ARmom

Hi, Just wanted to say that I am from the UK and have experienced pretty much the same responses as yourself from the UK Doctors. I firmly believe my DS6 has pandas and I did indeed contact Dr Giovanni, but all he did was pass me onto Prof. Mary Robertson who is a Tourettes specialist! However, I am now getting my son treated at the Breakspear Hospital in Hertfordshire who do indeed believe in PANDAS and as far as I am aware are willing to treat with abx and ivig. I ought to mention that they are primarily an allergy clinic and do believe that his tics could also be due to Gluten/dairy intolerance. Fortunately my DS seems to be okay at the moment (and I have greatly reduced Gluten from his diet, but not completely eliminated it) and his symptoms are minimal, but when they flare up they are severe!! It seems to me that all they want to do in the UK is diagnose our children with Tourettes/OCD and put them on psych meds. However, my DS has had severe motor/vocal tics, OCD, emotional problems, poor handwriting and separation anxiety but when the strep was out of his system they all but disappeared. The symptoms only return and absolutely correspond with strep or viral infections and sometimes there can be upto a 4-5 month gap, therefore he does not meet the diagnostic criteria for tourettes.

We also fit the phenotype, I am a Computer Programmer and my husband is a statistician. I had tics as a child but mainly the eye blinking thing which went completely when I was 14 and my husband has signs of OCD i.e all is clothes in his wardrobe have to be sorted in trousers, shirts etc with colour coded hangers and all the hangers facing the right way!!

Hi, I am new here to this forum but would like some advice from those in the know, about whether my 5 year old son is suffering from PANDA's. In September last year my son woke up one day and was very angry he was raging at his new baby brother and was totally out of character, I remember saying to him that he is a changed person and I wanted my old son back. A few days later he started to jerk his head intermittent at first but then within 2 weeks it progressed to every second and then started to change in nature to head shakes and then body like shivers. He also did the odd leg jerk and hand jerk but these where very intermittent. He was referred to a neurologist who ordered an eeg. This came back abnormal and they promptly started him on sodium valproate, they did this on the premise of his body movements and abnormal eeg (even though he had no loss of consciousness at all). I also got a second opinion from another neurologist who said it was not epilepsy because they were too frequent and they were not stopping him from going about his day to day business. He wanted to do an 8hour veeg just to confirm this. However, when my son was eventually on his maximum dose everything got better, his behavior, personality and he had no tics at all (therefore we did not pursue the veeg). We were all convinced that it was epilepsy and the medication was controlling it. Well approx 4 -6 weeks ago, I had a very bad throat infection that eventually went away with antibiotics, I am positive it was strep as I have had this in the past and suffer from tonsillitus now and again. On saturday my son started ticcing again with the head jerks and they were very frequent, practically every second. Apart from this he is exhibiting other symptoms that may well have been present before, but because the tics were so severe and with the epilepsy thing they were probably my least concern. These symptoms are the constant need to be by my side, he will not play in his room alone, he keeps asking if I love him all the time. He has frequent temper tantrums and crying fits, then the next minute he will be fine. Sometimes he says he doesn't love his family and hates everyone and then 10 minutes later he loves everyone. He prays quite regular and asks god to protect everyone and that he will protect god!!. He urinates frequently even though he barely drinks anything all day. His food intake has gone down, and he said he wants to be a baby again, so won't eat sometimes so that he doesn't grow??? He has started to complain about pains underneath his knees and gets this almost daily. He does get an itchy bottom quite regularly and this has been happening even while the symptoms went away. Oh yeah and the handwriting issue, when he writes it is lower case and then upper case in the same word, then he runs out of space and squashes the letters at the end and carries on either above or below at the right margin not the left margin. All this has come as a bit of a shock, because it has been 3 months with no symptoms and then all of a sudden it is back. Our clinical psychologist, however has said this is also typical of tic disorders as they will wax and wane I have been reading most of the posts on this forum and the tourettes forum and a lot more of the posts here seem to relate more. The strange thing is today my husband was diagnosed with strep throat and has been given a course of penicillan. My questions are basically 1) Could this potentially be PANDAS 2) Could I have passed the strep onto my son, (he did not really exhibit any symptoms) and then he passed it onto my husband My son has been referred to the child mental health services and they are going to do a school follow up and mentioned that it might possibly be tourettes but they need to investigate further. I will mention PANDAS to them but am not hopeful they will take it seriously, my doctor has never even heard of it. I would also like to know how long a typical episode of PANDAS lasts from your own personal experiences, and when do the symptoms start to wane during a typical episode. Also, from what I have read, whether treated or not treated, do they ever grow out of this condition? My doctor will not even entertain the idea of doing swabs or culture testing because she has not heard of it and says it is upto the child mental health people to sort it out, she just wanted us out of the surgery asap to see her next patient! So I am pretty much on my own Thanks