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An email update form Diana Pohlman (PANDAS Network)...

 

 

"February 18, 2010

 

 

 

Dear Parents,

 

 

 

I am writing on behalf of the PANDAS Network, www.pandasnetwork.org. There has been far more contact with the website than I had anticipated – about 400 families – since July 2009. I had anticipated maybe, maybe, 100 emails by January. The folks that have reached out are some recovered cases, however, most are new onset cases. Since Beth Maloney’s book came out, “Saving Sammy”, there are more cases of older children who suspect long time undiagnosed PANDAS. The starting of this website and the release of this book were sheer coincidence.

 

 

 

Next week I’ll send out an email regarding how some of the families are reporting progress in healing. I’ll just let you know now – my son is symptom free – after a 2 year struggle. So hang in there folks. There is a lot of confusion on the Latitudes forum – so I’ll try to not complicate things further.

 

 

 

Background of PANDASNetwork

 

I wanted to be clear that this website was created out of our (a few parents and a few docs) desperate desire to communicate the sudden onset of PANDAS to doctors in 2007. About 20 families also had a similar sudden onset in 2007 and we banded together via the Latitudes forum and then shared our stories with a few caring doctors. There was no, and is not yet, sophisticated mechanisms put in place to create a fully functioning non-profit or volunteer base. Several parents are discussing how best to do this. We all work or our kids are still ill…..so it takes time. This brings me to the next part of this note – trying to create a knowledgeable support network for our children and newcomers.

 

 

 

Meeting with Dr. Swedo and others Last Month January 2010

 

Dr. Sue Swedo, Chief, Pediatrics and Developmental Neuropsychiatry at the NIMH, the doctor who named this syndrome, agreed to meet with me for an informal meeting in Washington D.C. about 2 weeks ago. Dr. Paul Grant, also from the NIMH attended, Dr. James Leckman of Yale Child Studies Center and for the latter portion of the meeting, Dr. Beth Latimer, Neurologist. Dr. Leckman, in particular, travelled many hours from CT to attend and show his support of all of us.

 

 

 

First,please understand, Dr. Swedo and the others are deeply moved by our children’s illness. They are working very hard to create a cohesive diagnostic criteria for PANDAS. They are also working hard to champion funding for a study on PANDAS that will lay to rest the debate of whether this illness exists or not. When we spoke they were often moved to tears relating stories of families struggling with PANDAS.

 

 

 

Parents – please clearly understand – these doctors and several others not named here -- understand our growing number and absolutely are trying to find a way to help our children. To that end, Dr. Swedo and others will be speaking at the Autism One Conference this May in Chicago http://www.autismone.org/content/world-changes-may

 

 

 

[separate from this meeting, Dr. Kovacevic said a paper documenting his PANDAS patients should be published in the springtime. When I learn where it will be published, I’ll let you know.]

 

 

 

Brief Notes of the Meeting

 

 

 

Dr. Swedo recently wrote a Rebuttal Letter to the Editor in Neurology Magazine in response to a recent study by Schrag, et al –http://www.neurology.org/cgi/content/abstract/WNL.0b013e3181bd10fdv1. Her response in support of PANDAS should be published in the next few months.

 

 

We discussed the fact that better guidelines for PANDAS need to be created. Identifying this illness at its onset is far more than sudden onset of OCD or tics.

 

 

Dr. Swedo was very clear that if it is a PANDAS syndrome then the child should respond to antibiotics within a few days – not a full cessation but a positive improvement. I explained that many of us see early, subtle improvement but convincing the doctors to keep us ON antibiotics, which is usually needed in the first month or not more, was difficult.

 

 

I expressed that many of the children, including mine, though initially were launched into a PANDAS episode by strep – as the child is convalescing – they become reactive to other viruses. She said that PANDAS in her mind was simple reaction to STREP ONLY. She then said another definition is being worked up for this reaction – PAND – pediatric autoimmune neurological disease wherein viruses also activate symptoms.

 

 

We talked a lot about a hoped for study on PANDAS through the NIMH. There were no specifics given but I do know they are working on finding a way to get this going.

 

 

I told Swedo that post-treatment guidelines needed to be worked on, i.e, family members often have undetected strep; immunizations, flu shots and tooth extractions are activating the convalescing child.

