WSJ Article on PANDAS!

[HT's Mom]

My link

 

This was sent to me by the mom that was in the Washington Post, and she got it from an email from Beth Maloney. Posted in the WSJ today, I think.

 

http://online.wsj.com/article/SB10001424052970203518404577094604010074464.html

Edited December 13, 2011 by HT's Mom

[LNN]

The frustrating part of any news article is that it can only touch the tip of the ice berg. But what I like about this piece is that despite the AAP's appalling stance that kids who go suddenly crazy shouldn't be swabbed or given abx, the reporter counters that by quoting Murphy as saying nothing works faster or better than abx on Pandas kids. Without crossing that line of seeming biased, I think the reported did a good job of giving parents encouragement to push for treatment and not just suffer quietly.

 

This reporter has covered other stories about mental health being caused by infection (see Confusing Medical Ailments with Mental Illness). If you like her coverage, please thank her and encourage her to follow up 6-12 months from now so it's not a one time story. You'll see an email link at the bottom of the article. I think it goes to a general mailbox but then gets forwarded to the individual reporters.

[smartyjones]

just wanted to mention that the mom quoted, Susan Dailey, is a HUGE champion and warrior mom for PANDAS and OCD.

 

when my first son was overdue, and finally arrived 12 days late -- we were planning a birth-center birth w/midwife and i was ready to go for pitocin! my acupuncturist said something like, 'you have the strength of all the woman who have gone before you' -- as horrible and lonely as this PANS fight is, and it mostly doesn't seem like it, we really do have the energy of those who have gone before us with us.

 

thank you!!!!

Edited December 13, 2011 by smartyjones

[dcmom]

It is great that this article ran in such a high profile paper like the WSJ. I am sure many families struggling with PANDAS, without knowing what they have, will seek help. I liked that it listed several pandas symptoms, and somewhat painted the pediatricians as crazy for wanting to head to psychotropic meds first, before antibiotics. Tanya Murphy and USF are just a gift to all of us.

 

But, to be honest, I felt a whole bunch of frustration upon reading the article. Not sure why. I guess just wishing that some journalist would actually do a story. Not just skim the surface, and do research that may take and hour or two, but really look at this in depth, so each story is not the same, over and over. I guess that has more to do with the newspaper industry than anything- but I felt like- tell us something new, something insightful. Or, really delve into the symptoms, the presentation. Try really helping SOMEONE. I talked to a local reporter (although chose not to participate in the story for privacy concerns for my kids) and his research was- one psychiatrist, and looking for one family. He had not gotten in touch with the top couple of docs in the state who treat this disorder, he had not talked to any families yet, and he didn't even know Saving Sammy was published (he told me a book about pandas was coming out- I was excited- then he told me the author was from Maine- duh- that book has been out for what? two years?). He had talked to one psych, and told me the story was half done, he just wanted to add one family's story. Really? That research is an embarrassment. He is certainly not qualified to write anything that would be published (although he will). I guess this is why no one actually READS the newspaper much anymore....

 

I guess the excitement, for me, of seeing pandas in the press has worn off a bit. Yeah, it is great to alert new families to the disorder- but what good is that if they cannot get treatment?

 

I am really not feeling that negative today- but just wanted to get this off my chest

[EAMom]

My link

 

This was sent to me by the mom that was in the Washington Post, and she got it from an email from Beth Maloney. Posted in the WSJ today, I think.

 

http://online.wsj.com/article/SB10001424052970203518404577094604010074464.html

 

Yes, hopefully parents will read Dr. Murphy's comments and realize how absurd the AMA stance really is.

 

Also, if you look under "comments" the fifth comment down is by Dr. T. and worth reading.

 

I also appreciate that the article didn't bother to quote or mention the infamous PANDAS naysayers Singer and Kurlan.

[airial95]

I thought the article was very well written - it told both sides of the "controversy" while seeming slightly biased towards our side of the case. LOVE Dr. Murphy's quote - and will tell her that when I see her on the 4th!

 

Dcmom - I understand your frustration - and your local media experience is terrible. But I don't look to these articles to specifically tell me anything I don't already know. Living in the trenches of PANDAS - we're more well informed than your average person on PANDAS - even the reporters!

