Why is PANDAS so "controversial?"

[mama2alex]

That Doctor should have been saying "YES, this disease exists and is possibly effecting 100's of kids-many of them have been misdiagnosed with something else." She should have been telling parents to be your childs best advocate and to look further when given a dx of OCD &/or tourette's.

 

I took ShaesMom's comment from the Saving Sammy thread, because I wanted to break off a bit and address this subject.

 

It reminded me of something I've been wondering about ever since we first learned that PANDAS exists. Why is this illness so controversial/touchy/political?

 

It's been tumbling around in my brain for weeks and when I saw how carefully the doctor on the Today show chose her words, I started to think more about it. She seemed to have two main messages: This is VERY NEW and doctors don't have all the answers. And this doesn't mean that every child with OCD, Tourettes, behavior problems or autism can just take antibiotics and be better tomorrow. What gives? I can't help wonder WHY she didn't say exactly what ShaesMom says above. That would have made sense within the context of the interview, but she seemed to have her own agenda.

 

Is it the fact that the symptoms are psychiatric? I have wondered if the underlying problem and the reason many in the medical community have such a hard time accepting this is just plain prejudice. Or is it just too much of a paradigm shift for them to see kids with psychiatric symptoms as physically ill? Too anti-Freud? Is this somehow threatening someone's livelihood - maybe psychiatrists? I just don't get it.

 

What do you all think is going on behind the scenes? I would love to hear other's opinions on this.

[peglem]

And why did she mention conditions that were not even part of the presentation...behavior problems, autism? These were not mentioned on the show. Are they in the book, maybe? Hmmm. Good observation. I didn't even think twice about it.

 

You'd think doctors would be say "yipee" about this...something that may help a lot of kids with problems that, frankly have been not very successfully treated in the past.

[ShaesMom]

Maybe on some level if the medical community jumps on board and says that it is possible for a bacterial infection to cause psychiatric illness they are "admitting" (i'm using that term loosely) that they have been wrong for all these years. Maybe their ego's just can't handle it.

 

It would be interesting to know what Beth Maloney thought about Dr. Nancy's comments.

[peglem]

I had thought when I watched the clip, that the doctor on that show was the physician who treated and "recovered" Sammy. They never said that, but it seemed implied. I am assuming from commentary here, that that is not the case? Sorry, I haven't read the book...why didn't they have the physician who treated him on?

 

So, she was like a rebuttal witness?

[ShaesMom]

I had thought when I watched the clip, that the doctor on that show was the physician who treated and "recovered" Sammy. They never said that, but it seemed implied. I am assuming from commentary here, that that is not the case? Sorry, I haven't read the book...why didn't they have the physician who treated him on?

 

So, she was like a rebuttal witness?

 

i think she was the hired NBC medical correspondant. She almost seemed like she was one of the naysayers!

[smartyjones]

I think they don't want to admit it because they just don't know what to do about it. I've been amazed at thinking that as far as "modern medicine" has come, there still are so many things they don't know.

 

It's reminds me of a couple of years ago when my son(non-pandas, now 7) was discussing with my mom, who was the first baby and how did they get here if there were no other people. She told him about Adam and Eve. I was like 'do you really believe that? What do you really think?' And she said, 'well I really don't know.' I said, 'then tell him that'. She said, 'I can't tell him I don't know, he'll never believe me again.'

 

I think the mainstream medical community has trouble admitting there is so much they really don't know about how the body works, health and illness. This is something that brings up so many questions and challenges so many held beliefs that I think many people don't want to open the can of worms. Sad. Once everyone was so sure the world was flat!

[ShaesMom]

I This is something that brings up so many questions and challenges so many held beliefs that I think many people don't want to open the can of worms. Sad. Once everyone was so sure the world was flat!

 

 

And we've been to the Moon! LOL

[pixiesmommy]

We (DH and I) wonder if it has something to do with the fact that there could be a link to vaccines. The theory, from what I gathered from Dr K, is that you are already genetically predisposed, but then something in vaccines can trigger it "on."

 

Having said that, the controversy, according to what I have read online is "actually" about the Autoimmune part of it. There was a reference somewhere that Dr K said he was working w/others to get the name changed and hopefully thereby making it more accepted.

 

I'm sure it's political. Isn't it always??

[Megs_Mom]

I have read the articles inside & out - although not nearly so much as Buster (you are my hero, read your battle on wikipedia today. Thank you!!!), and I kind of get it. It is the result of limited and conflicting research. If we sponsor more research, with larger more controled trials - the controversy will reduce. Before PANDAS, I was against "casual" anti-biotic use, I really fought hard before accepting preventative antibiotics. I was worried, and still do, that her body will someday reject the anti-biotic due to local immunity, and then where will we be? I am not really sure what the results would be if millions of children with OCD, TS, SID, ADHD, Aspergers, etc - suddenly went on long term antibiotics. It's an interesting time and I would guess that the controversy will get hotter before it eases. Up until now, it has been researchers arguing the point, along with a few moms and doctors. Now, parent groups are about to find some power in joining together. Just like the many challenges in the Autism community, we will likely have our challenges as well. However, I'll take that situation over the blatent ignorence and denial that constitute the current situation. Pandas Parents Unite!

