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LNN

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Posts posted by LNN

  1. Now, I or my DH have to write the words in the books for him because he is afraid to write them wrong. Then we have to re read them to him twice so he knows WE wrote the words correctly. If it's wrong, he'll rip it up in a fit of anger.

     

    His new thing is and I know this is PANDAS - he HAS to draw one picture of 8 small superheros before bed every night. I mean, I tell him it's bedtime and he will RUN away from me, grab a paper and crayon and go for it. It doesn't matter what they look like or if they are just scribbles, as long as it's done. He can't stop to do anything until those 8 superheros are drawn - last night DH was waiting for him to get in the shower and he ended up waiting quite a while because they had to be done properly. We've come to accept that because it doesn't take very long and at this point, anything I can do to keep peace at bedtime... Always worried about it expanding though :)

     

    This behavior might be caused by Pandas, but the behavior and thoughts behind it are OCD. Regardless of why it's there, giving in will only make it worse. It will expand and morph if it's allowed to. It nurtures the fears and rituals and by appeasing, you send the message that he's right to be afraid, that there is "truth" in whatever he's believing. Your actions say "Mom and Dad think you're right to listen to that voice" and the voice grows stronger. Believe me, I know how hard bedtime can be and how things can fall apart in a split second. I know the rage that comes from not letting them follow their scripts. I've been there many many times. But you might want to read a few children's books with him like Up and Down the Worry Hill, or What to Do When You Worry Too Much for anxiety. It describes worries as tomato plants - water and nurture the plants and they grow like weeds. Ignore them and they wither and die. It didn't get rid of our son's OCD rituals, but it did help him understand what was happening, gave him a vocabulary and let him know that we understood, so he didn't have to feel it was something he couldn't talk about (which only makes their anxieties worse and their imaginations run wild).

     

    In the same way you may have had to explain to your son that he's "allergic" to strep or some other medical explanation for what's going on, kids need to know what's happening to their thoughts and emotions. What To Do When Your Brain Gets Stuck is also an excellent book for OCD. You don't have to call it OCD if you don't want to. But the tools to make things less scary were a big help. It took a very scary time for all of us and made it seem like something we could manage.

  2. Have you had an independent neuropscyh evaluation? We were headed that way but were advised to wait until after PANDAS was under control because the PANDAS itself would show up as all sorts of issues and we wouldn't be getting a true picture of what was PANDAS and what be be any underlying and longer term challenges. But since you're out of the woods, an evaluation might give you the support you need to push for accommodations - such as a limit on written assignments, the ability to do some work at home on a keyboard...

     

    My son gets extra help for reading - he goes with 4 others for a half hour each day to a reading tutor, but since this is essentially 20% of the class, and other kids get pulled for a half hour of math, it isn't a stigma (at least not in 2nd grade). Then, another reading consultant comes into the classroom for certain times of the day and lurks in the background, almost serving as a teacher's assistant. She'll float around the room, helping the kids in her program (making sure they can read the directions or helping an ADHD kid to get back on task). In this way, none of the kids really know who's getting special help and who isn't. They just think she's there for everyone. It isn't the same as having one-on-one help, but if the anxiety is the biggest hurdle, then maybe it's an option, with a tutor at home if needed.

     

    The academics can be learned in many ways. But protecting her self esteem, especially after all she's been through, is paramount. So I think the burden to creatively bring help into the classroom is on the school. Your daughter shouldn't be "punished" by being pulled out, if this is how she views it. It could trigger a silent meltdown about performance that would be far harder to repair than sloppy handwriting or bad spelling.

     

    And for whatever it's worth - some of the issues you're still seeing may resolve. You've heard how it can take a year or more to heal. But if your gut tells you there are longer term issues at work, then a neuropsych eval would help you pinpoint areas that need accommodations and it would also reassure your daughter that she's bright but that parts of her brain aren't communicating properly - having a name for what's going wrong is often easier to handle than thinking "gee I'm dumb" or "I'm so different from everyone else."

     

    I wish you nothing but good luck - battling the school was one of the worst of my PANDAS memories - still makes my blood boil.

     

    Laura

  3. I guess I'd like to know more about his motivation for doing this for hours...is he doing it because he HAS to - if he stops, is he afraid something will happen? Will he rage if he isn't allowed to do this? Is his desire to learn how to spell words driven by perfection - that he'll somehow be a failure if he doesn't know how to spell a word?

