Sorry Guys

[Dr_Rosario_Trifiletti]

Oh dear,

 

I forgot that Lynn J did tell me about the WebSite and actually asked me to be on the Board of Directors, which I agreed to do!

 

The WebSite is evolving.

 

Now that coffee has cleared the cobwebs ....

 

In my view - PANDAS is more common that Autism

 

Do you know how many Autism Websites /Foundations etc there are out there?

 

There's room for many PANDAS sites and foundations - but it is important that there be a CENTRAL site that is run by physicians that see these patients day in and day out. It's OK that they have fav docs and fav research slants - any research is better than no research.

 

At this time, there is a lot of parents wondering "does or could my child have PANDAS" and they need a reliable source of information. This is what the "Tourette Syndrome Association" and "OCF", whatever you may think about them, serve to do for the Tourette's and OCD, respectively.

 

We need to do the same for PANDAS.

 

As I have said many times it's CREDIBILITY that's needed.

 

There is not a single extramural NIH-funded (Swedo's work was inside the NIH, intramural) grant focused on PANDAS. There is a lot of work to do. Researchers ALWAYS follow the money - they have to in order to survive. To get where we need to go with this we need unity, credibility and persistence. Unfortunately, we have the added pressures of a difficult economy and impending health-care reform uncertainties.

 

So more than ever, we need to fight the disease, not each other.

[Alex]

No worries. I'm sure you are a hero to the Johnson family and many of us on here. Keep up the good work. I'd love to know if you and Dr. K have compared notes and see if each of you could gain from the others knowledge and experience.

 

Alex

[Dr_Rosario_Trifiletti]

No worries. I'm sure you are a hero to the Johnson family and many of us on here. Keep up the good work. I'd love to know if you and Dr. K have compared notes and see if each of you could gain from the others knowledge and experience.

 

Alex

 

Thanks. No, Dr. K and I have not compared notes. I think we are both very busy and the best way to do this may be face-to-face when I come to Chicago in May. This is a complex disease which (like autism) seems to affect no two children in exactly the same way - so the idea of a rigid protocol is probably not in the cards. I hope that, with the think tank experience we can pool everyones experience and come up with some sort of "best practices" statement.

 

Dr. T

[peglem]

In my view - PANDAS is more common that Autism

 

Do you know how many Autism Websites /Foundations etc there are out there?

 

But, has this served the cause of autism research and treatment well? Personally, I don't think it has. Trying to wade through all of that to get at good information (precious little of that!) is quite daunting and leaves parents and patients not quite knowing where to turn or who to believe.

[Alex]

No worries. I'm sure you are a hero to the Johnson family and many of us on here. Keep up the good work. I'd love to know if you and Dr. K have compared notes and see if each of you could gain from the others knowledge and experience.

 

Alex

 

Thanks. No, Dr. K and I have not compared notes. I think we are both very busy and the best way to do this may be face-to-face when I come to Chicago in May. This is a complex disease which (like autism) seems to affect no two children in exactly the same way - so the idea of a rigid protocol is probably not in the cards. I hope that, with the think tank experience we can pool everyones experience and come up with some sort of "best practices" statement.

 

Dr. T

 

Dr. T.

 

Why wait until May? We know Dr. K is fairly quick to recommend IVIG. You prefer to try other avenues before proceeding down that path. You and he are probably the leading voices on PANDAS treatment. You care deeply about the patients which is so admirable. With that in mind, it doesn't make sense to delay a meeting of the minds when the two of you are giving confliciting advice. At a minimum you could get a head start on what will be discussed at the think tank.

[Dr_Rosario_Trifiletti]

In my view - PANDAS is more common that Autism

 

Do you know how many Autism Websites /Foundations etc there are out there?

 

But, has this served the cause of autism research and treatment well? Personally, I don't think it has. Trying to wade through all of that to get at good information (precious little of that!) is quite daunting and leaves parents and patients not quite knowing where to turn or who to believe.

 

I agree Peglem. A couple is good. A thousand is too many. I predict that websites, books, foundations, etc will soon be multiplying like - ugggh - bacteria.

 

I think it would be a shame for this area to devolve into a network of self-proclaimed experts pushing alternative treatments to desperate parents looking for a miracle cure. PANDAS/PITANDS is a medical condition that I think is rapidly becoming understandable and subject to testable hypotheses and evidence-based conclusion. Autism is 20 years ahead of us in name recognition but 20 years behind in scientific understanding!