[EAMom]

I would say most of the controversy stems from a couple of prominent neurologists (Harvey Singer and Roger Kurlan) and from the fact that nobody has bothered to replicate Swedo's studies....

 

Further controversy comes from Tourettes groups. If NIMH would stop calling PANDAS a "subset of those with OCD and/or tics such as tourettes" that would really help. PANDAS should not be called a subset of tourettes. We need to stop associating the two (although it is possible to have a pandas child misdiagnosed with tourettes.) Nobody on this PANDAS forum goes around saying their kid has tourettes! PANDAS is an infection triggered autoimmune encephalitis which can have symptoms that include OCD and/or tics. That is very different from Tourettes, which is, according to the dsm IV-tr is not caused by the direct physiological effects of medications or other substances, and is not the result of a general medical condition (e.g., seizures, Huntington's disease or postviral encephalitis). Gee..wouldn't an a strep triggered auto-immune dz be considered a "general medical conditon" and therefore exclude pandas from being considered a subset of tourettes??? I did send an e-mail to Sue Swedo at NIMH to this effect. No response.

 

BTW, this is the perception from the Tourette's Advisory Board (shared by most tourettes groups...not on ACN though!) : There are many untested, unproven, and dangerous procedures (such as IVIG and the prophylactic use of antibiotics) being employed, in some situations, outside of medical consensus and protocol, so newcomers might want to research the guidelines of the Tourette Syndrome Association Medical Advisory Board with respect to PANDAS.

 

Yes, and to be honest, I'm sure the medical community is frightened that parents will be demanding those dangerous antibiotics willy nilly for all sorts of behavioral problems. (Oh...but psych. drugs with black box warnings are okay! I don't really get that one.) Oh...and heaven forbid that parents with kids with behavior changes (ocd/tics/odd/adhd) might start demanding throat cultures. Eee gad. We wouldn't ever want to consider a treatment that was outside of medical consensus and protocol, would we???? (Even if they happened to work and the psych. drugs didn't?)

[sf_mom]

I've often wonder if minimizing the use of antibiotics in last 20/30 years has increased the number of individuals that are sick. Remember not too long ago stronger, longer doses and often daily antibiotics were prescribed. Now, it seems you've won the lottery when a prescriptions handed out for a five day course. I understand from Dr. K.... Dr.'s have been trained that way because they are all fearful of Mercer.

[sf_mom]

Hmmmmmm, hate to mention Dr. K again BUT he seems to think 'Tourette's and OCD' are symptoms of PANDAS. WOW, that a strong statement and I feel odd posting it here but in my heart I too believe it to be true. He mentioned going back and studying 'Tourette's' original case studies.... He's fairly certain it was PANDAS.

 

 

I would say most of the controversy stems from a couple of prominent neurologists (Harvey Singer and Roger Kurlan) and from the fact that nobody has bothered to replicate Swedo's studies....

 

Further controversy comes from Tourettes groups. If NIMH would stop calling PANDAS a "subset of those with OCD and/or tics such as tourettes" that would really help. PANDAS should not be called a subset of tourettes. We need to stop associating the two (although it is possible to have a pandas child misdiagnosed with tourettes.) Nobody on this PANDAS forum goes around saying their kid has tourettes! PANDAS is an infection triggered autoimmune encephalitis which can have symptoms that include OCD and/or tics. That is very different from Tourettes, which is, according to the dsm IV-tr is not caused by the direct physiological effects of medications or other substances, and is not the result of a general medical condition (e.g., seizures, Huntington's disease or postviral encephalitis). Gee..wouldn't an a strep triggered auto-immune dz be considered a "general medical conditon" and therefore exclude pandas from being considered a subset of tourettes??? I did send an e-mail to Sue Swedo at NIMH to this effect. No response.

 

BTW, this is the perception from the Tourette's Advisory Board (shared by most tourettes groups...not on ACN though!) : There are many untested, unproven, and dangerous procedures (such as IVIG and the prophylactic use of antibiotics) being employed, in some situations, outside of medical consensus and protocol, so newcomers might want to research the guidelines of the Tourette Syndrome Association Medical Advisory Board with respect to PANDAS.