 

 

We talked about a certain serotype of strep (maybe M1 or M18?) seems to be harder to kill off with the antibiotics and that there seem to be some areas of the country that has more resistant PANDAS cases. No one is certain. There are reports of one child in a family getting PANDAS and shortly thereafter a second child developing PANDAS. They are not sure what to make of this yet – genetic coincidence or strep serotype.

 

 

Swedo and Grant know that we have gathered approx. 200 case stories of PANDAS and are trying to find a way to help us use those stories in a productive way. Swedo has herself has heard many similar stories. I told them it was urgent that if they want to stop the onslaught of inaccurate reporting on PANDAS that they needed to help us find a way to write A SCIENTIFICALLY BASED BOOK. The sensationalized stories are not enough to convince the medical community. At this point, all the doctors are pushed to the maximum with their other professional responsibilities – I’ll keep prodding to find a way help them get the word out to the medical community. I just saw a clip of the movie, Extraordinary Measures, and it reminded me of what hand-to-hand struggle these PANDAS researchers are going through to prove our childrens’ illnesses and how much we parents need to keep pushing for help.

 

 

Lastly, during the summer many PANDAS researchers will gather at the NIMH to discuss their findings. Something that has not happened before. Certain doctors in Denmark are very interested in Dr. Cunningham’s work on CamKinase increase in PANDAS children. The Columbia “mouse study” used her work to induce PANDAS in the mice. Her work is very important and I hope any non-profit we come up with…..will help fund her lab.

 

 

 

 

Hope this note was encouraging. The doctors really feel it is not long off before PANDAS will be understood. They expressed a great deal sadness about the tremendous financial strain some of this medical treatment causes us let alone the emotional trauma.

 

 

 

Thanks and wishing you well.

 

 

 

Diana Pohlman

 

California"

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Hmmm.... this is an interesting turn-a-round from what Swedo said in her first 50 cases article:

 

I expressed that many of the children, including mine, though initially were launched into a PANDAS episode by strep – as the child is convalescing – they become reactive to other viruses. She said that PANDAS in her mind was simple reaction to STREP ONLY. She then said another definition is being worked up for this reaction – PAND – pediatric autoimmune neurological disease wherein viruses also activate symptoms.

 

vs. (in the first 50 cases article)

 

http://intramural.nimh.nih.gov/pdn/pubs/pub-3.pdf

Two clinical notes should be made. First, not all

symptom exacerbations were preceded by GABHS infections;

viral infections or other illnesses could also

trigger symptom exacerbations. This is in keeping with

the known models of immune responsivity—primary

responses are specific (e.g., directed against a particular

epitope on the GABHS), while secondary responses

are more generalized. Thus, the lack of evidence for a

preceding strep infection in a particular episode does

not preclude the diagnosis of PANDAS.

 

So would a child that reacts to both strep and viruses be "PANDAS/PAND" and a child that only reacts to strep be "PANDAS"? It seems to me that PANDAS/PAND is just a more severe form of PANDAS. I wonder how many PANDAS kids ONLY react to strep and NOT viruses (or allergies, or vaccines) once PANDAS is in full-swing (meaning those kids that don't get full-remission with a simple course of antibiotics)? Originally, I didn't think my dd reacted to other triggers, but as her dz became more "chronic" (many months after her huge exacerbation) we realized that wasn't the case, and that she definitely did react to viruses (fifth's, h1n1).

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Diana, once again: U ROCK!!! Don't know where my family would be right now if not for all your guidance over the past few years... probably in adjoining padded rooms. ^_^

 

Thanks so much for going the extra (few thousand) miles to champion the cause of PANDAS kids and families. Hope you're getting some rest and relaxation once in a while!

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Another hmmm.

 

Dr. Swedo was very clear that if it is a PANDAS syndrome then the child should respond to antibiotics within a few days – not a full cessation but a positive improvement. I explained that many of us see early, subtle improvement but convincing the doctors to keep us ON antibiotics, which is usually needed in the first month or not more, was difficult.

 

Is that assuming the correct antibiotic is given at a high enough dose? My feeling is that these "mild cases" (when PANDAS is caugh early on) this may be the case. And sometimes the improvement may be VERY VERY subtle (eg a slight improvment in mood)...nothing obvious.

 

I just don't want a scenario where someone concludes their child is not PANDAS b/c tics don't diminish after a few days on amoxicillin!