 

This is not to say that good nutrition, dietary strategies, and other complimentary approaches don't help, but not in the powerful and direct way the proper antibiotic will

 

Dr. T

[Dr_Rosario_Trifiletti]

No worries. I'm sure you are a hero to the Johnson family and many of us on here. Keep up the good work. I'd love to know if you and Dr. K have compared notes and see if each of you could gain from the others knowledge and experience.

 

Alex

 

Thanks. No, Dr. K and I have not compared notes. I think we are both very busy and the best way to do this may be face-to-face when I come to Chicago in May. This is a complex disease which (like autism) seems to affect no two children in exactly the same way - so the idea of a rigid protocol is probably not in the cards. I hope that, with the think tank experience we can pool everyones experience and come up with some sort of "best practices" statement.

 

Dr. T

 

Dr. T.

 

Why wait until May? We know Dr. K is fairly quick to recommend IVIG. You prefer to try other avenues before proceeding down that path. You and he are probably the leading voices on PANDAS treatment. You care deeply about the patients which is so admirable. With that in mind, it doesn't make sense to delay a meeting of the minds when the two of you are giving confliciting advice. At a minimum you could get a head start on what will be discussed at the think tank.

 

You are right. It's not fair to all of you to wait until May.

 

I also don't think we are giving conflicting advice, just seeing a different patient population and for different lengths of follow-up. There is no "right way" to treat this disease (at least not yet) and I approach each case as individually and analytically as possible.

 

I will try to contact Dr. K and try to set up a discussion with him. If he is in agreement, I will report our consensus to you right here ....

 

Dr. T

[thereishope]

You need a personal assitant, Dr T!

[Alex]

Dr. T,

 

With all sincerity, you are awesome! Thanks for all you are doing and all that is yet to come.

 

Alex

[EAMom]

Senior moment excused...I have them and I'm not all that senior! The personal assitant idea is a good one, you have a lot on your plate.

[Chemar]

I think it would be a shame for this area to devolve into a network of self-proclaimed experts pushing alternative treatments to desperate parents looking for a miracle cure. PANDAS/PITANDS is a medical condition that I think is rapidly becoming understandable and subject to testable hypotheses and evidence-based conclusion. Autism is 20 years ahead of us in name recognition but 20 years behind in scientific understanding!

 

This is not to say that good nutrition, dietary strategies, and other complimentary approaches don't help, but not in the powerful and direct way the proper antibiotic will

 

Dr. T

 

not sure who the "self proclaimed experts" are that you are referring to but that comment sounds a bit like the "expert" tourette syndrome doctors who told me my son would never be ok if I didnt give him the strong antipsychotic drugs and SSRIs for his TS/OCD

 

 

and let's not forget that ACN/Latitudes has always been about promoting alternative and complementary treatments

 

thank goodness for that, and that I found latitudes magazine and then these forums, or my son would likely still have been in crisis! I found the stepping stones here to help bring about meaningful change in his condition, with the help of remarkable physicians who were open minded to the incredible healing that many alternative and complementary treatments can bring about

 

that obviously doesnt negate the essential role of antibiotics and other medications, and that we all agree they are often urgently needed in crisis situations, and save lives literally and figuratively, nor of how important they are for those dealing with PANDAS....... but still, that remark was a bit insensitive considering the purpose of ACN/Latitudes IMHO and especially too as the forums here have always been about members sharing their experiences, information and support for one another, not "experts"

[Dr_Rosario_Trifiletti]

I think it would be a shame for this area to devolve into a network of self-proclaimed experts pushing alternative treatments to desperate parents looking for a miracle cure. PANDAS/PITANDS is a medical condition that I think is rapidly becoming understandable and subject to testable hypotheses and evidence-based conclusion. Autism is 20 years ahead of us in name recognition but 20 years behind in scientific understanding!

 

This is not to say that good nutrition, dietary strategies, and other complimentary approaches don't help, but not in the powerful and direct way the proper antibiotic will

 

Dr. T

 

not sure who the "self proclaimed experts" are that you are referring to but that comment sounds a bit like the "expert" tourette syndrome doctors who told me my son would never be ok if I didnt give him the strong antipsychotic drugs and SSRIs for his TS/OCD

 

 

and let's not forget that ACN/Latitudes has always been about promoting alternative and complementary treatments

 

thank goodness for that, and that I found latitudes magazine and then these forums, or my son would likely still have been in crisis! I found the stepping stones here to help bring about meaningful change in his condition, with the help of remarkable physicians who were open minded to the incredible healing that many alternative and complementary treatments can bring about

 

that obviously doesnt negate the essential role of antibiotics and other medications, and that we all agree they are often urgently needed in crisis situations, and save lives literally and figuratively, nor of how important they are for those dealing with PANDAS....... but still, that remark was a bit insensitive considering the purpose of ACN/Latitudes IMHO and especially too as the forums here have always been about members sharing their experiences, information and support for one another, not "experts"

 

I apologize. I forgot where I was.

