bronxmom2

Hi, Bronx mom. We should bond. I'm in Brooklyn! I agree, I probably am too hard on my boy as well. I sent you a message.

This summer my son spent two weeks in Norway with his father and his girlfriend, and they reported having no trouble with him at all, no strange movements, etc. In the photographs taken during this trip, he looks calm and composed. Part of this, I know, is that he spent very little time with other children while he was there, and I'm sure they pretty much gave him whatever he wanted... but I wonder if the cleaner environment was a factor.

I am watching this post... I was going to ask a similar question. What is the point of behavior modification or CBT when the underlying physical cause (brain inflammation) is still there? My son's PANDAS presents mostly as behavioral problems, adhd-like stuff, emotional meltdowns, and defiance. It's like some part of his brain is missing- he never learns from his previous bad experience. It's hard to be sympathic toward this. I sometimes secretly wish it was more anxiety, fear, depression, and obvious tics so my family would agree that something is wrong. As it is they just think it's behavioral problems and I have not been strict enough. In fact I am probably too hard on him! I also use TV as a calmative. Books work too, actually.

interesting, thank you!

Hi, I am curious is anyone else's PANDAS child has or had molluscum? My son had it around the first time he had repetitive cases of strep, and when I think he first developed PANDAS (about age two), and it persisted for a year. I've been wondering if it was in any way related, or just a coinidence.

Wow-- I'm so glad for this site! I had an appointment with Dr. Latimer for later this month, but now I realize she will probably want to see the Cunningham blood test before doing anything. So I've postponted the appt. with Dr. Latimer and written to Dr. Cunningham asking about the blood test. By the way when I spoke to Dr. Latimer's office they said she was seeing 3 PANDAS families TODAY. Do you think she wonders where we are all coming from?

Hi, I've asked this question before, but always buried in other posts: Now that you have a PANDAS kid, if you had another baby, would you vaccinate? I have a 15mo who's had some vaccines (up to 6months, I think) but I've refused all vaccines since I found out my older child has PANDAS. I told the dr. at 12 months that I was not necessarily refusing vaccines outright, but asking to delay them... anyway now I have to decide. My husband and I decided to use Sears' alternate vaccine schedule-- which delays and spreads the vaccines out. However I'm not sure I'm even comfortable with this. What would you do? Thanks!

I have a 15 month old baby I have not vaccinated because I am convinced they were the underlying problem with my older, PANDAS child... I am still wondering, should I hold my ground and refuse to vaccinate? About the flu vaccine... I cannot imagine how they could make a vaccine mandatory for every child in the country. That just seems impossible, not to mention ridiculous. I can tell you that would not go over well here in NYC. Many many many people would refuse-- and this is in NYC where the flu danger is probably the greatest.

Wow, this thread really resonates with me, too. My 7 yo son has what seems like a mild version of PANDAS (compared with what many on this board have lived through...) and there are time when I doubt the whole thing. I've been lurking awhile, but I had to respond to this one. Just last week I got into a big fight with my 16 yo stepson, because he's afraid I've destroyed my son's immune system by keeping him on antibiotics so long... he obviously thinks I am imagining the whole thing, probably just don't want to face that my kid is difficult, hyper, obsessive, emotionally intense, etc. (My secret worry, too.) Part of me was simply touched that the teenager cared so deeply about his stepbrother's immune system. I tried to explain the danger of PANDAS if I stopped treating it, but I could hardly bring myself to talk about it, I just feel like I can't even talk about it anymore. He kept saying, "is that really more dangerous than destroying his immune system?" It's so easy to forget what it's like when things are bad. What I really think is that there's a huge spectrum of this thing, as with autism, and that many many children diagnosed with emotional, behavioral problems or ADHD really have brain inflammation caused by PANDAS. I had a conversation with Dr. Rosario Trifiletti, who's very knowledgable about PANDAS, and he said that he believes PANDAS will cause a paradigm shift in our perception of "mental illness"--a radical shift of mental illness as caused by infectious agents. For some reason that comment was very interesting to me. Anyway I have a similar quandary right now... whether it's more dangerous to treat him or not to treat him. I feel like I have obsessed over this kid, his maddening behavior and his brilliance, for so many years... I'm tired.

Hmmm... so I guess I have the same question, why wouldn't steroids plus prophylactic abs work as well as "permanently" as IVIG?