     

    Or is it a fascination or fixation - more like you'd see in Asperger's?

     

    It's nearly impossible sometimes to tell what motivates a 5 yo, and they very often can't look inward and articulate their feelings. But what drives the behavior is important in determining what to do about it - if anything.

     

    You don't describe any other PANDAS symptoms - is this "obsessing" the only behavior you're seeing or are there others?

  4. there is a potential of deposits in the brain that IVIG will resolve, IVIG modulates the bone marrow and PEX does not.

     

    That is a strain of strep that inclusive of the M1, M3 and M18 (same as the strain they located in RF). With that particular strain it creates a toxin that makes the individual very sick because the individual doesn't have enough anti-toxin to get well, IVIG also acts as an anti-toxin (per study). In these particular patients the exotoxin was found in the BLOOD agars......... why PEX is so immediately successful. So, unless ALL the blood is exchanged or the patient is able to fight off what little is left in blood the potential of relapse is high. Hence IVIG.

     

    -Wendy

     

    Thanks. Do you have citations for each of the above? I've never heard anything of "deposits in the brain" or about IVIG modulating bone marrow. Would like to read the studies.

  5. But all the numbers are lower than they were in the original bloodwork, done in September before the PEX. The pneumoccocal serotypes are lower, and the IgGs are lower-- they've gone from low normal to deficient.

     

    This is great, for insurance purposes, because we now have the documented deficiency. But it does make me wonder if PEX does render them a little more vulnerable.

     

    The other thing is that his ASO number is now.... 145. It was 600 before PEX.

     

    I know we debate the relevance of this number, but for my kid I think does correlate to PANDAS symptoms.

     

    He is still symptom-free, and I am enjoying his company like crazy... though it's hard not to scrutinize his every move. I personally am convinced that it WILL come back without follow-up IVIG.

     

    I'm just curious - shouldn't you expect numbers to be much lower following pheresis? Isn't that the point of doing it? Does this really show a true underlying deficiency or just that the pheresis did its job?

     

    I understand the fear of things coming back. I really do. But if you did pheresis to get rid of things and it did, why are you pursing monthly IVIG so soon afterward?

     

    I'm not trying to criticize. I'm just trying to understand your thoughts and those of Dr B.

  6. To us, it was explained that choreiform movements were often mis-identified as "fidgetiness" and an inability to sit still, that a kid would slide out of chairs or be unable to sit still.

     

    My son played piano with his toes, not his fingers. I believe chorea is technically an SC symptom and that in Pandas, you look for choreiform movements. To us, it sounds like splitting hairs, but some research papers make the distinction that if a child has chorea, they have SC not Pandas. I guess there's a medical distinction. So if you're watching video, just bear in mind that a doctor may look for something a little different in Pandas.

  7. I know it's a bit of a drive, but you may want to contact Dr. Tanya Murphy at Univ of Fla Gainsville - she is a PANDAS doctor who may be able to help you determine a proper diagnosis

     

    2000 Southwest Archer Road

    Gainesville, FL 32608

    (352) 392-3641

     

    It's at least worth calling her. Here's her background

    Dr. Murphy was Director of the University of Florida’s (UF) Child and Adolescent Psychiatry Outpatient Program and Medical Director of Children’s Services from 1994 to 1997. From 1995 to 2008, Dr. Murphy was Director of the UF Child Neuropsychiatric Disorder Clinic. During this time, she was also Medical Director of the UF Autism Unit (1998-2000) and Chief of the Division of Child and Adolescent Psychiatry (2005-2008). Teaching positions at UF included Instructor with the Department of Psychiatry (1994-1995) Assistant Professor (1995-2002) and Associated Professor (Tenured; 2002-2008) with the UF Division of Child and Adolescent Psychiatry.

     

    Dr. Murphy is a member of the National Tourette Syndrome Association Medical Advisory Board and the Regional Obsessive Compulsive Foundation Scientific Advisory Board. She is a member of numerous professional organizations including the American Academy of Child and Adolescent Psychiatry, the Anxiety Disorders of America, the Movement Disorders of America, and the Society of Professors of Child and Adolescent Psychiatry.