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I was wondering the same, EAMom about other triggers. For those who believe their children react to strep only, follow up questions are needed. Has your child had a virus since the strep triggered exacerbation? How many strep triggered exacerbations have occurred? I also wonder if they realize their child is having a reaction to other triggers. For my son they are much more mild than the strep triggered ones, but there was a change in him. I'd have to review my journal, but I don't think my son had viral triggered setbacks until after his third strep triggered excaerbation.

 

But, then, I also look at my son and he's starting to NOT really react to viral triggers anymore. Or they are really easing up. But I know darn well that if strep comes back all heck will break loose all over again.

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This is interesting. Remember the poll I did last week or so? Only about 5% said that their kids responded only to Strep! Something like 37% said that they responded even to immune challenges beyond infections!

 

 

An email update form Diana Pohlman (PANDAS Network)...

 

 

"February 18, 2010

 

 

 

Dear Parents,

 

 

 

I am writing on behalf of the PANDAS Network, www.pandasnetwork.org. There has been far more contact with the website than I had anticipated – about 400 families – since July 2009. I had anticipated maybe, maybe, 100 emails by January. The folks that have reached out are some recovered cases, however, most are new onset cases. Since Beth Maloney’s book came out, “Saving Sammy”, there are more cases of older children who suspect long time undiagnosed PANDAS. The starting of this website and the release of this book were sheer coincidence.

 

 

 

Next week I’ll send out an email regarding how some of the families are reporting progress in healing. I’ll just let you know now – my son is symptom free – after a 2 year struggle. So hang in there folks. There is a lot of confusion on the Latitudes forum – so I’ll try to not complicate things further.

 

 

 

Background of PANDASNetwork

 

I wanted to be clear that this website was created out of our (a few parents and a few docs) desperate desire to communicate the sudden onset of PANDAS to doctors in 2007. About 20 families also had a similar sudden onset in 2007 and we banded together via the Latitudes forum and then shared our stories with a few caring doctors. There was no, and is not yet, sophisticated mechanisms put in place to create a fully functioning non-profit or volunteer base. Several parents are discussing how best to do this. We all work or our kids are still ill…..so it takes time. This brings me to the next part of this note – trying to create a knowledgeable support network for our children and newcomers.

 

 

 

Meeting with Dr. Swedo and others Last Month January 2010

 

Dr. Sue Swedo, Chief, Pediatrics and Developmental Neuropsychiatry at the NIMH, the doctor who named this syndrome, agreed to meet with me for an informal meeting in Washington D.C. about 2 weeks ago. Dr. Paul Grant, also from the NIMH attended, Dr. James Leckman of Yale Child Studies Center and for the latter portion of the meeting, Dr. Beth Latimer, Neurologist. Dr. Leckman, in particular, travelled many hours from CT to attend and show his support of all of us.

 

 

 

First,please understand, Dr. Swedo and the others are deeply moved by our children’s illness. They are working very hard to create a cohesive diagnostic criteria for PANDAS. They are also working hard to champion funding for a study on PANDAS that will lay to rest the debate of whether this illness exists or not. When we spoke they were often moved to tears relating stories of families struggling with PANDAS.

 

 

 

Parents – please clearly understand – these doctors and several others not named here -- understand our growing number and absolutely are trying to find a way to help our children. To that end, Dr. Swedo and others will be speaking at the Autism One Conference this May in Chicago http://www.autismone.org/content/world-changes-may

 

 

 

[separate from this meeting, Dr. Kovacevic said a paper documenting his PANDAS patients should be published in the springtime. When I learn where it will be published, I’ll let you know.]

 

 

 

Brief Notes of the Meeting

 

 

 

Dr. Swedo recently wrote a Rebuttal Letter to the Editor in Neurology Magazine in response to a recent study by Schrag, et al –http://www.neurology.org/cgi/content/abstract/WNL.0b013e3181bd10fdv1. Her response in support of PANDAS should be published in the next few months.

 

 

We discussed the fact that better guidelines for PANDAS need to be created. Identifying this illness at its onset is far more than sudden onset of OCD or tics.

 

 

Dr. Swedo was very clear that if it is a PANDAS syndrome then the child should respond to antibiotics within a few days – not a full cessation but a positive improvement. I explained that many of us see early, subtle improvement but convincing the doctors to keep us ON antibiotics, which is usually needed in the first month or not more, was difficult.