Ironically, I just had a bad case of poison ivy that required steroids, and I was given prednisone-- since it's the only thing that's moderately safe while nursing. (I am still nursing a toddler.) Anyway, when the dr. mentioned prednisone I laughed (as much as you can laugh with your face completely swollen shut) and said I'd been trying to get that for my PANDAS son for many months to no avail. I saw her visibly stiffen and I think she then lowered the dose she prescribed...or maybe I imagined that?... anyway it was a good thing she gave me the minimum because as soon as I heard the word prednisone I thought of coming on here and asking what dose to give him and doing it myself with whatever extra prednisone I'd managed to obtain. I don't think I really would have done this, but the temptation was there immediately. The prednisone did make me jittery and emotionally and little volatile.

Has prednisone helped with your child's emotional symptoms-- emotional lability and rages? My child is so emotionally ragged and volatile-- he just seems to be the source of so much conflict when he plays with playmates-- I feel the other parents' sighs of relief when we leave. This aspect of the PANDAS is getting worse...

Hi Karen, Can you tell us how your daughter is doing on the prednisone? I have been wondering, because that is the next step for my son, whose profile is similar to your daughter's. Thanks!

Michele, I read your post a few days ago and really felt for you. Are things going any better? I know it is so hard to be angry at your child so much of the time. Where is the line between "their fault" and "not their fault"? It may all be the result of illness and brain inflammation... but we need to hold them accountable, somehow, for behavior that totally crosses the line. Now my stepkids are with us for the summer and it's a nightmare... C. is delirious with overexcitement... we have 4 children in the house and I cannot balance everyone's needs. We are also struggling financially, so I can't get him (or me) any therapy. I keep thinking that getting screamed at as much as he does is going to have huge psychological consequences for him. And also for the baby. I hope for your sake (and mine) that Dr. Latimer can help us. I have decided to just pay the $580 or whatever even if the insurance won't cover it. I will try prednisone and if that has no effect, I may have to try behavioral drugs, which I have resisted to this point and still oppose, really. You asked when my appointment was-- not until mid-August. My son will be traveling in July-- going to see his father in Europe-- something we decided to do a while ago and I think a break might be good for us, anyway. And I don't want to give him the prednisone until I can observe him closely.

I just want to thank you all for your thoughts... things have been crazy here so I haven't been on the board for a while. I just made an appointment with Dr. Latimer.... I just hope the insurance company will cover it.

Hi, I am frustrated and feeling hopeless again! My son's behaviors keep morphing. A few months ago he seemed stabilized emotionally; our main problem was that he refused to do his school work, I mean he wouldn't write ANYTHING, the teacher was talking about not passing him (despite the fact that he's probably the smartest kid in the class), and I was poised to pull him out to homeschool. Then suddenly he was willing to write --the results were still pretty atrocious, honestly, but he did it willingly and it didn't seem to cause him intense psychological pain as writing had in the past-- so I thought, OK, maybe he is pulling out of this... maybe the writing is the last piece and things are going to get better... Then, a few weeks ago, the rages started. Now a day can't pass without a total emotional meltdown-- usually, there are several. His emotional volatility is extreme. And around the same time, he started to swing his arms all the time. Big, wide swings of his arms-- all the time-- and he can't seem to stop. And he picks at his teeth. And keeps biting the inside of his cheeks, which are now riddled with sores. And his attention span and impulsivity are getting worse again. This weekend we went to the beach and he couldn't stick with anything for more than 30 seconds. Also, if he had the impulse to do something (throw a ball at someone) he could not stop himself from doing it. It was alarming. Watching it, I was getting sick to my stomach... though my family did not see anything that unusual... Now I am starting to have panic attacks myself. I mean real panic attacks. Hyperventilating, tingling extremities. Because the thing is, for a months he's been back on the strong antibiotic my pediatrician did not want to keep prescribing, but then agreed to because his titer levels have not fallen. So for two weeks the Cefdinir helped, then it all started falling apart again. A virus? (We are in NYC) The baby's had a bad cold... Or maybe it's not PANDAS at all, and I'm just "in love with the hypothesis" (as someone said to me once)... Do you guys get relief from your kids' maddening behaviors if you remove them from overstimulating environments? Because I have to constantly remove my child, and if it's just the two of us, or a similar environment that I can control, I can usually get him back. So I have this instinct to pull him out of the school where he MIGHT be getting exposed to something. And I am bracing myself for a horrifying summer of overstimulating houseguests. And getting more and more depressed myself. I have taken him to so many specialists and, as so many of you have experienced, no one does anything.