     

    Dr. Murphy joined the faculty at USF iin 2008. She is currently a Professor with the Departments of Pediatrics and Psychiatry, and holds the Maurice A. and Thelma P. Rothman Endowed Chair of Developmental Pediatrics.

  8. If you don't mind saying what part of the country you live in (just a region, not even a state), someone can recommend a PANDAS doctor. We can all share our experiences, but nothing is better than an office visit with an experienced doctor who will see things you may not (and can also prescribe, which we cannot). There are a half dozen who are very knowledgeable about PANDAS and know what it is and isn't.

  9. Our biggest issue was the "scripting" aspect of OCD - the intense desire to have others do and say things exactly in a certain way and raging if that didn't happen.

    Tamar Chamsky's books had some really good insights. We used a CBT technique that led us to name each emotion - Mr. Bossy, The Worry Guy, Edgar the Angry... Then when we saw a behavior we didn't like, we'd chastise the emotion guy, not our son. So we'd say "Edgar, leave my son alone. He does not want to feel this way and act this way. Stop tricking him and making him feel so horrible." This let our son know that we weren't angry at HIM, just at the disease and the behavior. In the middle of an exacerbation, they have so little control over what's happening to them. Having names to yell at de-personalized things and taught a young child (6) how to manage his feelings. More than once, in the middle of a rage, our yelling at Edgar defused the situation and ended the rage much quicker than simply trying to "reason" with my son. In a rage, they are beyond reason. But they somehow can still relate to the more concrete concept of thinking of emotions as little people inside themselves.

     

    This also helped for bedtime anxieties. After coming into our bedroom numerous times because he was scared, we'd remind him that it was just the Worry Guy tricking him, trying to get attention. My son would beg us to sleep with him. Sometimes we did. But if we felt he could handle it, we'd tell him no and explain that our going into his room only made the Worry Guy afraid of the parents and it taught the Worry Guy that our son didn't have to be listened to. That the only way the Worry Guy would ever respect our son as the boss was for my son to do the bossing back on his own. Otherwise, he'd always be the victim and not the boss. Since "control" was so important to him in other respects, he slowly - very slowly - got better at this.

     

    Over time, my son learned that we understood he couldn't help it when the bad guys showed up, but he was ultimately to only one who could boss them back and he was ultimately still responsible for the bad guys' behaviors. So he wasn't excused from behaving well. There were still consequences when he didn't try to control his rages. But he at least knew we didn't think that HE was a bad person. It did give him a sense of control during very scary times.

     

    This was all in conjunction with antibiotics and other medical treatments. But as a coping tool during bad times, it helped us all feel like we had some tools.

  10. For our son, CBT/ERP therapy was simply a waste of time during exacerbation (our therapist gave up). And the psych meds (SSRI, neuropeptics, benzos) were horrible - like pouring nitro on a bonfire!

     

     

    Why shouldn't PANDAS be treated like "any other case of OCD or tics" like the NIMH webiste recommends?

     

    CBT and ERP have been great tools for my family. It was extremely helpful to control rages and we are using it to help with residual OCD that my son is only now able to talk about. So I would always encourage CBT/ERP as coping tools while you work toward recovery. It is never a bad thing to practice being the boss of your own thoughts and emotions.

     

    But absolutely agree that meds should not be recommended nor should Pandas be treated like classic OCD. Gee, nurse - one patient is bleeding because he skinned his knee and one is bleeding because of this bullet in his leg, but both are bleeding, so get me two bandaids. The symptoms are the same.

  11. Buster,

    This is great - I think it will save new parents an awful lot of time. Here are my comments"

     

    Q: Is PANDAS just mis-diagnosed Sydenham Chorea?

    I thought there were studies that determined Pandas is a separate condition than SC and if you had SC, you didn't have Pandas?

     

    Q: Why does IVIG or PEX work?

    Plasma-pherisis works by removing the antibodies in #1.

    I think it's plasmapheresis, no hypen and only one i at the end - that's what pops up when I google... Also think we should avoid the abbreviation of Pex in a Q&A. What's being used for the moment is plasmapherisis, not Pex. They're actually two different treatments (Pex being pheresis plus IVIG). So while I always use the abbreviation, what I'm really talking about in my own experience is pheresis.

     

    Q: What is the purpose of a prednisone burst and why does it work?

