EAMom
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EAMom reacted to MomWithOCDSon in Harvey Singers new article
I have to say, I am always so impressed (NOT!) when a paper authored by someone (in this case, Singer), constantly refers back to previous papers by the self-same author (Singer), as though those references offer some sort of impartial support or corroboration!
ChrissyD was kind enough to forward me a full copy, and I count no less than 9 such references. Reminds me of a similar nay-sayer paper authored by Stanford Shulman in which he repeatedly quoted himself from previous papers.
I guess the pressure to publish is such that these guys have to keep doing it, even if they have nothing new to say.
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EAMom reacted to MomWithOCDSon in Harvey Singers new article
Oh, and our friend Roger Kurlan is also in on this latest nugget of wisdom; he's accredited as the "Principal Investigator" of the "Tourette Syndrome Study Group."
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EAMom reacted to ChrissyD in Harvey Singers new article
Yes eamom it is the same group of kids. So once again they are studying the same non PANDAS kids.
If you or anyone wants a copy of the full article, message me your email and I'll forward it.
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EAMom reacted to JoyBop in NIH IVIG PANDAS study is STILL OPEN
Wow! That was interesting! We actually just enrolled in a new study at the NIH. We are going in early January for two full days of testing. It does not include treatment but its intent is diagnostic and includes natural history of childhood onset of OCD. I had responded to the family study but found out that that particular study is not yet enrolling. We feel very fortunate to have this experience.
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EAMom reacted to MomWithOCDSon in Harvey Singers new article
Amen, Smarty!
If this guy spent just one HALF the energy he expends on refuting PANDAS on coming up with verifiable answers, then he'd earn some respect from me.
It baffles me, the sheer waste on trying to shore up one's own dated, out-researched and poorly supported position!
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EAMom reacted to lfran in Harvey Singers new article
n refers to the number of subjects in each group
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EAMom got a reaction from thirteen in New Member feeling so alone
Hi Thirteen,
in the future you should post under PANS/PANDAS (Lyme) as more people will notice your post that way.
(The copy function on my computer isn't working right, but I will try to post more info. later. )
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EAMom got a reaction from philamom in Conference
There is a PANDAS parent blog called "PANS Life" with a good summary of some of the presentations. It is called "The Conference: part 1" so I assume there is more to come!
http://www.panslife.com/pans-life-journey/2013/11/14/the-conference-part-1.html
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EAMom reacted to cara615 in Conference
This is all such great information! my boys are twins (almost 6). one has had motor and vocal tics with mild OCD since about 3 years old. Looking back, I do not know if any of his "flares" were due to infection. He has had strep 2x in his young life. However, the flare that got us a diagnosis of TS/OCD/ADHD was in May. He was extremely severe. I did not know about PANDAS at that time enough to get a throat culture. Instead I just addressed his diet and methylation with a homeopathic MD. I was able to get his tics and behaviors down 99%.
Fast forward to Nov. His tics spiked over the course of a week. I got him a STREP test and it was positive. he had no symptoms. He is on amoxicillan now and we may take some blood to determine how to proceed. He also had a stool test done that we are waiting on results for. Should be three weeks more for that and then we can see what types of bacteria are in his gut.
my question is: since I suspect one of my twins to have PANDAS, should I suspect my other son to have it too? my other son has no tics, maybe some OCD (not sure if its just who he is) and no other symptoms. He is well adjusted at school.
I think I am going to get my other son a STREP test this weekend too. Just to see.....
Lastly, the next conference in Atlanta! I live in Atlanta!
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EAMom got a reaction from nicklemama in Conference
There is a PANDAS parent blog called "PANS Life" with a good summary of some of the presentations. It is called "The Conference: part 1" so I assume there is more to come!
http://www.panslife.com/pans-life-journey/2013/11/14/the-conference-part-1.html
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EAMom reacted to nicklemama in Conference
Dr Agalliu's paper is very soon. I think they actually said any day now.
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EAMom reacted to norcalmom in Conference
Did Dr Agaliu say anything about when he may publish something? Or Cunningham? The past several conferences (several years worth)) they were in the verge if publishing - and it's been so long. It's so frustrating. Dr A has only been working pandas for 2(?) years or so-about .but Dr C has had thousands of blood samples from years of research.
I am the biggest fan if those two- the raw science and data is what will ultimately lead to acceptance and the best, most targeted, treatments, but they need to get it out there to the medical community.
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EAMom reacted to Dedee in Conference
It was an awesome conference! Had some great conversations with some of the researchers and speakers. It was also a very emotional and bonding experience. My husband got to go with me and I think one of the best things he brought home was a validation that our daughter does indeed have lyme. There was never any doubt from me but I think he has always held back some reservations until after the Lyme presentation. Not anymore. It was good for him to hear some of the things he has always heard from me also come from other Mom's and from the speakers. I am so glad we went.
Dedee
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EAMom reacted to kimballot in Conference
Her talk was more about lyme than specifically about PANS reactions with lyme and coinfections. Lyme was discussed when other doctors talked about PANS as opposed to pure PANDAS and there was discussion about lyme, mycoplasma, mono, and other infections causing an exacerbation.
I think the tricky part for folks with lyme and PANS is to sort out which symptoms are directly from lyme and which may be the result of an autoimmune (misdirected antibody) response in the brain.
One think that I came away with is that chronic infection is very different from acute infection in the way the immune system reacts, and that the kids who are caught early with their first Strep-based exacerbation are likely NOT having the same level of immune system changes that kids with chronic infection are experiencing.