Hmmm... a specialist I saw in NJ last week suggested I see a pediatric cardiologist to make sure my son does not have SC/ heart damage... I sort of dismissed the suggestion (I am so sick of specialists and sheepish about dragging what appears to be a very healthy kid to all these appointments)... and just kept trying to see if I could get him to offer IVIG or at least prednisone... but maybe I should do it. So far all my appointments have been fruitless. I'm happy for you, though, mom md!

Hi, welcome to the board! It's been REALLY REALLY useful for me. My son also takes Cefdinir-- this is the antibiotic that first resulted in dramatically improved behavior and caused my discovery of PANDAS. He has taken a treatment dose of Cefdinir since Dec. 1... with a few breaks when the pediatrician insisted that I switch him to Amoxicillin, and I had to watch him fall apart again. Cefdinir seems to keep him stable, so I am sticking with it for now... I am tempted to try Zithromax, but, like I said, Cefdinir works for us... I figure I can try Zithromax if Cefdinir stops working-- though my reasoning might be all off on that one.

Hi, I am wondering-- I can see why LOW titers don't rule out PANDAS, but do very HIGH titers tell us anything-- beyond the fact that the child's been exposed to strep?

thanks!

Hi, I just did a lit review of Sue Swedo's PANDAS research... trying to find the studies of IVIG, prednisone, plasma exchange that Buster referred to. It was interesting to see the research evolving through time, so I thought I'd post if here. She was looking at the relationship between SC and OCD as far back as 1989. These are listed chronologically, most recent first. (The one I was looking for is #10) Literature review—Susan Swedo 1. Children with obsessive-compulsive disorder: are they just "little adults"? Swedo, Susan E.; Kalra, Simran K.. Journal of Clinical Investigation (0021-9738) 4/1/2009.Vol.119,Iss.4;p.737-746 Source: Health Source: Nursing/Academic Edition 2. Executive and attention functioning among children in the PANDAS subgroup. Hirschtritt ME; Hammond CJ; Luckenbaugh D; Buhle J; Thurm AE; Casey BJ; Swedo SE. Child Neuropsychology: A Journal On Normal And Abnormal Development In Childhood And Adolescence (1744-4136) 2009 Mar.Vol.15,Iss.2;p.179-94 Source: MEDLINE with Full Text 3. Tubulin is a neuronal target of autoantibodies in Sydenham's chorea. Kirvan CA; Cox CJ; Swedo SE; Cunningham MW. Journal Of Immunology (Baltimore, Md.: 1950) (0022-1767) 2007 Jun 1.Vol.178,Iss.11;p.7412-21 Source: MEDLINE with Full Text 4. Relationship of Movements and Behaviors to Group A Streptococcus Infections in Elementary School Children. Murphy, Tanya K.; Snider, Lisa A.; Mutch, P. Jane; Harden, Elaine; Zaytoun, Annette; Edge, Paula J.; Storch, Eric A.; Yang, Mark C.K.; Mann, Giselle; Goodman, Wayne K.; Swedo, Susan E.; Murphy, Tanya K.. Biological Psychiatry (0006-3223) 2/1/2007.Vol.61,Iss.3;p.279-284 Source: Academic Search Premier 5. Antibody-mediated neuronal cell signaling in behavior and movement disorders. Kirvan, Christine A.; Swedo, Susan E.; Snider, Lisa A.; Cunningham, Madeleine W.; Kirvan, Christine A.. Journal of Neuroimmunology (0165-5728) 10/1/2006.Vol.179,Iss.1/2;p.173-179 Source: Academic Search Premier 6. Neurocircuitry of disgust and anxiety in obsessive-compulsive disorder: A positron emission tomography study Dan J. Stein; Monisha Arya; Pietro Pietrini; Judith L. Rapoport; Susan E. Swedo. Metabolic Brain Disease September, 2006.Vol.21,Iss.2-3; Source: SpringerLink Contemporary (1997 - Present) 7. Streptococcal mimicry and antibody-mediated cell signaling in the pathogenesis of Sydenham's chorea. Kirvan, Christine A.; Swedo, Susan E.; Kurahara, David; Cunningham, Madeleine W.; Kirvan, Christine A.. Autoimmunity (0891-6934) 2/1/2006.Vol.39,Iss.1;p.21-29 Source: Academic Search Premier 8. Antibody-mediated neuronal cell signaling