    A: The prednisone burst is used to temporarily shutdown ...maybe slow down? The thought of shutting down an immune system is going to scare people. Think it should also be clear we're talking about a short period of time, not as a long term treatment.

     

    Q: We had a negative throat culture, does that rule out PANDAS?

    A: No. Group A Beta-Hemolytic Strep can colonize on the skin or the sinuses (plus ear infections, meningitis, pneumonia, GI infections, perianal/vaginal?)

     

    Q: How long after starting antibiotics should I expect a response?

    A: In severe exacerbations, some parents have reported a response within 24 hours. However, more parents have reported symptom relief at 10-12 days post initiation of antibiotics. (is this creating a false expectation that relief = completely gone? maybe "significant improvement"? Maybe mention that episodes can last for many weeks even on abx depending on length of untreated illness - it can takes months for things to clear for kids who've been sick for a long time)

     

    Q: How long after starting a prednisone burst should I expect a response?

    (would add a caution about TS kids and how they may have a bad reaction to prednisone - don't want it to sound like it's not without risks)

     

    One other comment that I know others will not agree with - I respect others' opinions about vaccines. But I don't think it belongs on a Q&A about Pandas. I think it's muddying the waters. I personally think a vaccine discussion belongs in a separate place, not a Q&A. Just m.o.

     

    Based on the group result on the NIMH suggestions, I think this will end up being a great resource for parents and caregivers.

  12. Just to ditto. I saw the same UC Irvine research and thought there may be some benefit to trying it. We're stuck with glucosamine, not NAG, because my son won't swallow pills and we need something in a liquid. We found liquid glucosamine at CVS and it has a vanilla taste that blends well with Fuze coconut banana drink. We're not religious about it, but my son takes it when he complains about muscle soreness and whether its a placebo effect or it actually helps, he seems to feel better an our or so after taking it. It gives us an alternative to dosing with Mortin every night.

  13. Got a response re: the IOCDF site. They are re-creating their site in 2 phases. Phase 1 was to move the core of their information and make sure everything was up and running correctly. For phase 2, they plan to add a Pandas page. It is not their intention to remove Pandas from their site. It just wasn't included in phase 1 of the migration. My limited experience with OCDF is that they are pretty receptive to Pandas, so I don't have any reason to think they won't be true to their word.

  14. I absolutely love it! especially the getting help section. No truer words were written.

     

    I have my email drafted. I just wonder about the shot-gun approach. I would love to get our comments into the right hands before our names get added to a spam filter at NIMH. Does anyone have any ideas on how to navigate the bureaucracy?

     

    I find it ironic that for all the banging on doors we do and our refusal to stop advocating, we can't figure out how to hook up with the right person at the very institution that identified PANDAS in the first place! Finding the owner of the web site is even harder than finding a good doctor - at least there are a half dozen of those...

  15. Here are some email addresses that might be appropriate (but hard to say - navigating the NIMHs site is no easy task)

     

    swedos@mail.nih.gov Dr Swedo

    paul.grant@nih.gov Dr Grant

     

    Volkov, Marina L Acting Director, Office of Science Policy, Planning and Communications mv31o@nih.gov

    Buckley, Diane Deputy Director, OSPPC buckleyd@mail.nih.gov

    Little, A. Roger PHD Sr. Policy Advisor for Sci. Coord. alittle@mail.nih.gov

    Stevenson, Maggie Program Coordinator NSC mdahl@mail.nih.gov

    Egan, Katharine D Chief, Science Writing, Press and Dissemination Branch ke66j@nih.gov

     

    maxine.steyer@nih.gov Maxine Steyer - not sure of her position, but she's the name given as to who to call for more information about Intramural Research at NIMH. I believe she's connected with the Office of the Scientific Director

     

    Richard Nakamura, Ph.D. Scientific Director of the Division of Intramural Research Programs, rnakamur@mail.nih.gov

     

    Maybe try a few each day. If anyone knows better connections, by all means, please post.

  16. Autism One has some great articles on their site - in their quest to find biomedical answers for their kids, these parents end up walking on a lot of the same trails we do. Thought some of you might be interested in this one entitled "A Gut Feeling for Immune Dysregulation & Neuroinflammation in Autism" by Aristo Vojdani, PhD, MSc, MT and Jama Lambert

     

    It is an excellent 9 page primer on the immune system.