 

Yes, and to be honest, I'm sure the medical community is frightened that parents will be demanding those dangerous antibiotics willy nilly for all sorts of behavioral problems. (Oh...but psych. drugs with black box warnings are okay! I don't really get that one.) Oh...and heaven forbid that parents with kids with behavior changes (ocd/tics/odd/adhd) might start demanding throat cultures. Eee gad. We wouldn't ever want to consider a treatment that was outside of medical consensus and protocol, would we???? (Even if they happened to work and the psych. drugs didn't?)

[nevergiveup]

Hey this is nothing new guys. How about fibromyalgia, 10 years ago doctors laughed at this disease, including my father, uncles, cousins, and grandfather. (Whom are all physicians). Now there is a drug out for a disease that doesn't exist. I remember when I was younger and could die if I ate a peanut and many adults would ask if it was all in my head. Now there are lunch tables at school that are labeled peanut free. Much awareness has happened in regards to allergies and asthma. My grandfather was one of the founders of allergy and immunology. I recall many strangers in public places asking him if allergies were real. Even with a long history in my family in medicine, with two leading allergists and immunologists, one emergency medicine doctor (who has seen a SC case ) one pediatrician, one forensic psychiatrist, and one child psychiatrist whom all work for major universities in research (and all suffer from the typical doctor god syndrome assuming the patient is rather naive), my daughter (who is loved so dearly by all of the physicians above ) was admitted to the hospital for severe OCD and not eating for 9 days and not a ONE mentioned PANDAS. She quickly went into remission and was symptom free 2 years and then suffered again an overnight attack and was diagnosed with SC. Later after an ECCO and blood tests she was passed on to Rheumotolgy because it may have been Lupus. Afterwards PANDAS was considered. Now after Cunningham tests and again after a 2 year remission she again had a horrible attack overnight and received IVIG. There has been limited support for her medical care ( from her own grandad) and an almost scary silence in regards to any discussion of it. Just questions to me about how I shouldn't read the internet anymore. The researchers stand by the researchers and Singer trumps Swedo. The tide is turning with the new animal model and with new PR, new studies will begin soon. Its a long haul, look at the poor untreated victims of the fibromyalgia diagnosis they were also considered just nuts. Don't let the controversy stop you from following your gut and pushing for help for your kids. My daughter was first diagnosed 7 years ago. No help existed back then. With all the famous physicians in my family I was always use to getting the best care and best consults. Didn't help this time it actually hurt. I never looked outside my closed circle for help. (My father works with Hopkins so you can only guess what type of info he was getting) If I had only just done my own research I could have helped her. Things are moving the right way now, I hope!!!! Cunninghams tests may change all those hesitant to treat! (But it may unfortunately never repair the controversy I now have in my heart about my family.)

[Kayanne]

I've often wonder if minimizing the use of antibiotics in last 20/30 years has increased the number of individuals that are sick. Remember not too long ago stronger, longer doses and often daily antibiotics were prescribed. Now, it seems you've won the lottery when a prescriptions handed out for a five day course. I understand from Dr. K.... Dr.'s have been trained that way because they are all fearful of Mercer.

 

We must think so much alike....that is what I have been thinking for weeks now...I'm trying to compose my thoughts a little better to start a new tread about it...

[Stephanie2]

I have always thought that it is so controversial because much of the diagnosis depends upon parental feedback. I mean, a child doesn't have PANDAS unless he is "falling apart" which is up to the parents to decide. I have always found (and I have TONS of experience here as both of my children have multiple health problems) that it is very hard to get a physician to respect my observations regarding my childrens' health and their response to certain meds and treatments. Take for example how my allergist responded when I took my son off Singulair and Zyrtec and he did a 180 in terms of behavior. The allergist said, oh he's probably just having a good week. I get this kind of reaction all the time! And recently when I took my son in to see the pediatrician (who BTW accepts the PANDAS dx). After 2 rounds of antibiotics his PANDAS keeps coming back, so I asked her for another abx rx until I can get into see Latimer next month. She said, "oh, I get cranky when I am sick, too. He's probably just cranky because he's not 100% yet". I didn't even bother to explain that "cranky" is an understatement and that he is acting very ticcy and ocd. She gave me the rx, so I was happy.

 

I get so TIRED of being doubted by the dr.'s, but that is what makes me so APPRECIATIVE when I find one who listens to me and works with me (example our DAN doctor in Miami and hopefully, Latimer). It's such a waste of time and aggravation to have a dr that doesn't respect our observations!

 

I've often wonder if minimizing the use of antibiotics in last 20/30 years has increased the number of individuals that are sick. Remember not too long ago stronger, longer doses and often daily antibiotics were prescribed. Now, it seems you've won the lottery when a prescriptions handed out for a five day course. I understand from Dr. K.... Dr.'s have been trained that way because they are all fearful of Mercer.

 

We must think so much alike....that is what I have been thinking for weeks now...I'm trying to compose my thoughts a little better to start a new tread about it...