Re: PANDAS, Strep or Herpes?

[Guest guest]

Vicky, Could this be useful re Herpes? http://www.hhv- 6foundation. orgAlso maybe its not too late since Strep testing is sometimes better to do 6 - 8 weeks after a strep infection. Subject: PANDAS, Strep or Herpes?To: Autism-Biomedical-Europe Date: Friday, 6 April, 2012, 19:04

If PANDA'S is caused by strep which is a bacteria why has presented with what looks like Sydenhams Chorea and now has huge Herpes sore on his mouth which is a virus? How would we know if Strep was present when testing takes so long to organize that the moment would have passed and test would be negative.

TIA

Vicky

[Guest guest]

Sydenham's choreaSydenham's chorea is a self-limiting disorder of movement occuring most frequently in association with rheumatic fever. The onset is generally 2 to 6 months after streptococcal infection.ESR and antistreptolysin O titres are usually normal; this is because the episodes occur long after the original infection.Symptoms usually last for 3-6 months. Occasionally symptoms last for up to 1 year. The PANDAS syndrome is similar, but is not characterized by Sydenham's motor dysfunction, but presenting with tics and/or with

psychological components (OCD) and much sooner, days to week after GABHS infection rather than 6–9 months Herpes and Chorea: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2117805/ We describe the detection of antiâ€basal ganglia antibodies (ABGA) in plasma and cerebrospinal fluid (CSF) of a 2.3â€yearâ€old girl with severe chorea 3 weeks after acute herpes simplex virus (HSV) encephalitis... ...This, to our knowledge, is the first report on ABGAâ€positive chorea after HSV 1 encephalitis. An underlying autoimmune mechanism was suggested by the finding of positive ABGA in plasma and

CSF, as well as by rapid clinical improvement after plasmapheresis and systemic immunosuppression. Over an 18â€month observational period, the girl did not show any relapse of compulsive behaviour or chorea.hope this helpsN To: Autism-Biomedical-Europe Sent: Saturday, 7 April 2012, 0:04 Subject: PANDAS, Strep or Herpes?

If PANDA'S is caused by strep which is a bacteria why has presented with what looks like Sydenhams Chorea and now has huge Herpes sore on his mouth which is a virus? How would we know if Strep was present when testing takes so long to organize that the moment would have passed and test would be negative.

TIA

Vicky

[Guest guest]

Thanks for that, it does help somewhat. The problem I have is that is non verbal so we wouldn't know of any underlying conditions until they became visible, ie cold sores, course we would know if he had a cold once it had taken hold but there is no way we would get him blood tested in time for strep.

With the herpes sore this has been a recurrance in 's life from the outset, whilst I know they are very common I can say I don't know of anyone who has them as much as he does and I myself pretty much never have them, in fact is the only person here at home that I ever see with a cold sore!

So we have a mixed bag of symptoms here that ticks all boxes, 's behaviours were acute onset when he was about 6yrs old, at that time his OCD and ticcing were as bad as they are today, he also had tourette like barking, then all went quiet with minor recurrance, or not really minor at all, if it were a normal child everyone would be alarmed. I can't say with certainty that this always followed herpes sore but most likely did as he almost always had one. His OCD and tics reduce considerable after a time and usually come back in winter as the most ferocious but they never disappear from his life completely.

I do wonder with these studies if they are looking at the right people, someone who is diagnosed as severely autistic is unlikely to make it to their study, will not be able to tell them anything if they did and have all their glaringly obvious symptoms dismissed as part of the catch all diagnosis of autism.

Our kids often don't get seen beyond a local level of herd development clinics, one in - one out, these people seem to have a very limited knowledge, OCD is seen as autistic rituals and tics as stimming when they have behaviour outburst that is then considered rage cycle, in fact it doesn't cross their mind that their opinion that autism is cyclical could be because viruses and herpes are cyclical, or maybe they just don't care. I am going to catch it all on film anyway and if paed or CP says these movements are stimming then I want them to put that in writing.

Vicky

PANDAS, Strep or Herpes?

If PANDA'S is caused by strep which is a bacteria why has presented with what looks like Sydenhams Chorea and now has huge Herpes sore on his mouth which is a virus? How would we know if Strep was present when testing takes so long to organize that the moment would have passed and test would be negative.

TIA

Vicky

[Guest guest]

Have you ever tried valtrex or any other rx antifivirals?Natasa Reply-To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Date: Sat, 7 Apr 2012 04:21:39 -0400 (EDT)To: "Autism-Biomedical-Europe " <Autism-Biomedical-Europe >Subject: Re: PANDAS, Strep or Herpes?

