeks. Our GP supported us with this. This seems to have worked ok, though she did have one infection when on them. Three weeks ago, she came off them and had a strep infection a week later which we treated with a/b. However,before taking her off the propalactics, I had taken DS to see a homeopath who gave her a couple of remedies which seemed to really agree with her. This episode was pretty short and mild. I have done some research into PANDAS and homeopathy and found some really positive stuff. I am enthused. We now need to make the decision as to whether to keep her off the prophalactic a/b and throw ourselves along the homeopathy route (my preferred option) or just put her back on them as she got an infection so quickly (my husband's preferred option). Sorry for such a long story and probably of no help but has felt good to have a rant! I feel nervous but positive about the homeopathy route and will keep you updated.