[LNN]

I guess the excitement, for me, of seeing pandas in the press has worn off a bit. Yeah, it is great to alert new families to the disorder- but what good is that if they cannot get treatment?

 

 

I think you're right - the nature of newspapers is that they can't get into the complexity of something. Even wars are explained in headlines, with no background into motives or complexities. Heck, I can't explain my kids' issues in a few sentences. I can't expect a reporter to be able to either. At best, they can whet your appetite and make you look for more info on your own. (maybe someone should post a link to latitudes on the WSJ comments section?)

 

But what I think is beneficial is that when the WSJ treats this as a legitimate trigger and gives enough quotes from respected institutions, there will be some pediatricians and psychiatrists who will now be willing to give abx a trial, despite the AAP. When IOCDF, Harvard, Columbia and USF all say there's merit, some peds who might have been ambivalent may be willing to take a risk.

 

For those of us who've been thru too many doctors offices, we get jaded. But this kind of press would've been huge for us a few years ago. And I have to believe it will help new families find an easier path. Sometimes change comes via dramatic revolutions and sometimes it comes in baby steps that chip away at "conventional wisdom." We're all making contributions to changing how people view mental health - when we talk to neighbors or doctors or teachers or when we take over restaurants and hotel lobbies for gatherings - sometimes I just think we don't realize it at the time.

[JAG10]

My link

 

This was sent to me by the mom that was in the Washington Post, and she got it from an email from Beth Maloney. Posted in the WSJ today, I think.

 

http://online.wsj.co...4010074464.html

 

Yes, hopefully parents will read Dr. Murphy's comments and realize how absurd the AMA stance really is.

 

Also, if you look under "comments" the fifth comment down is by Dr. T. and worth reading.

 

I also appreciate that the article didn't bother to quote or mention the infamous PANDAS naysayers Singer and Kurlan.

 

 

This was interesting by Dr. T.......

 

3. Because of the plethora of associated triggers of completely different antigenic specificity producing an identical clinical syndrome, the notion that "anti-strep antibodies attack the brain" must be incorrect. Instead, a much better model is PANS is an "alternative fever response", seen in 1-2% of children to common infections most children are exposed to.

[mom md]

I spoke to this reporter and she was VERY interested in this subject. She said she had just a few days to get this out and because it was the first article they were trying to keep it pretty basic. They were trying to keep it to the strep/OCD connection. I was actually pretty impressed she went into the level of detail she did. She said she was trying to talk to Dr. Cunningham and some others but ran out of time. She said she hope to follow-up with this and potentially do more on this in the future. She was fascinated.

[tpotter]

I spoke to this reporter and she was VERY interested in this subject. She said she had just a few days to get this out and because it was the first article they were trying to keep it pretty basic. They were trying to keep it to the strep/OCD connection. I was actually pretty impressed she went into the level of detail she did. She said she was trying to talk to Dr. Cunningham and some others but ran out of time. She said she hope to follow-up with this and potentially do more on this in the future. She was fascinated.

 

 

Personally, I thought the article was exceptional, and responded to the author about that. I think it is more important to keep it simple, but clear, like she did. We all know so much more than non-PANS (or more clearly: "non-PANS diagnosed" people), and as such I think we look too deeply into it. I feel like her purpose was to get the information out so that people might recognize themselves or their children, and followup to get more information. I also believe that the AAP looked completely idiotic in their response, when then said that they don't want parents thinking that it's ok to try to stop the OCD with abx! And, honestly, this author is the first to expose just how idiotic the AAP actually is.

[airial95]

Personally, I thought the article was exceptional, and responded to the author about that. I think it is more important to keep it simple, but clear, like she did. We all know so much more than non-PANS (or more clearly: "non-PANS diagnosed" people), and as such I think we look too deeply into it. I feel like her purpose was to get the information out so that people might recognize themselves or their children, and followup to get more information. I also believe that the AAP looked completely idiotic in their response, when then said that they don't want parents thinking that it's ok to try to stop the OCD with abx! And, honestly, this author is the first to expose just how idiotic the AAP actually is.