Eppur si muove.

 

Dr. T

[Pandas_chicago]

No worries. I'm sure you are a hero to the Johnson family and many of us on here. Keep up the good work. I'd love to know if you and Dr. K have compared notes and see if each of you could gain from the others knowledge and experience.

 

Alex

 

Thanks. No, Dr. K and I have not compared notes. I think we are both very busy and the best way to do this may be face-to-face when I come to Chicago in May. This is a complex disease which (like autism) seems to affect no two children in exactly the same way - so the idea of a rigid protocol is probably not in the cards. I hope that, with the think tank experience we can pool everyones experience and come up with some sort of "best practices" statement.

 

Dr. T

 

Dr. T.

 

Why wait until May? We know Dr. K is fairly quick to recommend IVIG. You prefer to try other avenues before proceeding down that path. You and he are probably the leading voices on PANDAS treatment. You care deeply about the patients which is so admirable. With that in mind, it doesn't make sense to delay a meeting of the minds when the two of you are giving confliciting advice. At a minimum you could get a head start on what will be discussed at the think tank.

 

Actually Dr. K is not "fairly quick" to recommend IVIG - my son was treated by doctor K over 5 years ago...the process being antibiotics - , steriod treatment, weekly blood draws doing DNASE testing - after 6 months of his DNASE not going below 950- Dr. K then opted for IVIG - now...being that he has treated hundreds of PANDAS children all over the world - and that he has a huge success rate in treating this kids - I think he has fine tuned his process..meaning that ..my son received IVIG a total of 6 months after onset - if a child comes into his office who has been suffering with pandas for lets say a year or two - ....from onset ...and Dr. K treats him with Steriods...(due to no active strep) - antibiotics won't work - and symptoms still remain ...next logical step is IVIG - which would be 12-24 months from onset...The timeframe of treatment is determined from onset of the disease.

 

IVIG - is VERY safe and is used for MANY MANY other illness -

[dcmom]

pandaschicago- Can you give me an idea of the success of your son's ivig? Did he have ocd or tics? How long did it take for healing? Did ALL of his symptoms resolve, or was he left with any residual issues?

[sf_mom]

I'd just like to add:

 

He has treated my older son with IVIG and is UNWILLING to treat my younger twins with IVIG at this time. Their CaM Kinase scores are 148 and 157, they have low WBC, high lymphocytes, IgG deficiencies, Strep PNEUMOCOCCAL deficiencies and we know they were exposed to RF and one twin took ill with Kawasaki's shortly thereafter. We have tested their underlying immune issue more than once with the same results. Granted he is continuing to watch them very closely and is not against treating them with IVIG in the future but he is attempting to rule OUT any viral issues, etc.

 

He does look at each child's medical history closely prior to making decisions about treatment. He has the most experience treating children with PANDAS/Pitands. If you are making a judgement about treatment for your child based on e-mail correspondence that he was polite enough to respond to without paying a consultation fee and were not prepared to hear his experienced 'opinion' prior to speaking with him........ I HIGHLY recommend you speak him directly TO UNDERSTAND FOR YOURSELF why he might recommend, what he recommends based on YOUR CHILDS SPECIFIC MEDICAL HISTORY.

 

I find I am often clarifying Dr. K positions to individuals that have never spoken to him and are forming opinions/decisions based on hearsay of clipped e-mail responses or parents posting to this forum (that have also never spoken with him). PLEASE FOR YOUR CHILDS SAKE, this is the internet, speak to him personally. It is a MINOR consultation fee based on the potential downside to your child's well being.

 

 

-Wendy

 

 

 

 

Actually Dr. K is not "fairly quick" to recommend IVIG - my son was treated by doctor K over 5 years ago...the process being antibiotics - , steriod treatment, weekly blood draws doing DNASE testing - after 6 months of his DNASE not going below 950- Dr. K then opted for IVIG - now...being that he has treated hundreds of PANDAS children all over the world - and that he has a huge success rate in treating this kids - I think he has fine tuned his process..meaning that ..my son received IVIG a total of 6 months after onset - if a child comes into his office who has been suffering with pandas for lets say a year or two - ....from onset ...and Dr. K treats him with Steriods...(due to no active strep) - antibiotics won't work - and symptoms still remain ...next logical step is IVIG - which would be 12-24 months from onset...The timeframe of treatment is determined from onset of the disease.

 

IVIG - is VERY safe and is used for MANY MANY other illness -