     

    here's the link:

     

    http://www.autismone.org/content/gut-feeli...msc-mt-and-jama

  17. Here is the conference flyer. http://conference.autismone.org/documents/...%20one%20ad.pdf

     

    Jenny McCarthy will be the keynote speaker. Dr Latimer is tentatively scheduled to speak on Friday May 28th. I don't know when Dr K is scheduled.

     

    I believe anyone can attend but there's no info on getting tickets. I'll check into it and let you know. I do know in the past there have been DVDs of presentations for those who couldn't attend. You can go to www.autismone.org and poke around.

     

    Laura

  18. Buster -

    Can we pull some of this conversation out into a new thread - one that identifies our conversation as "The NIMH campaign" or some such? Not sure how to do that. But what we're talking about is exciting and long overdue and has nothing to do with Beth Maloney appearing on tv.

     

    I too support an email campaign to lobby for changes to the NIMH web page. It is so very wrong. Between this page and the Wikipedia page (I know, I won't get you started), it does such a disservice to kids.

     

    So let's start a new thread and post some phrases/thoughts that we can all include in our emails (with footnote sources for research studies if possible).

     

    If anyone has a better source of NIMH email contacts, please post that as well. We need to reach the people who have the authority to make changes. People in the public communications departments, people in charge of funding, Dr. Swedo's boss...

     

    I think we as a community underestimate our power to advocate for change. We have a voice. We just need to use it and present ourselves as informed, calm and rational parents expecting scientifically-supported medical treatment for our children who suffer from a recognized disease. No drama, no desperation, no apologies.

     

    If some of us don't endorse the message as it's being presented by Beth Maloney, then we have a responsibility to our children to offer a revised message, supported by research.

     

    On that note, I confirmed with AutismOne that both Dr. Latimer and Dr. Kovacevic will be speaking at the May conference in Chicago. AutismOne has 100,000 members in the US and UK and advocates for biomedical research and treatments for autism. They are very interested in "co-morbid" diseases that could be effecting their children.

     

    Every step we as a community take to get the word out takes us one step closer to slaying this beast called Pandas. Time to stop talking amongst ourselves and start speaking out.

     

    Laura

  19. How do we get the NIMH page updated? If I was an interviewer, I would see the NIMH as the ultimate authority and it would trump parental anecdotes.

    That is a great question. I have sent emails to the webmaster at NIMH, have contacted various perceived owners of content, all without success. I tried calling one day and just gave up. If you find a way in, I'd sure be willing to provide a marked up copy of the NIMH website with corrections based on the current research.

     

    Buster

     

    Here's a list of communications people at NIMH

     

    Volkov, Marina L Acting Director, Office of Science Policy, Planning and Communications email mv31o@nih.gov

    Buckley, Diane Deputy Director, OSPPC email buckleyd@mail.nih.gov

    Little, A. Roger PHD Sr. Policy Advisor for Sci. Coord. email alittle@mail.nih.gov

    Stevenson, Maggie Program Coordinator NSC email mdahl@mail.nih.gov

    Egan, Katharine D Chief, Science Writing, Press and Dissemination Branch email ke66j@nih.gov

     

     

    I don't know if any of them would be the correct people, but if they all got enough emails, sent and sent again every few weeks, it might get the attention of the proper people. Squeaky wheels and all that. I really think that PANDAS does not get any funding because NIMH feels that no one cares. Everyone assumes that it's a rare disease. But there are 1.5-3 million kids with OCD. If only 1% of them have PANDAS, that's 150,000 kids. Toss is Tourettes, GAD and ADHD kids and it's pretty easy to make an argument that there's a difference between rare and rarely diagnosed.

     

    Buster - do you have a particular message you've composed in your head that you'd like us to convey? Some references to recent studies, some key points that need to be addressed? It would be more effective if we all communicate roughly the same ideas.

  20. I think it might be worthwhile for all of us to contact interviewers prior to her speaking engagements and make sure they have background information that can help them conduct a balanced interview.

     

    There are three main points that I don't feel are adequately addressed - ASO titers, treatments other than high doses of augmentin and the way Pandas can present itself. Not every kid presents the way Sammy did. I think the way Beth presents information on ASO and symptom presentation can lead parents to inaccurately dismiss the possibility of Pandas.