 

 

I agree that the AAP had egg on its face saying the psych meds are better for our kids than treating with abx. But at the same time, I also understand their concern that parents look TOO hard for a relatively "easy" solution when their child may not have PANS, and may actually have stratight up OCD or some other issue. It's a philisophical discussion I've had with my VERY PANS friendly pediatrician often - and I don't think it's an easy one - how many PANS treatments do you try and see no improvement before you have to ask if its really what you're dealing with. Unfortunately - like my pediatrician is apt to say - without more research on the proper treatment protocols - it's an impossible question to answer.

 

So while I still think the AAP looked pretty moronic with their stance - I at least can understand somewhat their underlying concern.

[tpotter]

Personally, I thought the article was exceptional, and responded to the author about that. I think it is more important to keep it simple, but clear, like she did. We all know so much more than non-PANS (or more clearly: "non-PANS diagnosed" people), and as such I think we look too deeply into it. I feel like her purpose was to get the information out so that people might recognize themselves or their children, and followup to get more information. I also believe that the AAP looked completely idiotic in their response, when then said that they don't want parents thinking that it's ok to try to stop the OCD with abx! And, honestly, this author is the first to expose just how idiotic the AAP actually is.

 

 

I agree that the AAP had egg on its face saying the psych meds are better for our kids than treating with abx. But at the same time, I also understand their concern that parents look TOO hard for a relatively "easy" solution when their child may not have PANS, and may actually have stratight up OCD or some other issue. It's a philisophical discussion I've had with my VERY PANS friendly pediatrician often - and I don't think it's an easy one - how many PANS treatments do you try and see no improvement before you have to ask if its really what you're dealing with. Unfortunately - like my pediatrician is apt to say - without more research on the proper treatment protocols - it's an impossible question to answer.

 

So while I still think the AAP looked pretty moronic with their stance - I at least can understand somewhat their underlying concern.

 

 

I can also see their underlying concern, but unfortunately most pediatricians are not PANDAS-friendly, and how long do children need to suffer before someone is finally willing to at least try a 10 day dose of abx, and see what happens. Unfortunately, my family, like so many others got caught in the AAP's web to the point that it took 4 years to dx what, honestly, should not have, given the fact that I told dr after dr that it was sudden onset, following a massive sinus infection. I even asked several times about PANDAS, and was told there was no way. I don't think that anyone is questioning being able to accept that it's not PANDAS in the end, but rather the whole thought process of let's go straight to psychotropic meds.

 

Also, when does one say that that psychotropic meds aren't working, and look for another answer (that was the case with my older son, who's "sudden" was at least years before we recognized it, and may actually have been born with it.) This was a child who had constant strep throat, stomach problems, and became violent on psychotropic meds (but their solution was to increase the dose, anyway!)

 

Then again, why shouldn't we first look for an easy solution? Why do we always need to make such a huge deal out of this. Dr. Swedo said that children treated early and aggressively tend to get better. This is one time when it's critical that we "take the chance" on being aggressive. Also, the AAP said that they should only treat when there are obvious signs of strep throat! Strep is found all over the body, and it's not always so obvious.

 

What really disturbs me more than anything is that there are plenty of children and adults who are living with horrible demons, some put away in institutions, who simply needed/need some antibiotics. I know I'm preaching to the choir, but when will the AAP get off their high horse, and realize that they are going completely against "dr., first do no harm!"

[colleenrn]

The following is Dr. T's comment on this article. Interesting.

Colleen

 

Dear Sirs,

 

I am a child neurologist who has devoted the past 12 years of my career to the careful study of this condition. I now run a practice that is virtually "PANDAS only" and have seen approximately a thousacases. I have published in the standard peer-review scientific medium. I can say the following with certainty:

 

1. The term "PANDAS", which (via the terminal "S") has been, by virtue of a 2010 NIMH conference which I attended along with a few dozen interested doctors, been reformulated as "PANS". PANS (Pediatric Acute Neuropsychiatric Syndrome) refers to the acute onset of OCD and/or tics no matter what the cause. PANS is more complex also including urinary issues (including bedwetting), cognitive decline, learning disabilities and other features. The key feature is ACUTE onset - the child "snaps" for now reason.

 

2. PANS has several putative associations, including Group A streptococcal infection and Mycoplasma Pneumoniae. These two triggers are present in 70-80% of cases.