in behavior and movement disorders Kirvan, Christine A; Swedo, Susan E; Snider, Lisa A; Cunningham, Madeleine W. Journal of Neuroimmunology (0165-5728) 2006.Vol.179,Iss.1-2;p.173-179 Source: Biological Abstracts (SilverPlatter) 9. Reply. Swedo, Susan E.; Snider, Lisa A.; Swedo, Susan E.. Biological Psychiatry (0006-3223) 12/1/2005.Vol.58,Iss.11;p.918-919 Source: Academic Search Premier 10. Treatment of Sydenham's Chorea With Intravenous Immunoglobulin, Plasma Exchange, or Prednisone. Garvey, Marjorie A.; Snider, Lisa A.; Leitman, Susan F.; Werden, Rose; Swedo, Susan E.; Garvey, Marjorie A.. Journal of Child Neurology (0883-0738) 5/1/2005.Vol.20,Iss.5;p.424-429 Source: Academic Search Premier 11. Antibiotic prophylaxis with azithromycin or penicillin for childhood-onset neuropsychiatric disorders. Snider, Lisa A.; Lougee, Lorraine; Slattery, Marcia; Grant, Paul; Swedo, Susan E.; Snider, Lisa A.. Biological Psychiatry (0006-3223) 4/1/2005.Vol.57,Iss.7;p.788-792 Source: Academic Search Premier 12. Annotation: PANDAS: a model for human autoimmune disease. Swedo, Susan E.; Grant, Paul J.; Swedo, Susan E.. Journal of Child Psychology & Psychiatry (0021-9630) 3/1/2005.Vol.46,Iss.3;p.227-234 Source: Academic Search Premier 13. Obsessive-compulsive symptoms among patients with sydenham chorea Asbahr, Fernando R; Garvey, Marjorie A; Snider, Lisa A; Zanetta, Dirce M; Elkis, Helio; Swedo, Susan E. Biological Psychiatry (0006-3223) 2005.Vol.57,Iss.9;p.1073-1076 Source: Biological Abstracts (SilverPlatter) 14. Does group A beta-hemolytic streptococcal infection increase risk for behavioral and neuropsychiatric symptoms in children? Perrin EM; Murphy ML; Casey,; Pichichero ME; Runyan DK; Miller WC; Snider LA; Swedo SE. Archives Of Pediatrics & Adolescent Medicine (1072-4710) 2004 Sep.Vol.158,Iss.9;p.848-56 Source: MEDLINE with Full Text 15. Anti-basal ganglia antibodies in PANDAS. Singer HS; Loiselle CR; Lee O; Minzer K; Swedo S; Grus FH. Movement Disorders: Official Journal Of The Movement Disorder Society (0885-3185) 2004 Apr.Vol.19,Iss.4;p.406-15 Source: MEDLINE with Full Text ( 16. The Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infection (PANDAS) Subgroup: Separating Fact From Fiction. Leonard, Henrietta L.; Rapoport, Judith L.; Swedo, Susan E.. Pediatrics (0031-4005) 4/1/2004.Vol.113,Iss.4;p.907-911 Source: Health Source: Nursing/Academic Edition 17. Mimicry and autoantibody-mediated neuronal cell signaling in Sydenham chorea. Kirvan, Christine A; Swedo, Susan E; Heuser, Janet S; Cunningham, Madeleine W; Kirvan, Christine A. Nature Medicine (1078-8956) 7/1/2003.Vol.9,Iss.7;p.914 Source: Academic Search Premier 18. An immunological marker (D8/17) associated with rheumatic fever as a predictor of childhood psychiatric disorders in a community sample Inoff Germain, Gale; Rodriguez, Romeo S; Torres Alcantara, Saul; Diaz Jimenez, Maria Juana; Swedo, Susan E; Rapoport, Judith L. Journal of Child Psychology and Psychiatry and Allied Disciplines (0021-9630) 2003.Vol.44,Iss.5;p.782-790 Source: Biological Abstracts (SilverPlatter) 19. Genetics of Childhood Disorders: XXXIII. Autoimmunity, Part 6: Postsreptococcal Autoimmunity. Swedo, Susan E.; Swedo, Susan E.. Journal of the American Academy of Child & Adolescent Psychiatry (0890-8567) 12/1/2001.Vol.40,Iss.12;p.1479 Source: Academic Search Premier 20. An open trial of plasma exchange in childhood-onset obsessive-compulsive disorder without poststreptococcal exacerbations Rob Nicolson; Susan E Swedo; Marge Lenane; Jeffrey Bedwell; et al. Journal of the American Academy of Child and Adolescent Psychiatry; Baltimore (0890-8567) Oct 2000.Vol.39,Iss.10;p.1313 Source: ProQuest Research Library 21. Psychiatric disorders in first-degree relatives of children with pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS) Lorraine Lougee; Susan J Perlmutter; Rob Nicolson; Marjorie A Garvey; Susan E Swedo. Journal of the American Academy of Child and Adolescent Psychiatry; Baltimore (0890-8567) Sep 2000.Vol.39,Iss.9;p.1120 Source: ProQuest Research Library 22. Therapeutic plasma exchange and intravenous immunoglobulin for obsessive-compulsive disorder and tic disorders in childhood. Leitman, Susan F.; Garvey, Marjorie A.; Hamburger, Susan; Feldman, Elad; Leonard, Henrietta L.; Swedo, Susan E.; Perlmutter, Susan J.. Lancet (0099-5355) 10/2/1999.Vol.354,Iss.9185;p.1153-1158 Source: Health Source: Nursing/Academic Edition 23. Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections: Clinical description of the first 50 cases Susan E Swedo; Henrietta L Leonard; Marjorie Garvey; Barbara Mittleman; et al. The American Journal of Psychiatry; Washington (0002-953X) Feb 1998.Vol.155,Iss.2;p.264 Source: ProQuest Research Library 24. Autonomic activity in relation to cerebrospinal fluid neurochemistry in obsessive and disruptive children and adolescents THEODORE P. ZAHN; MARKUS J. P. KRUESI; SUSAN E. SWEDO; HENRIETTA L. LEONARD; JUDITH L. RAPOPORT. Psychophysiology November 1996.Vol.33,Iss.6;p.731-739 Source: Blackwell-Synergy 25. Case Study: Acute Basal Ganglia Enlargement and Obsessive-Compulsive Symptoms in an Adolescent Boy Giedd, Jay N.; Rapoport, Judith L.; Leonard, Henrietta L.; Richter, Daniel; Swedo, Susan E.; Giedd, Jay N.. American Academy of Child and Adolescent Psychiatry. Journal (0890-8567) 1/1/1996.Vol.35,Iss.7;p.913-915 Source: Family & Society Studies Worldwide 26. Sydenham's chorea: A model for childhood autoimmune neuropsychiatric disorders Swedo, Susan E. JAMA; The Journal of the American Medical Association; Chicago (0098-7484) Dec 14, 1994.Vol.272,Iss.22;p.1788 Source: ProQuest Health Management 27. Speculations on antineuronal antibody-mediated neuropsychiatric disorders of childhood. Leonardo, Henrietta L.; Swedo, Susan E.. Pediatrics (0031-4005) 2/1/1994.Vol.93,Iss.2;p.323 Source: Health Source: Nursing/Academic Edition 28. Sydenham's Chorea: Physical and Psychological Symptoms of St Vitus Dance. Leonard, Henrietta L.; Schapiro, Mark B.; Casey, B.J.; Mannheim, Glenn B.; Lenane, Marge C.; Rettew, David C.; Swedo, Susan E.. Pediatrics (0031-4005) 4/1/1993.Vol.91,Iss.4;p.706 Source: Health Source: Nursing/Academic Edition 29. High-Prevalence of Obsessive-Compulsive Symptoms in Patients with Sydenham's Chorea Swedo, Susan E; Rapoport, Judith L; Cheslow, Deborah L; Leonard, Henrietta L; Ayoub, Elia M; et al. The American Journal of Psychiatry; Washington (0002-953X) Feb 1989.Vol.146,Iss.2;p.246 Source: ProQuest Health Management

Buster, thanks for posting this! I think more and more of us are encountering doctors who want to help but require medical literature to back up what we are asking.

Oooh, I understand your not wanting to rock the boat with your insurance company, but I would LOVE to know how and why they approved the IVIG. My son occasionally complains that everything has a "green tinge." Gotta love him, anyway... he is 6 and actually uses the word "tinge" to describe it.

Thanks for posting this, Buster. These articles both look very interesting. Funny because I came on here today specifically to ask about literature supporting the use of steriods with PANDAS, at least as a diagnostic tool. I am also looking for articles to share with our pediatrician. He is interested in PANDAS and is willing to consider treating my son more aggressively, but also wants medical literature to back everything. Frustrating, because obviously one of the problems is that PANDAS has not been studied enough. Anyway I told him I would dig up anything I could and leave it at his office. Thanks!

Hi Jena, my son's attitude is definitely more negative since PANDAS-- and I too am just hoping this isn't permanent. If you don't mind my asking... do you pay out of pocket for the IVIG each time? Who is approving and ordering the treatment? Thanks