Thanks for that, it does help somewhat. The problem I have is that is non verbal so we wouldn't know of any underlying conditions until they became visible, ie cold sores, course we would know if he had a cold once it had taken hold but there is no way we would get him blood tested in time for strep.

With the herpes sore this has been a recurrance in 's life from the outset, whilst I know they are very common I can say I don't know of anyone who has them as much as he does and I myself pretty much never have them, in fact is the only person here at home that I ever see with a cold sore!

So we have a mixed bag of symptoms here that ticks all boxes, 's behaviours were acute onset when he was about 6yrs old, at that time his OCD and ticcing were as bad as they are today, he also had tourette like barking, then all went quiet with minor recurrance, or not really minor at all, if it were a normal child everyone would be alarmed. I can't say with certainty that this always followed herpes sore but most likely did as he almost always had one. His OCD and tics reduce considerable after a time and usually come back in winter as the most ferocious but they never disappear from his life completely.

I do wonder with these studies if they are looking at the right people, someone who is diagnosed as severely autistic is unlikely to make it to their study, will not be able to tell them anything if they did and have all their glaringly obvious symptoms dismissed as part of the catch all diagnosis of autism.

Our kids often don't get seen beyond a local level of herd development clinics, one in - one out, these people seem to have a very limited knowledge, OCD is seen as autistic rituals and tics as stimming when they have behaviour outburst that is then considered rage cycle, in fact it doesn't cross their mind that their opinion that autism is cyclical could be because viruses and herpes are cyclical, or maybe they just don't care. I am going to catch it all on film anyway and if paed or CP says these movements are stimming then I want them to put that in writing.

Vicky PANDAS, Strep or Herpes?

If PANDA'S is caused by strep which is a bacteria why has presented with what looks like Sydenhams Chorea and now has huge Herpes sore on his mouth which is a virus? How would we know if Strep was present when testing takes so long to organize that the moment would have passed and test would be negative.

TIA

Vicky

[Guest guest]

Hi Vicky, What you have mentioned about cyclic behaviours and /or symptoms makes sense to me. Generally our children may have good days

and bad days, often as a result of a recurrent bacterial or viral infection. because their immune system does not, or cannot, mount a full response to it. Have you ever tried antibiotics or antiviral therapy? if so, have you seen any gains?The girl in article was treated successfully by plasmapheresis and systemic immunosuppression. it maybe worth trying. i would contact the authors and ask for their opinion. in terms of NHS immunulogist, I have been there... I hope you get things sorted out. I totally agree with Mandi, Dr G is a good start. N To: Autism-Biomedical-Europe Sent: Saturday, 7 April 2012, 9:21 Subject: Re: PANDAS, Strep or Herpes?

Thanks for that, it does help somewhat. The problem I have is that is non verbal so we wouldn't know of any underlying conditions until they became visible, ie cold sores, course we would know if he had a cold once it had taken hold but there is no way we would get him blood tested in time for strep.

With the herpes sore this has been a recurrance in 's life from the outset, whilst I know they are very common I can say I don't know of anyone who has them as much as he does and I myself pretty much never have them, in fact is the only person here at home that I ever see with a cold sore!

So we have a mixed bag of symptoms here that ticks all boxes, 's behaviours were acute onset when he was about 6yrs old, at that time his OCD and ticcing were as bad as they are today, he also had tourette like barking, then all went quiet with minor recurrance, or not really minor at all, if it were a normal child everyone would be alarmed. I can't say with certainty that this always followed herpes sore but most likely did as he almost always had one. His OCD and tics reduce considerable after a time and usually come back in winter as the most ferocious but they never disappear from his life completely.

I do wonder with these studies if they are looking at the right people, someone who is diagnosed as severely autistic is unlikely to make it to their study, will not be able to tell them anything if they did and have all their glaringly obvious symptoms dismissed as part of the catch all diagnosis of autism.

Our kids often don't get seen beyond a local level of herd development clinics, one in - one out, these people seem to have a very limited knowledge, OCD is seen as autistic rituals and tics as stimming when they have behaviour outburst that is then considered rage cycle, in fact it doesn't cross their mind that their opinion that autism is cyclical could be because viruses and herpes are cyclical, or maybe they just don't care. I am going to catch it all on film anyway and if paed or CP says these

movements are stimming then I want them to put that in writing.

Vicky

PANDAS, Strep or Herpes?

If PANDA'S is caused by strep which is a bacteria why has presented with what looks like Sydenhams Chorea and now has huge Herpes sore on his mouth which is a virus? How would we know if Strep was present when testing takes so long to organize that the moment would have passed and test would be negative.

TIA

Vicky