 

 

I expressed that many of the children, including mine, though initially were launched into a PANDAS episode by strep – as the child is convalescing – they become reactive to other viruses. She said that PANDAS in her mind was simple reaction to STREP ONLY. She then said another definition is being worked up for this reaction – PAND – pediatric autoimmune neurological disease wherein viruses also activate symptoms.

 

 

We talked a lot about a hoped for study on PANDAS through the NIMH. There were no specifics given but I do know they are working on finding a way to get this going.

 

 

I told Swedo that post-treatment guidelines needed to be worked on, i.e, family members often have undetected strep; immunizations, flu shots and tooth extractions are activating the convalescing child.

 

 

We talked about a certain serotype of strep (maybe M1 or M18?) seems to be harder to kill off with the antibiotics and that there seem to be some areas of the country that has more resistant PANDAS cases. No one is certain. There are reports of one child in a family getting PANDAS and shortly thereafter a second child developing PANDAS. They are not sure what to make of this yet – genetic coincidence or strep serotype.

 

 

Swedo and Grant know that we have gathered approx. 200 case stories of PANDAS and are trying to find a way to help us use those stories in a productive way. Swedo has herself has heard many similar stories. I told them it was urgent that if they want to stop the onslaught of inaccurate reporting on PANDAS that they needed to help us find a way to write A SCIENTIFICALLY BASED BOOK. The sensationalized stories are not enough to convince the medical community. At this point, all the doctors are pushed to the maximum with their other professional responsibilities – I’ll keep prodding to find a way help them get the word out to the medical community. I just saw a clip of the movie, Extraordinary Measures, and it reminded me of what hand-to-hand struggle these PANDAS researchers are going through to prove our childrens’ illnesses and how much we parents need to keep pushing for help.

 

 

Lastly, during the summer many PANDAS researchers will gather at the NIMH to discuss their findings. Something that has not happened before. Certain doctors in Denmark are very interested in Dr. Cunningham’s work on CamKinase increase in PANDAS children. The Columbia “mouse study” used her work to induce PANDAS in the mice. Her work is very important and I hope any non-profit we come up with…..will help fund her lab.

 

 

 

 

Hope this note was encouraging. The doctors really feel it is not long off before PANDAS will be understood. They expressed a great deal sadness about the tremendous financial strain some of this medical treatment causes us let alone the emotional trauma.

 

 

 

Thanks and wishing you well.

 

 

 

Diana Pohlman

 

California"

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Thank you for posting this. I am in tears. It is an indescribable feeling to hear this kind of an upate when we are 7 years into our fight with PANDAS.

 

I sent a message to Swedo about our story about a year and a half ago. While she did respond the very next day, I was told to consider following standard OCD treatment for our son unless we could show a positive strep test at time of first symptoms. My gut told me that was not the answer. We all know it is difficult to show positive strep test at sign of first symptoms, especially when doctors or parents were not considering strep with these symptoms 7 years ago.

 

This message makes me believe that someday I will be able to forget the strange looks I have gotten from family, friends and doctors over the past 7 years as we have tried to heal our son. Someday ... hopefully! ^_^

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I was told to consider following standard OCD treatment for our son unless we could show a positive strep test at time of first symptoms. My gut told me that was not the answer. We all know it is difficult to show positive strep test at sign of first symptoms, especially when doctors or parents were not considering strep with these symptoms 7 years ago.

 

yup...especially when illnesses are presumed viral, so your doc doesn't bother to run a strep test....or when your child doesn't show any strep symptoms (fever etc) and only behavior changes, so your doc doesn't bother (or know) to run strep test.

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Mine ds 6 reacted, my ds3 did not...but then, he was only 2 at the time so I might not have picked it up.

 

Yes, and some viruses are bigger triggers than others. I'm curious...is there anyone who's PANDAS kid has had H1N1 and NOT reacted?

 

Yup, it seems like H1N1 made our older kid sicker (and she was sick longer) than our younger...so that may be part of the issue. Also, if your 2 year-old is PANDAS, it may be early enough in his illness where he's not reacting to non-strep illnesses...YET. Or...since 2 year olds are tricky to read (they can normally be a bit erratic) it might be difficult to deterimine what is PANDAS and what is the "terrible twos".

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