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fifide

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About fifide

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  • Birthday 06/05/1971

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    Female
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    Scotland, U.K.
  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 rel
  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. An
  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
  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 "a
  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 a
  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 int
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