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EAMom reacted to nicklemama in Conference
The doctors and researchers sat through all the presentations on Sat and were there until the later part of Sun, when the presentations were very parent directed. I am so glad I went. There are no words to describe how powerful it was to be there. I managed to have personal conversations with Dr Swedo, Dr Cunningham, Dr T, Dr Agalliu, his post doc research assistant Erica, Dr Latimer, Beth Maloney, Dr Hubbuch (LLMD), and Diana Pohlman. Everyone was very friendly and welcoming. No big egos. All were very open to conversation. And I met some PANDAS Parents. Loved it.
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EAMom reacted to Orion in Conference
In one of the Q&A panel discussions, Dr. Cunningham was asked of the 1000 subjects in her study, how many had a strep infection? Mycoplasma Pneumoniae? Lyme? She answered that only 45% had strep, the remaining 55% had Lyme, Myco Pn, staph etc.
The Q&A moderator quickly followed up with asking the audience, how many here have Lyme [as part of the problem]?, and a good 60-70% raised their hands. (That's what it looked like from where I was sitting).
In any event, the audience response was so strikingly large, that some of the academics on stage for the Q&A were visibly startled.
~Orion
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EAMom reacted to rowingmom in PANS/PANDA with negative ASO titer? So desperate!
Please don't assume that PANS/PANDAS is always caused by strep. If the tests don't point to strep look elsewhere: bartonella, mycoplasma, viruses.
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EAMom got a reaction from MissionMama in PANS/PANDA with negative ASO titer? So desperate!
Also bear in mind that if you check titers "too early" or "too late" then you may miss the elevation of a past or current strep infection. Ideally you should check titers at onset of symptoms (to get a baseline) and again 4-6 weeks later to see if there is a RISE in titers.
A single elevated titer doesn't tell you if that infection is current or was from a year ago (since in some people, titers can stay up for quite a while).
If you drew titers after 1-2 weeks of symptoms, that may have been too early for the body to respond with a rise, so I would recheck in 1 mo.
Also some kids have a very low baseline, so even if they do get a titer rise, it doesn't exceed the upper limit of normal. So, it looks "normal" when in reality it is elevated for that particular child.
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EAMom got a reaction from MissionMama in PANS/PANDA with negative ASO titer? So desperate!
Also, don't confuse Dr. Margo Thienemann (pediatric psych. in No. CA) with Dr. Trifiletti (pediatric neurologist in NJ). Usually when people say Dr. T. they mean Dr. Trifiletti.
Usually I refer to Dr. Thienemann as "Margo T." (easier to spell for one thing).
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EAMom got a reaction from MissionMama in PANS/PANDA with negative ASO titer? So desperate!
BTW....you can get the throat cultures right away, while you are waiting to see specialists etc. That is something your family doctor can do.
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EAMom got a reaction from MissionMama in PANS/PANDA with negative ASO titer? So desperate!
HI MissionMama,
I haven't read all the responses carefully.
But....
#1 did you get a throat culture on your child? Did you also throat culture family members? My PANDAS dd never got elevated strep titers but both she and her sister were positive on throat cultures. If your child (ren) are positive (or you are, or dh) you need to know and need to clear them (with antibiotics). There is a lot of "stealth" strep around which doesn't have typical symptoms (sore throat, fever).
Check out this thread http://www.latitudes.org/forums/index.php?showtopic=16476
ASO titers are a pretty inexact way of telling if and when somebody had strep, however, since you already had ASO titers (did you do anti-dnse b titers too?) you should repeat titers in about 4-6 weeks to see if there is a RISE in titers.
That said, strep isn't the only infection that can trigger sudden onset OCD. Mycoplasma and Lyme are others.
As far as No. CA docs. Here is a list of doctors that could be helpful. http://pandasnetwork.org/resources/providers/provider-list/ I would probably recommend Dr. Schweig over Margo T. Margo is great but being a psych, she would have to refer you to Stanford (PANS clinic which doesn't take out of state and has a long wait list) to get labs and check for infection etc. Dr. Schweig can get you in sooner and will do all the testing (and more) that Stanford would do.
I think Dr. K is too far to go from the West Coast and personally, think Dr. Schweig will do a better job of looking for underlying issues aside from just strep.
BTW, strep is not a virus. It is a bacteria (which needs antibiotics). I just wanted to clarify since you will be probably be dealing with many doctors in your quest for treatment and it's good get that straight if you want a better chance of being taken seriously! (Note: viruses can trigger exacerbations in PANDAS kids, esp once the "wheels" of autoimmunity have already started with a prior strep infection. Some of the "better" PANDAS docs will know to check for certain viral titers as well .Some of these kids with evidence of viruses on blood work have been successfully treated with anti-virals. For my dd, H1N1 and fifth's both triggered subsequent exacerbations a couple of years after PANDAS became full blown with strep.)
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EAMom reacted to Mayzoo in PANS/PANDA with negative ASO titer? So desperate!
My daughter's ASO (6) and anti-Dnase (86) are always low even when she was in the middle of a 60 day strep episode. Further investigation showed she is immune compromised, so she does not make antibodies the way she should.
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EAMom reacted to nicklemama in Alzheimers/PANS Linked?
The problem with testing for infections is it would force doctors to start prescribing more antibiotics, which are harder to come by than crack and that might send them over the edge with their current mindset towards less antibiotics.
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EAMom reacted to MMC in 19 yr old loses ability to write for one hour..what do you think?
This sounds similiar to what happened to the reporter, Serene Branson, when she was on the air reporting from the Grammies a couple of years ago. Its on youtube. Although, it affected her speech instead of writing. She was just speaking gibberish. They thought she had a stroke, but it was diagnosed as a complex migraine. Any migraine history with you or her?
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EAMom reacted to rowingmom in Constant head ache. Lyme?
Headaches are also common with bartonella and babesia infections.