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Everything posted by fifide

  1. PITANDS absolutely! Our DS4 gets exacerbations with viral infections. Proven viral infections on swab and bloods. Coronavirus and Epstein Barr. When the virus passes his tics almost go away. Strep is the big offender though. Since AB prophylaxis his tics are way less.
  2. Bubbasmom, I ask myself that a lot. I really don't know. When it came down to it with the advice we were getting I just felt we should wait until he didn't need the GA. That said I couldn't sleep last night worrying that it might be something else. The lack of clarity about some of his symptoms really makes me worry. My experience might be different from others but I have found the psychiatrist to be interested, caring and open to the idea of PANDAS where the neuro doc is not. Not sure if that helps at all. I really identify with the wanting to know it will get better. We have had a long relapse this time and it would be just wonderful to get back to normality. Take care. Fi
  3. Hi Bubbasmom, When DS4 was last in hospital the neuro doc was considering doing an MRI but as it was to take an hour and a half and because of his age would be under anaesthetic she decided to wait until he was older when he wouldn't need to be asleep. She said there may be inflammation in the basal ganglia which would show up. The reason she/we decided to wait was because it wouldn't change what they are treating with even if there was inflammation. Like you I have dark moments when I worry that there might be some other reason for his symptoms but she has reassured me about this. Another dr said they wouldn't do a CT partly because of the radiation dose it involves and partly because it might not be sensitive to show anything up. Fi
  4. What a lot of eye related symptoms. I am so surprised as the Drs here don't seem to make a connection between his eyes and the PANDAS but so many of you describe really similar symptoms. It really helps to know I am not alone with all of this. Sometimes the drs make me feel like I am wasting their time.
  5. Don't really know anything about the connection between PANDAS and EBV but our DS4 has tested positive on this his 2nd episode of PANDAS. It seems to have made him exceptionally tired and we had other odd neuro symptoms like being unable to walk due to increased muscle tone in his legs that the docs put down to EBV, and his immune system having an unusual reaction to it. I'd love to know more about the connection too.
  6. Hi Tylermom, My DS4 had scarlet fever (caused by strep) one month before he got knee pains, then 1 week after that he woke up with tics never having had any before. He had already had a course of penicillin but still tested positive (swab) for Strep on the day the tics started (we went straight to the hospital they were so dramatic). We don't have a diagnosis from the Dr's here in the UK (they really don't like the PANDAS diagnosis!) but he fits all the criteria and I have no doubt that is what he has. THings had settled a bit in January this year until he got a 2nd (swab confirmed) strep infection in February this year. He is now on long term penicillin. This time the emotional aspects are worst , although the tics have been pretty bad too. He was just 4 when this all started. He has a pretty bad temper too, which he never had before at all. The dr's do think the tics are caused by the strep. Fi
  7. http://www.latitudes.org/forums/index.php?showtopic=7411 Thanks for that!
  8. Do you have a web address for Dr. T's forum? I can't find it! Thanks.
  9. Just waiting for ophthalmology appointment now. He has spots in his vision now too. Migraine has been mentioned and he is certainly very anxious right now. Thanks for all the replies.
  10. Don't worry no panic caused. I know exactly what you mean about eyes. I missed a scan appointment for myself to take him to get his eyes checked on Tuesday! We are waiting for an ophthalmology appointment right now and I will be asking for a dilated exam. Should be in next week or so. He says he can see spots and mistiness now. Otherwise he seems a bit better today. Sorry to hear about your son. Hope he is doing ok. Fi
  11. Not sure what has been going on in the last 4 or 5 days. DS4 has probably had another viral infection and a worsening of tics, anxiety, tummy pains and then yesterday he told me his left eye was "misty". It is so hard to know what a 4yr old means by this. We ended up being seen at the local children's hospital who couldn't come up with any explanation. They said there was nothing to find examining him. He says it has been a little better today but still misty. Am I wrong in thinking he might be describing blurred vision? Has anyone else experienced this with PANDAS? Our neuro doc says it is "atypical"! One other suggestion was a migraine. On top of all that he has been really sad today, crying a lot and not wanting to be left alone at all. I feel like I am totally at a loss with all this right now. It is so scary the way these different symptoms just appear overnight. I am so worried I am giving myself a stomach ache.
  12. Hi, Thanks. It is nice to know we are not on our own here with this.
  13. Hi Allison, Thanks for the reply. I would stay in the US if I were you. There seems to be no acceptance of PANDAS in clinics here. I think they are arguing over semantics and missing the bigger picture. One of the Drs we have seen accepts that Syndenham's chorea causes emotional difficulties and that DS may have a "mild" form of this but that is as far as we have got. I am interested to hear about IVIG shortages. Where did you learn about that? I would be interested in finding out more. Not sure about Canada. I don't think we can go there for care without emigrating. I intend to try and raise the profile of the illness here though. Not sure how yet! Fi
  14. 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. Hi, I am saddened to hear you have had a hard time too trying to find someone who accepts what is going on with your DS. I have been made to feel like I am a neurotic mother especially by our GP surgery because I have questioned everything that has been said about DS' symptoms since day 1. It was my mum who found the NIMH criteria on the internet and I then did a huge amount of reading of the papers written about it by Susan Swedo and others. DS meets all the criteria (except handwriting deterioration cos he isn't yet at school). And yet they have doubts. Some Drs actually behave as if they are threatened because I know more about it than they do. The only saving grace so far is that they are prescribing abx and they seem to be working. Like you there are long periods when DS has no virus/strep on board when things are so much better. No-one has mentioned Tourettes yet. It has been less than a year though. Your experience with gluten and dairy is interesting too. DD is 8 and had a both dairy and egg allergies when she was younger. I will try to cut down on these with DS to see what happens. I hope your good spell with minimal symptoms continues. Fi
  15. Yes. Great Ormond Street in London. Really big paediatric hospital. I think most of the research in the UK on PANDAS happens there. We are a bit stuck by lack of choice in who we get as a Dr here. The NHS doesn't really let you choose! We are near Glasgow in Scotland. One of the Dr's who used to work in our local children's hospital had an interest in PANDAS but he left some time ago Thanks though. I will keep emailing Dr's until we get somewhere.
  16. Thanks for the replies. I will look into both options and see how we go.
  17. Hi, First can I just say what a relief it has been to find this website. My ds first had tics and emotional problems last June after scarlet fever and a proven Strep infection. The neurologists here in the UK acknowledge the link (he was absolutely fine but got the tics overnight) between his strep and tics etc. but don't believe in PANDAS! Everything I read here has convinced me more and more that this is what he has. Things had settled somewhat since December last year but 3 weeks ago he had another Strep throat and also Epstein Barr and had weird neuro symptoms causing him to be unable to use his legs to walk. This settled after a couple of days but his tics have got worse again too. My mum's side of the family has rheumatic fever in the past but no-one has any tic disorder. Anyway, I feel like we are the only family here dealing with this. Various doctors seem to treat me as if I am being neurotic and clutching at PANDAS as an answer when to me it seems so obvious what has happened! If anyone else is here in the UK or has any knowledge of Docs with an interest in PANDAS here I would be very grateful if they would let me know. Thanks for reading, Fiona
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