 

3. Because of the plethora of associated triggers of completely different antigenic specificity producing an identical clinical syndrome, the notion that "anti-strep antibodies attack the brain" must be incorrect. Instead, a much better model is PANS is an "alternative fever response", seen in 1-2% of children to common infections most children are exposed to.

 

4. PANS is not rare, it is massively underdiagnosed at present - I estimate that 1-2% of children at a minimum have this condition. It is likely the major cause of motor tics (including Tourette syndrome) in children as well as childhood OCD. Obviously, this is just my hypothesis, but a very well-informed one.

 

5. When a child on the autistic spectrum gets PANS, there is predictable functional regression. Sometimes a high functioning autistic child can suddenly regress (well beyond age 3) and rapidly lose gains that have taken years to acquire. PANS should be high on the differential diagnosis list - as the regression is potentially reversible by standard medical treatments. In fact, I believe all children that are given a diagnosis of autism ought to be evaluated for this condition.

 

6. Most, if not all children with PANS have mild immunodeficiency, and can possibly be identified a "PANS-prone" by a variety of medical tests.

 

7. Adults can and do get PANS, most having had an unrecognized history in childhood.

 

In summary, this common condition is poised to revolutionize our thinking about the genesis of certain mental illnesses and neurological conditions in childhood. Mental illnesses are complex conditions, involving many genes and environmental factors. But people, and especially children, do not just "snap" for a reason, and parents should not just accept explanations of "stress" or "it just happens to some kids" as an explanation.

 

Comments are appreciated!

 

Sincerely yours,

 

Dr. Rosario Trifiletti MD PkD (aka "Dr. T" to the PANS community)

www.neurokidsr.us

pandas.yuku.com

trifmd@gmail.com

[airial95]

 

I can also see their underlying concern, but unfortunately most pediatricians are not PANDAS-friendly, and how long do children need to suffer before someone is finally willing to at least try a 10 day dose of abx, and see what happens. Unfortunately, my family, like so many others got caught in the AAP's web to the point that it took 4 years to dx what, honestly, should not have, given the fact that I told dr after dr that it was sudden onset, following a massive sinus infection. I even asked several times about PANDAS, and was told there was no way. I don't think that anyone is questioning being able to accept that it's not PANDAS in the end, but rather the whole thought process of let's go straight to psychotropic meds.

 

Also, when does one say that that psychotropic meds aren't working, and look for another answer (that was the case with my older son, who's "sudden" was at least years before we recognized it, and may actually have been born with it.) This was a child who had constant strep throat, stomach problems, and became violent on psychotropic meds (but their solution was to increase the dose, anyway!)

 

Then again, why shouldn't we first look for an easy solution? Why do we always need to make such a huge deal out of this. Dr. Swedo said that children treated early and aggressively tend to get better. This is one time when it's critical that we "take the chance" on being aggressive. Also, the AAP said that they should only treat when there are obvious signs of strep throat! Strep is found all over the body, and it's not always so obvious.

 

What really disturbs me more than anything is that there are plenty of children and adults who are living with horrible demons, some put away in institutions, who simply needed/need some antibiotics. I know I'm preaching to the choir, but when will the AAP get off their high horse, and realize that they are going completely against "dr., first do no harm!"

 

Our pediatrician understood the controversy surrounding PANDAS - and even told us both sides of the story when we were first dx. He said the "typical" course of action for our son was to refer him out to a child psych - and they would medicate him. But he said - it may take us a couple of months to get in with the child psych - why not try the abx and see what happens and gave us a 30 day course. There were no signs of strep at the time in my son - negative culture, negative titres, but he had an impetigo infection 6 months prior, and his behavior was sudden a few weeks after that - and got progressively worse.

 

His thought process was that trying the abx first was a "do no harm" kind of approach. (We called it the "spaghetti on the wall" dx - throw something out there to see if it sticks!) If nothing happens - we're no worse off than we were before, if we see any improvement - we may be on to something. He had treated other PANDAS cases before ours (and since) - but has now admitted that ours is the most severe/complex he's had to deal with. He keeps learning as we go. If more pediatricians had his attitude - we'd all be much better off.

[T_Mom]

This article should be a big help to many -- Melinda Beck did an excellent job capturing facts and pertinent quotes.

 

Be sure to see the VIDEO embedded in the online article as well -- very well done!!!