     

    If anyone is inclined to contact interviewers, here are some sample thoughts:

     

    First, sudden-onset OCD is not the only symptom nor is it necessarily the primary symptom of all PANDAS children. Many children have sudden-onset tics (motor or vocal or both) or extreme anxiety as their dominant symptom. While very common, OCD is not an essential criteria. NIMH's website lists the first of five clinical symptoms as the presence of Obsessive-compulsive disorder and/or a tic disorder. I would like to make sure your interview clarifies this point, as I feel many mis-diagnosed children will continue to be excluded if parents are not made aware of this.

     

    Second, there is no test to confirm PANDAS. Statements that rising ASO and/or anti-DNase B titers are a "test" for PANDAS are incorrect. PANDAS is a clinical diagnosis based on symptoms and medical history. 37% of children who have had a strep-positive throat culture will have no rise in either ASO or anti-DNase B titers one month later. For those children who show no outward signs of strep, having elevated titers may indeed help convince a physician that strep may be involved and PANDAS may be worth consideration. It is a worthwhile test. However, if families are led to believe that a negative titer test means their child cannot have PANDAS, they will be poorly served. 37% is a large number of children who could pay a high price due to mis-information.

     

    Finally, while antibiotics, both for treatment of strep and for prophylactic prevention of future infections, certainly play a key role in the treatment of PANDAS, they are not the only treatment. Research studies have found both IVIG and plasmapheresis to be effective methods to alleviate PANDAS symptoms. IVIG is widely used to treat a number of autoimmune diseases. There are certainly risks to these procedures, as there are risks with long-term use of antibiotics. None of the families who have opted for these treatments has done so without regard for the risks. But these procedures have brought significant improvements to some children and cannot be dismissed with a wave of the hand as "too risky" for consideration. Ms. Maloney herself sought plasmapheresis for her son and was only dissuaded by the fact that she could not find any doctor to perform the procedure. In the seven plus years since then, it has become more accessible. I would challenge Ms. Maloney to provide evidence to support her claims that these procedures are too risky for consideration.

  21. Perhaps more need to write to Autism One. Don't forget that Beth was invited to speak at their international conference in Chgo in May. They should invite Dr K. He's lives right there.

     

    My understanding is that Dr Kovacevic has been asked to speak their conference.

     

    I think our focus as advocates should be on contacting interviewers prior to appearances/interviews to make sure that that they are informed and know what points need to be covered. This will help make sure that the important points get the air time. Once the interview is over, it's much harder to "correct" the message. Better to focus on getting the message right the first time.

  22. Judy,

    Beth Maloney was interviewed by AutismOne in October. I contacted AutismOne to express my frustration that Beth's message to the media was, in my opinion, incomplete. When she discusses her own experiences as a memoir, I have no issue. She tells her own experiences and that has helped many parents learn about PANDAS and encouraged some to try higher/unconventional doses of augmentin with some success. But she has made comments about IVIG and Plasmapheresis being too dangerous, and I do have issue with that. When Beth was asked in the interview about why she felt IVIG was dangerous, she responded that she had a friend who contracted (and died from) AIDS after a blood transfusion. What upsets me is that IVIG is not a blood transfusion and as a spokesperson for a foundation, she has a higher responsibility to be accurate in what she says.

     

    As a result of my conversations back and forth with AutismOne, I was invited to write about my own family's experiences with PANDAS and our decision to try plasmapheresis. The article will be published in the January edition of AutismOne. I was given a "quota" of words and it's really hard to say all there is to say in a limited space. So I tried to focus on the disease and why IVIG and Pex are considered and how they may help as treatments. I didn't go into the gory details of my son's battles. There wasn't enough space in the article and it seemed awkward to tell a group of parents raising kids with autism about battles with the medical community, battles with schools, battles in trying to get the correct help for your child. I think they know a thing or two about the surreal world in which we live.

     

    Initially, the idea was that Beth Maloney would also be asked to write her thoughts for the same issue. I don't know if that happened or not. But I do think that people need to speak out and make sure that the message that gets sent in the media is accurate and complete. I don't agree with the saying that "all publicity is good publicity." Now that PANDAS is finally getting some attention, it's up to all of us to be "spokesmen" and make sure that when people learn about PANDAS, they get full and accurate science, not just what's true for an individual's experiences.

     

    Get your pens out!

    Laura

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